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Jo*mar
01-09-2007, 12:41 PM
Feel free to post your story, your RSD history, or an introduction to the forum members.


Hello & Welcome -

If you haven't posted in the main area of the RSD/CRPS forum, please do so, as sometimes new members get missed if they only post here.

You can copy your post from here, or make a new thread so the members can say hello.

Main area for the RSD/CRPS threads & posts-
http://neurotalk.psychcentral.com/forum21.html
__________________




Sheri
01-09-2007, 12:45 PM
Just diagnosed 6 months ago, not much support or experience for the medical community in the area where I live.

frogga
01-09-2007, 01:50 PM
Hey;

Most of this is copied from earlier on - but as it took me days to write I don't want to have to retype it!

Basically (if you can't be bothered to read this as it is very long and boring). I got RSD when I was 16 after injuring my right wrist and I am 21. In that time it has spread full body and I have developed secondary dystonia which is also body wide. I have just started at university and am studying psychology. I am in a wheelchair and have a live in 24 hour carer. I love animals and have 5 cats and 2 dogs at home and unfortunatly none at uni. I used to be very musical but now prefer hanging out with my friends or reading.

Take care and pain free hugs!

Rosie xxxxxxxxxxxxxx (a.k.a Frogga)

I have apparently had HMS for most of my life but wasn't really affected by it -my joints hurt if I did too much and I have pretty bad neck pain from the age of about 8. However, I still did sports, played for my county in hockey, was a grade 7 piano player and also played the double bass, accordion, organ etc. I was predicted 12 A* at GCSE (highest grades you can get) and was on an academic scholarship to one of the best private boarding schools in the UK.
When I was 16, in January 2002, I was packing to go back to school when I slipped going up the stairs carrying a pile of ironing. One of my cats, Fred, was walking down the stairs and ran between my feet and I went flying, hit the top of the stairs and in a desperate bid to not drop the ironing I threw my right hand out. I landed on my right wrist and fell down the stairs.
Everything went black.
When I came too my arm hurt so much I thought it was going to kill me. It had swelled to three times its size and had gone black and purple and ice cold. I couldn't move my fingers, wrist or elbow and it just hurt SO much. When mum got back from visitng my grandma she too me to A and E (ER) and they thought I had broken my arm. The X rays showed nothing, so the drs put me on some pain killers (dihydocodeine - similar to percocet I think) and sent me home with collar and cuff and told me to rest it. I went back to school (crying in the car - the vibration hurt so much) and tried to get on with life. The alloydinia was so bad that I couldn't keep any clothes touching my arm, nor bed sheets, blankets, water or anything, wind made me cry, everything hurt so much I thought it was going to kill me. Two weeks later I was still taking the tablets and getting no relief, no sleep and just generally going insane with pain. I went to back to A and E (ER) at my local cottage hospital close to school (Basically meaning they can take X rays and thats it) and they told me I needed an emergency appt with my PCP in case it was a blood clot. Anyway - saw the GP (PCP) who recognised it as RSD. He increased my pain killers, referred me to pain management, orthopaedics, rheumatology and physiotherapy and told me that I had to move and touch my arm to get better. So started a long process of treatment. I saw the rheumatologist 2 weeks later who then said that it was the worst case of RSD he had ever seen and if I couldn't get my arm moving then it would be amputated. I got admitted to hospital and started inpatient physio, hydro etc.
Two weeks into treatment the RSD spread into my right leg. It had been hurting and I woke up to discover that my leg had gone black, ice cold and just generally horrible. I couldn't weight bear on it so I was given a crutch for my good arm and hopped in conjunction with the crutch. I was working really hard on physio and had got some movement in my fingers but the swelling still wasn't going down. I had turned into a drugged zombie as the nurses tried to keep my pain levels low enough to move but the only thing I could think was "this pain is going to kill me" and at times even breathing burnt so much I didn't know how I could live through another minute.
I got discharged from hospital, still hopping with the crutch (they had tried to suggest a wheelchair but I told them I wasn't going to use one) , still unable to do anything with my right arm. (this was March 02). I was then spending a fortnight in hospital, a week at school and a week at home and then back to hospital. By now I had had to move into my house mistresses flat because I couldn't do stairs and my friends had to help me dress, wash etc. I was doing physio everyday, seeing the physios 3x a week, the OT's 3x a week and just trying to get some function back in my arm and leg.
This continued till April, when a "friend" broke my left wrist by dropping something on it (by accient admitedly - but im still cross about it). The break was lightly plastered because of the RSD and I had to hop everywhere on my left leg because I couldn't use a crutch until I asked the physio for a gutter crutch. Two weeks later the cast had to be cut off my left arm because the RSD had moved into it - my left arm had swelled so much the circulation was cut off to my fingers and I still have the scars from the cast. I was readmitted to hospital again. Sat my GCSE's in hospital and continued with the physio. So, it was May, and I now couldn't walk, use my arms or anything. Then came months of being in hopsital, doing physio, hydro, OT. drugs, infusions, quests for knowledge, increased pain management etc.
My drs finally decided to try a lumbar block as I just couldn't handle the pain any longer. It was my worst decision. I had it done and as soon as I came round from sedation my left leg had gone black. Whatever had happened whilst I was out - the RSD was now in my left leg as well. The sensitivity had got to a point where I was in shorts and a t shirt and I couldn't sleep on a bed - I had to either sleep sitting up or lying across a bed with my arms and legs hanging off. I lived in fear of being touched and was always on my guard in case someone came too close to me.
I finally came out of hospital in October time and tried to start at a new college on a full time course. I came out able to use crutches around the house and feed myself and that was about it. I dropped out of the A level course by december because I was in so much pain and so exhausted I just couldn't cope - I was still doing all the physio, all the desnense etc.
In November 2002 my physio put me in a wheelchair because I was so unsafe walking and because I had an infection in my legs. It was only going to be for a week or two. Four years on I am still in it. Whilst I was in the wheelchair I got dropped on the floor and broke my ankle causing dystonia in it and causing it to twist upside down and invert. Unforutnatly that was my "better" foot. From then on I started to get really bad muscle spasms, dystonic postures and found my muscles stopped responding how they should have.
Anyway. I then spent 02 and 03 in and out of hospital, trying new meds, new drs, new treatments, HBOT, blocks, infusions, physio, OT, hydro. Got assessed for and given new wheelchairs, started to have adaptions done to the house.
In Spring 2003 mum and I realised I wasn't going to be "magically" cured so she started a new thing with me. We decided to choose one symptom which seriously destroyed my qualiy of life - hypersensitivity - and worked on it. Slowly it started to improve, though we would have argument after argument about it - I wasn't allowed out of the house unless I was wearing trousers, socks and a cardigan and slowly as I forced myself to confront stimuli I realised the sensitivity was improving. I got a new bed (a heated water bed) and mum used to get up and check that I hadn't removed all the covers etc.
(you can tell she's a military nurse). ~Anyway - the sensitivity started to be dealt with slowly.
As I live in a very quaint area of the UK it thus means there is no wheelchair accessible public transport - and as I am miles from my nearest town and at least a 30 minute drive from college I learnt to drive an adapted car and passed my test.
I started back at college in Septemeber 2003 and managed to complete the year with ACC at AS. Went on to do another year at college and found a boyfriend who I pretty much lived with. He accepted me for who I was and what I could and couldnt do (I could feed myself, dress myself with help, drive
etv but still needed a wheelchair and help with quite a few things, cutting up food, getting in and out of bed, being lifted in and out of the bath etc).
Anyway - that year I got ACA in my exams. In this time my pain and dystonia had been getting worse. Although I had devleoped a better attitude towards the pain and realised that I had to get on with my life, and was still doing the physio etc I wasn't getting better, I was just getting worse. My feet were both totally inverted and my toes pointed backwards over my feet. I couldn't use my left hand at all because all my fingers had locked. I had specific splints for stretching my joints out but they were being odd. I got engaged to Jay and then broke up with him, realiing that firstly I didnt want this level of commitment and secondly it wasn't fair on him to spend his life with someone needing to be looked after allt he time.
I got referred to a neurologist in October 2005 after the spasms dislocated both my thumbs. This had been happening reguarly and had ended up with spasms whereI had dislocated thumbs, shoulders, knees etc. But my thumbs were the biggest problem as the spasms would pull them out of joint and then backwards over my hands - which was VERY painful and annoying! He didn't understand what was going on and so ordered an EMG to be done as he felt that it wasn't possible for RSD to get as bad as mine was. Meanwhile my pain management dr had decided to put me on ketamine because I was still not sleeping for more than 3 hours a night and even though I could now cope with clothes I still couldn't cope with anyone touching my skin etc. The ketamine trial was good and worked better than the high doses of fentanyl and morphine I had been on and so I switched.
A week later I got bitten by my dog and jumped. I couldnt open my mouth or hold my head up. Apparently the jump had caused my to develop orimadible dystonia. To avoid having to have tube feeds I had to be on liquidised food to try and eat it, though it also had to be thick enough to swallow as I also had problems with that. I was placed in a full spine/ neck brace to hold my head up and more tests continued as to why I had lost the use of it. Orthotics made me a special brace that I used during the day in conjunction with the head rest on my wheelchair to keep my head upright and to allow me to drive.
In March I had the EMG. Straight after those I lost almost the entire use of my arms (before I hadn't been able to use my fingers or thumbs, now I coudnt move my elbows either or my shoulders). Loads more tests etc and they discovered I had severe dystonia (which I have botox for). However, in 2006 I stayed in college, managed full time and managed to get 4 A's - the highest grades you can get. I got a place at a prestigous college to study psychology.
So now, on the 5th anniversary of me having RSD where am I? I am still in severe constant pain, I haven't slept through a night in 5 years. I take ketaime, dihydrocideine, baclofen, diazipam, benzhexol, ibuprofen, paracetemol and diclofenac. I am living away from home at university most of the time. I have live in 24 hour carers who feed me, dress me, lift me, etc. I use an electric wheelchair or am pushed around in my manual. My hands don't work and I have to have someone with me to do anything at all. I am waiting to see a neurosurgeon about possible having a DBS implanted. Both my feet are inverted and twist over each other, my toes are twisted backwards, my hips have twisted too. My periods stopped for several years and have now re started very sporadically. I still can't hold my head up and though my jaw has improved I still can't eat very solid food. I still aspirate frequently and have difficulty with swallowing. My elbows still don't work and my shouldners anre't much better. The botox has helped my right hand abit so I can operate my electric wheelchair. I have RSD full body and everything hurts, burns, stabs, screams. I can now wear clothes (but not shoes) but everything that touches my skin still feels like it is burning holes through it.

But at the same time - I now have a life - which is something I never considered possible. I have friends, I go out, I try and be as "normal" as possible. I even went on holiday last summer with my friends. I will never stop hoping that there is a cure or some relief somewhere out there - but my life is not going to stop whilst I wait for it.

HubbyWithRSD
01-09-2007, 02:48 PM
Hey all - well here's our story....

My huband suffered a major chemical burn to his leg in 1995 - It was a work related injury. MSDS sheets were not available, he sat with this stuff on his leg for more then 24 hours. We watched the acid literally boil under his skin. It was a horrifying experience. We thought that was the worst of it until about a month later he was diagnosed with RSD. Then the real horror began. He fought for months and years through therapy, blocks, meds with horrible side effects....through lots of work and a pain clinic - a few years ago he was able to "control" the RSD. When I say "control" the RSD I mean he still delt with pain, but the RSD was not controlling him. We started to have a somewhat normal life again after years of suffering.


~ Our New Saga ~

Hubby found a job driving/transporting people (kind of like a taxi but for employees of a specific company) - Vehicle was set up decent for his leg (plus he now has brace) and driving did not effect his leg OVER ALL but there were days when he could not work and delt with pain, cramping and discomfort. He delt with it as best as he could as we have 3 children and he was always our primary wage earner, he felt if he did not do something he was not doing his job as a father and husband. (That male pride thing - Even though he suffered...)

After working this job for a year (some months putting on 10,000 miles or more) he developed ulnar nerve damage (your ulnar nerve is your "funny bone") in both arms. This vehicle he was working in did not have any ergo for his arms, thus the vibrations from the vehicle on roads and on "off road" areas like by railroad tracks and the long miles resting his arms on the side of the door and arm rest caused the casing around the nerve to be crushed around the nerve and there are also other areas of compression.

He was diagnosed with the Ulnar Nerve Damage in early April of this last year 2006 - They did physical therapy for months, tried braces, etc and finally had to resort to surgery (Ulnar Nerve Transposition)....They started with his right arm first.

We were told there was a 50/50 chance that he could develop RSD in his arm - But as hubby had another surgery (unrelated & approx 4 years ago) with great success we were looking forward to positive results and no RSD flare up.

We could not have been more wrong. Surgery took place in October and after a few weeks of therapy with little to no success - he was diagnosed with RSD in his right arm.

Needless to say all further surgeries have been put on hold (so he still has damage to his left elbow and both wrists...)

And here we go again...........

Hubby is currently on:

1.) Ibuproferen 800
2.) Hydrocodone 7.5 3x's daily
3.) Lyrica
4.) Cylexia
5.) Zanaflex (is that how it's spelled) for muscle spasms

He is in physical therapy 3 days a week too and we hope we can put this monster down again.

As far as our family goes, our oldest remembers the past RSD, and now hearing of a new "round", and also dealing with dads ulnar nerve damage has been hard on him - Our youngest 2 did not really experience the early RSD but are trying their best to cope through this new round of medical problems and now RSD. I personally find comfort here and through research. I work (although it scares me some days to leave my husband alone while the kids are in school) for sanity and financial reasons. I come online and here as often as possible. Knowledge is power I say, we WILL find something to tame this beast.

Denise G
01-10-2007, 02:01 AM
I've commented some before. I'll fill in some details. First though, I want to say I'm so glad to find this site. I've had "the beast" for over 5 yrs but have never met anyone else with it. I'm hoping to get a chance to ask some of you more questions.

I was just leaving work on a Fri evening when a large room divider fell on me, trapping me under it. I'd seen it coming & "blocked it" from hitting my face with my right hand. Thought I'd broken several bones at 1st. Finally someone heard me yelling & pulled it off. My hand/wrist felt sprained, & my neck felt a little sprained. But within a couple of weeks (I kept working) I felt like monsters were attacking my right arm, hand, shoulder & neck.

I was sent to an Orthopedic Hand Specialist, who just shrugged when I showed him my swollen, deep blue hand & asked what it was. Even though my employer was furious that I never go a diagnosis, I kept going to this doctor (maybe I got hit in the head, too! :confused: ).

I had a torn ulnar nerve he said, & he put me in a splint & sent me for PT, too. The physical therapist kept saying something was "really wrong" with my shoulder, but the "hand specialist doc" just put off the MRI.

Two yrs later I got an MRI on my own & they found multiple torn ligaments, etc, etc. Fortunately I'd been seeing a Chiro who was GREAT with elbows & shoulders who kept it loose.

After the MRI diagnoses WC switched me to an Orhtopedic who was a "Shoulder Surgery" specialist. I told him I wanted to try injections before surgery & he went along with me (thank God!), because after 2 injections I could barely function due to the pain. I cried at work in the bathroom. That's when they told me I had RSD. Thankfully we didn't go straight for the surgery!

It took about another 8 months before WC would approve me for SGB's. But they worked fantastically when I finally did get them (total of 6).

My injury was in Aug 2001, and in 2002 I started having burning on the bottom of my feet. It slowly moved up my legs. They both now burn to just above my knees. I don't know if this is RSD or not. And, since WC only authorizes my doctors to look at my arms/hands (they've acknowledged it's moved into my left arm too, but not nearly as severe as right), the doctos just sort of change the subject when I ask what the pain is in my feet and legs.

Maybe someone has had a similar experience.

After I went to an Agreed Med Exam last Feb, not knowing 18 months of my medical records were not sent to him, he P&S'd me, so I have had to live on $720 a month "advances" from any settlement. I'm in dire financial straights! I've had to "live" on my credit card, now I can't afford the minimum & was on the phone arranging stuff with them today. But something always works out! I just thought my settlement would come through at least 6 months ago!

I live in a guest house that's just perfect, even though my family are all far, far, away. My landlords are my friends, & let me go without rent a month or two, even though they've had problems. But they just got a notice that their house is in foreclosure!! I feel so bad for them. So I'm trying to arrange to move....somewhere. I have about $75 to pay toward rent these days. So, I shouldn't have any problem, right? :D

If I didn't hurt so much & feel so tired, I'd dress up & go see if I could find a "Knight in Shining Armor"!! :)

I love to laugh, that's why I love reading some of the stuff on this site. You funny guys, KEEP IT UP PLEASE!

The way I try to look at it is that my life is kind of an adventure right now! I'm praying & waiting to see what opens up!

Take care all you precious people!

Denise

Denise G
01-10-2007, 02:05 AM
Hi Sheri,

Welcome! What kind of treatment have you been getting so far? It's great you're being so proactive in getting info! Good for you!

Denise

Denise G
01-10-2007, 02:20 AM
Hi HubbyWith,

That's for sharing your story! What a story!

Isn't it amazing how one time you can "get away" with doing something, & the next time "all hell breaks out" (i.e., your Hubby's 1st surgery was ok)?

Thanks for sharing his meds. Can he sleep when he takes Zanaflex? I've developed severe headaches & neck pain, I thought due to the sprained neck I got at time of injury. But I recently read Dr. Hooshwhatever's info and he said RSD in the arm/shoulder goes up into the back of the head causing occipital headaches. Which is what I have!

Usually my Ortho just had me on Soma, & I can't tell if that works. But when I had a severe headache I went to a PM doc on my own (WC won't cover him anymore - but he's trustworthy so I paid case to see him), and they gave me a Toradol (?) shot, and Zanaflex.

When they got bad again a few months later, my regular Ortho gave me Baclofen, when works just as well as the Zanaflex on my neck spasms, but I can't sleep at all when I take them. I don't remember this problem with the Zanaflex, but I was on a high dose of Lyrica at that time, and I've cut back since I'm not in a severe flare right now.

Also, they don't have me on a anti-flammatory (like Ibruprofen). Maybe I'll ask about it. I don't think my Ortho really knows how to treat RSD. When I hear of something & tell him he seems to be ok with trying it.

Your poor Hubby really must have suffered with that chemical burn! It sounds like a horror movie! I'm so sorry! How old are your kids?

My two sons have both been married for about 20 yrs. I have 5 grandkids. The youngest, Matt 11, is going to have surgery on a lymph node in his arm soon. There's a chance it could be Leukemia. We're praying.

I rarely see my family since RSD. I have to drive with only my left hand, which has of course caused problems in that elbow & shoulder also. I have a special pillow for my right arm to rest on so it doesn't "hang".

How does your hubby drive? Can he at all?? He's a blessed man to have such a caring wife!! You are special!!

Take care,

Denise

septmystic
01-12-2007, 06:26 PM
Hi - One of the worst things I have found with RSD is the non-support of medical professionals. It took 6 years for me to be diagnosed, test after test, attitude after attitude and finally confirmation. It started in my left hand/arm and face then moved to my right arm/hand. Both hands are effected now so I don't type long. But still, I am on 3 waiting lists for Ketamine (Any-one know a doctor?), one doctor will see me for 15k but he is far away and my current doctors say there is nothing they can do for me. Pain meds that barely touch the surface, no support and still a lot of attitude. Talk with people, search for help and reach out that is all we can do! Unfortunately, I have found that we must find answers ourselves. Don't give up! I made up a saying long ago that I think all doctors should adhere to...."For a man/woman to truly see, they must look beyond their own ego":icon_wink:

dlkeil
01-17-2007, 02:03 PM
Hi,
My name is Diane, I have been diagnosed with RSD since 2/2002. I fell in the parking lot at work and broke both the tib/fib 2" above my ankle in my left leg. I had surgery to repair the damage-2 plates, 19 screws. 1 screw was thru both bones as the tendon that holds the bones over the joint was compromised. I had another surgery 3 months later to remove that 1 screw, then in Oct 2002, they took the remaining hardware out thinking that would resolve the pain. Guess what.. it didnt!

I was finally diagnosed with RSD and have been trying to find a way to live with it and work with it. It has been increasingly more difficult to work the 40 hours I am restricted to. No ot no weekends.
My medicine regime has constantly changed to try to control the pain. So far, it is from my mid calf down to the tips of my toes. I believe it is beginning to crawl up my leg to my knee as I have burning pain more prevelant at night in that area now.

Luckily, I have had wonderful QRC's and doctors. I was diagnosed about a year and half after the accident. I am looking foward to participating in this chat area for both support, laughs, direction, and anything else anyone can provide that will help living with this much easier.

My family doesnt quite understand. My grown children are concerned about the amount of medicine I am taking, but my oldest son (28) attended my last doc appt and seemed satisfied with what he heard. (He lives in Italy and was finally home for a visit so he was able to go with me finally). My youngest son (25) still gives me some grief about the meds. It is difficult to explain this to someone that loves you and hates to see you like this. Hopefully one day, my youngest will be able to go to the doc with me as he is my emeregency contact should anything happen too me. My mom, well, she hears news stories about the meds I am on and calls me thinking that I am going to die any day if I dont get off these meds--but somehow I seem to calm her down letting her know that I try to keep on top of all the medical information about this as I can.

I am looking forward to gaining more info and sharing what I know if I can.:icon_wink:

Rainbow422
01-19-2007, 03:38 PM
Hello everyone!

New to the group, here's my story, quick and short.

I have RSD in the right (diagnosed in 7/06) & left (diagnosed in 11/06)
(wrist arm and hand) on both sides. I believe I hit stage 3 when it
spread to the left side. CRPS1 due a strian so they think. I was at
work and they believe it is due to a repetative motion injuy from
typing (an unbelieveable amount) or possibly from lifting heavy boxes
during this time.

RSDmom
01-22-2007, 10:36 PM
This has been a hard story for me to write but here it goes....

My daughter, Rebecca, was 8 when she was bitten by a spider and possibly hurt her foot in the snow. She developed a mild case of RSD (at the time, I thought it was horrible) but PT and time took care of it. She didn't miss school and life was great. She was LUCKY to be diagnosed within a few weeks of it starting by a fantastic doctor. The dr only took 5 minutes to diagnose but followed up with tons of tests to confirm. We were in PT that afternoon.

The monster slept for two years. To the point, I had almost forgotten it. Then, in PE, a mile run in the gym, set off the chain of events. While at an appointment for my other daughter, Annie, to diagnose RSD in her wrist, Rebecca was on crutches and the good Dr had her in PT that day. Six weeks into this flare, with a frozen foot and no help in sight, our dr referred her to a pediatric physiatrist. She is amazing! She prescribed Neurontin and continued PT and brought in a pain specialist. He performed a series of nerve blocks and provided many alternatives to them if they didn't work, but thankfully a set of five blocks worked and with PT, we got her walking again. She missed four months of 6th grade. But took tennis lessons in her wheelchair!

Seventh grade. Someone twisted her foot again in a collision. Back to the clinic, back to PT, back for 3 nerve blocks. I think we had fewer nerve blocks because as soon as the foot froze, our dr scheduled her immediately. She missed 3 1/2 months of school but had a homebound teacher. RSD moved to right hand for a total of one week. Our dr saw us the same day as it set in and gave us options, luckily we didn't have to use them. Weird.

Eigth grade (current). A great year. Wonderful teachers, fantastic support. Becca, living in my bubble, was walking down our outside steps and twisted her OTHER ankle. 'Just a sprain Mom! ' were the worst words I had heard in a while. The sprain came and stayed. It has turned into RSD and 6 weeks later, here we are. A huge fear for us, is that our pain dr has moved. He feels the new dr will be fine for us and she will do pediatrics.

She is not in school right now, but is trying hard to get back. We had a horrible week last week--but this week is better. The rollercoaster continues.

I know this is a place for RSD patients to ask each other for help, but I really feel like families suffer from it. I hope you don't mind if I chime in. I do think at times it is harder on me than it is on her as she is so supportive and optimistic. I wonder where she gets her strength. My girls are my heroes.

GalenaFaolan
01-23-2007, 12:53 AM
This is going to be long so you may want to either skim or read it in bits. :-D My story starts February 5, 2003 with an injury at work. I was a cook at Denny's, so was my hubby. I worked overnight and him during the day. It worked out very well because we didn't have to have any kind of daycare or after school thing for our daughter who was in 4th grade at the time and almost 10 years old.

I'd had to stay on at work that morning because my next cook didn't show up. So, I had to wait till the day manager came in. My luck it was the one manager who couldn't cook!!! Oh boy. Well, he no sooner walked off the line for the office when I side stepped to grab toast and BAM my left knee slammed into a broken handle on a reach in refrigerator. It had been broken for year and they wouldn't fix it despite many banged knees from every cook!! I hit it so hard that my vision went black and I'm lucky I didn't fall to the floor or crack my head on the counter back there. Bill came back right then and he immediately knew what had happened. I straightened up with tears streaming down my face, standing on one leg (I fondly refer to it as “pulling a flamingo”) and went right on cooking. I knocked down the checks then dragging my leg behind me, went home. I told them all to not put in any egg orders till hubby got there. Called hubby as soon as I left and filled him in on what happened on the way home. He was outside waiting for me to help me up the stairs. When I woke up that afternoon knee was hurting me but I could limp. I wrapped the knee up and went to work that night. Big mistake!!! Within an hour I was in so much pain and could only cry, dragging my leg around. The manager that night was an idiot and wouldn't let me go home or call anyone else in either. I somehow made it through the night. Told hubby let me get 4 hours of sleep, I needed to go to the hospital. He called work and talked to the boss and told her what had happened the morning before so she'd have the paperwork ready for me. Got up, did that and went to the ER. Got x-rays, doc poked the knee (lucky I didn't kick him!) and was told it was severely bruised. Put me in a child leg immobilizer (adult size was too big for me), got crutches and went home.

I saw 2 temporary docs in 2 weeks. The 2nd week I had ditched the immobilizer and started walking again. Didn't hurt too bad and had a limp. Was cleared for full duty again and went back to work. Managed to do 5 days. February 21st dawned and I was in excruciating pain!!! Leg was so swollen and I couldn't put any pressure on the foot or leg at all without pain shooting sky high. Had to wait till Monday to see if I could go back to the doc. Got in on Tuesday morning. The regular doc was back from vacation and he was a real a**hole!! He didn't actually say it but he implied I was lying and faking it. Tried making me walk without the crutches down the hall and I didn't even make it out of the exam room. He ordered an MRI, came back negative for anything. Went back on Thursday because leg was swelling even more and turning really funky colors and was ice cold to the touch. He brushed it off and said it was nothing. Got MRI done and was sent off to an Ortho though it showed nothing. It was the start of April now and within 5 minutes at the Ortho he diagnosed me with RSD. When I asked what it was he told me to go home and look it up online. Gave me klonopin pills and something else I can't remember but no pain meds. Wrote a scrip for PT. Came back in 2 weeks and he had a really bad attitude. Treated me nasty for no reason and told me I didn't need those crutches and I better be off them when I came in again in 2 weeks.

I had to get a lawyer in that 2 weeks because work comp wasn't paying me and was denying me PT. I don't understand that one at all!! Once I got a lawyer they approved PT right away!! Got in 2 or 3 sessions but still needed crutches to walk at all though I was able to put slight pressure on foot/leg. He wasn't happy with me the next time and treated me even worse than the last time. He yelled at me and stabbed me with a pin. I told him the thigh and hip were now hurting and he got even more angry. I begged for pain pills, couldn't take it anymore. He all but called me a junkie but gave me 20 tylenol 3's. What a joke! Didn't even begin to touch the pain. He was passing me off to another Ortho for a “second opinion”.
2nd Ortho diagnosed me with RSD again and gave me scrip for lortabs. I thought great, finally some good treatment. Seems I spoke too soon. He wanted me in PT because of noticable atrophy of left thigh. I told him it hurt me a lot the first time around but he insisted. So, did round #2 and made it for 10 sessions before PT dismissed me because it wasn't helping at all and I was getting worse, pain wise. First round of PT I was only approved for 6 sessions and did them all. Did a bit of pool therapy as well which helped me get off crutches completely after almost 3 months on them. The 2nd round did reverse the atrophy in my thigh and it hasn't returned. He was nice the first couple of appointments. By the 4th he was getting a bit surly and almost refusing me pain meds and had me on 2 a day. HA! What a joke. I happened to get a peek at my file and saw what was written there. He had written that I had residual rsd. I told my hubby what it said and we both had a really hard time not laughing our butts off right then and there. I said, what is that?? Is it better than what I got cause if it is I want it. Then my left leg started doing that uncontrollable jerking thing right in front of the doc and he had the nerve to look me in the eye and tell me I was getting better!!! Yeah, I was full body already. He had ordered a bone scan in July before I saw him in Aug and it showed nothing other than a healing fracture in my knee that no one knew was there.

He decided to pass me off to someone else so ended up at a Neurologist. He ordered another bone scan which came back negative for anything. He gave me vicodin 5mg, 3 a day and then wouldn't give me enough to even get through the month so I was always running short. He put me on the Duragesic patch for about 3 months then took me off. Within a few months I settled with WC.

In between the “regular” docs I saw over that year and a half, I was also sent to a Ortho for wc's second opinion. That one looked at my legs and feet. Now they were so purple they were almost black and he told me I had RSD but I was getting better. Oh geez. It upset me a lot but what could I do. They work for the insurance company not me. Then I was sent for 2 IME's during that time as well. The first one near my home wasn't bad. He was a good doc, asked good questions and was gentle. Told me I had RSD and what treatment he would like to see me get. The 2nd IME was in Orlando, 2 hours away and he was a quack!!! He spent 5 minutes with me, turned my legs into a pretzel and said I didn't have RSD because I didn't scream when he touched me, I had no atrophy, no stiff joints. Never mind all the other symptoms, including pain and burning and sensitivity to air, changes in skin, hair growth change and change in the way my nails grow. Upset again but at least I didn't cry, I was really ticked off!!

After I settled with WC, got a new place to live after 2 more months (thanks hurricane Jeanne) I went back to the Neuro thinking he'd be better cause I'm paying now and besides he already knew all about my case and had dx'd me with rsd for the umpteenth time. I was sooooooo wrong!!! He refused to give me anything other than vicoden 5mg. He says you have a choice, vicoden or the patch. I told him I don't have a choice because I hate the patch, it made me feel sick all the time and tore my skin up and the biggest reason of all, I can't afford it!!!!! I'm paying for myself now and don't have that kind of money. Soon got sick of it all and after the third visit never went back. Went through a very rough few months until I found a new doc. He's wonderful and the whole office staff is awesome! They really care and let you know it. If I have questions about anything I can ask and the time is taken to answer me thoroughly. I decide what I take or don't and I'll decide when I need a new med or meds and then we'll discuss it, settle on the what and go from there. I hope to never leave this town so I can keep this doc for as long as possible, hopefully forever. :D

Karen

PS RSDMom, I can see where they get their strength from, you. I wish I had a mom like you!! *hugs* Oh I'm 37 and still mom-less. LOL I hope things improve for you all. You're 100% right, families suffer RSD not just the one with it.

BroadwayBaby
02-08-2007, 04:33 PM
Hi Everyone!
I was diagnosed with RSD 8 years ago, in my first week of high school. I'm one of those fun cases where there was no precipitating injury, just a sudden onset of symptoms - horrible pain, loss of circulation, etc. That first attack lasted three days - my lower leg looked like a cadaver and I couldn't walk. Luckily, my case is not one in which that is always the case, but it made diagnosis difficult. Sometimes, I would go to a doctor and they would see the decreased/nonexistent circulation, the stiffness, the cold, etc. Sometimes, I'd have pain but no other symptoms.

To make an overly long story short, in the last 8 years I've seen dozens of doctors and tried everything from PT and hydrotherapy to sympathectomy. Most were simply ineffective. The sympathectomy was a nightmare - the poor, scared resident doing the procedure had no idea what he was supposed to be doing, and then afterwards, I had post-sympathetic pain for a year. My best success has been with Neurontin for pain control - it works about 50% of the time. I use narcotics only when absolutely necessary - I don't want to become dependent on any of my medications, and all of this started when I was still a teenager. I have this terror that I'll become too accustomed to my meds and they'll no longer be effective when I get older.

I've had a consistent progression of circulatory symptoms, with accompanying muscle and bone loss, permanent damage to the veins of my leg, etc. that I'm sure you've all heard of/seen/experienced before. I've been really lucky - although my pain and other symptoms have progressed and radiated from the original site (right knee), I've only very recently begun to experience any symptoms elsewhere, which is probably partly my fault. I refuse to use crutches or a wheelchair (I'm often stubborn to the point of idiocy), which means that I limp a lot. This has meant that my left knee has had to bear a great deal more strain, and now the deterioration is progressing rapidly, with the onset of RSD-like symptoms.

Anyway, without too much whining (I hope), that's my story. I am so glad to finally be talking to people who actually know what I'm talking about! :)

miepie
02-11-2007, 11:44 AM
Hi,

I am Mieke. I can't type much so I will keep it short.
After 20 years of struggling with doctors (one ruined my knee), I was diagnosed with RSD. My foot has been saved from amputation 5 times, but the doc could not prevent my RSD spreading through my whole body. The consequences of this all are that I am completely bedridden, I wear braces on my whole arms and my leg and have an electric wheelchair. I hardly come outside (maybe twice a week) and when I do it's usual for the hospital. I don't go on holidays either.
I live in an appartment of Assisted Living and my American husband takes care of me the rest of the time. I am on a load of medicines from Tramadol to a plaster with fentanyl, but it seems no one is reaaly able to control my pains anymore. It's also entering my organs now (liver and bladder and I got asthma).
I hope to find some friends here that understand what I'm going through.

Mieke

Cake
02-16-2007, 06:33 PM
My rsd started from a blood test in my right arm 6 years ago. The nurse put the needle in too far, damaging the median nerve. I did the rounds of medications etc over the years, have had lots of highs and lows, and thankfully I had a lull long enough to be able to have another baby (my third, a son called Dayne).

I've had three ketamine infusions. (7 day awake treatments) The first giving me pain relief lasting 30 days, the second lasting 10 months. During this ten months I was able to fall pregnant and have baby #4- Hannah, now 8 months old. But while I was pregnant (about 5 months) I was bitten by a spider on my leg, and before I knew it my rsd had spread to there as well. Being pregnant, I couldn't take any meds and struggled thru the rest of the pregnancy. The first infusion also did away with 70% of my allodynia, which was fantastic. It doesn't hurt me so much now when my kids touch my arm or hand.

I had another ketamine infusion when Hannah was 12 weeks old, but unfortunately it didn't help the pain in my arm or leg, and it was stopped early due to raised LFT levels in my liver. Since then I've had to just go back on my previous medications while I'm waiting to see my pain specialist. The symptoms have spread quickly through my foot (of course breaking my toe in December 06 didn't help :rolleyes: ) and up my leg and life is tricky right now. I can't take my breakthru meds anymore (endone) because I chuck them up everytime. Hopefully I can see my dr soon and get something working for me.

I'm now 29 and have four kids under 9 who I adore. :p We live just north of Sydney, Australia and my husband is carer for me and the kids, so we're all together nearly all of the time- which is one of the good things to come out of this! :rolleyes:

x Kate

caretaker
02-18-2007, 03:04 PM
Hello, I know exactly what you are talking about. It is my husband that suffers from rsd but we went through approximatly 15 doctors before getting any real help. He was accused of everything from laziness to wanting drugs. Many doctors would have him in hospital give him drugs to heavily sedate and try to ask him questions when he was in a fog. We have found help and I see you are in PA. There is a Dr. Mary Torchi associated with Pain med pc and has office in Greensburg and Pittsburgh. She also sent us to a therapist who now is in Greensbug named Jerry Felton. We think very highly of both of these people. Not that it has been easy but they are compassionate and realize not everyone with this responds the same to treatment.

Annick03
02-27-2007, 02:47 PM
I've had RSD for 3 1/2 years. I had to have 2 nerve releases in my left arm. But after the surgery, I wasn't healing . The pain was worse. So, the surgeon thought right away that it could of been RSD. But was not sure but sent me to a pain specialist that specialized in RSD. He said that I had it. I had a nerve block that day, followed by a month and half of nerve blocks. HE told me he could keep doing this but it would be expense for me. So, my next thing was SCS. I had the trail which worked and little. So, we went ahead with the SCS. I worked for the first month a little then I fell and it didn't work so well. But, it was still in the right place by what x-rays showed. I'm on meds, too. I go in every two week too get reprogrammed because that the pain is extremely bad. But, it does not work. My left arm is contacting. So, we try phyical therapy, which cause more trouble for me. My right arm went numb and I was have the burning pain and the same problems as the left. Then I could not move my left hand, arm at all. So, we stop that. I try my on exercise with my left arm/hand but it still contracts. I am in the process on changing doctors because this one will come to my town once a week. But, even my family doctor sees that my doctor now is not doing anything. So, we are changing. I do have a wonderful husband that helps me everyday. He is so wonderful. I know it is not only me going though this but also him too.
His life changed too. But we make the most of it. :hug: Annick03

loretta
02-28-2007, 03:30 PM
Hello everyone, this is my first time to post on this forum. I am truly sorry we all have this disorder in common. I, like most of you, have been to many Drs
and misdiagnosis, missing the 6 month window of opportunity to have any procedures to stop the circle of pain from injured site to brain. My family live is Scottsdale, Az for 8 years. About two years prior to moving I had a botched left breast surgery and lymph glands under the arm They removed the benign tumors, but the following day complications reared up its ugly head. I had fluid removed from arm two or three times. My entire arm became frozed -useless, and painful to touch. I was told I had frozen shoulder and sent to a nice Rehab Dr. who said it was the worst frozen should she had ever seen. After 100 physical treatments and 100 massage treatments(which I paid for) I felt they would help the p.t. to get my arm back. Very Very painful I had refused surgery from the orothpedic surgeon the break my arm-still woud have had to have p.t. treatments. After moving to Scottsdale, our daughter 18 attented a college to be a court reporter. This was the closest to Oregon. There are only 5 with a BA in the country.
She has been in cases regarding RSD patients sueing Drs. for failing to inform patient of risk of getting RSD from the surgery. There are sooooooo many.
Anyway, after moving here the RSD moved to the right shoulder. Then, it moved to my left hand. After more than a year in left hand and hand completly frozen, then p.t. to get the fingers moving again partially- it's like a claw. This is when I decided to fly back to Oregon to a sports injury group. The hand Dr. came in the room and said in 30 seconds- I'm afraid to tell you RSD- hope it isn't. Tests at the hospital said RSD. not arthritis the Scottsdale Dr. said I had- Sometimes I wish I hadn't let the two year of opportunity to sue. (That's two years from learning of the disorder-not two years from the injury. Law in most states. Then the RSD moved to the right hand, both feet, neck- Dr. calls it full body. Also have Trigeminal Nerve Pain on the left side of face. I would like to talk to Denise G in Palm Springs. My e-mail is patch2 @ cox.net. I'm so sorry again aand would like to share a couple of things after 10 years of experience and learning. I don't mind using the forum too, if it can help others. I've learned to much on the forum. I just joined this forum a couple days ago. It was another forum I learned a lot, plus a support group in Phoenix. We had a wonderful conference at Barrows Neurological InstituteThere was also a national conference downtown Phoenix at the Hyatt to educate Drs. and nurses nationwide to look for signs. Probably half in the country have never even heard the words RSD. Thank you for your patience in allowing me to share my sorry. It's unbelieveable the helpful education we receive here. LOL loretta

rsdno
03-02-2007, 08:07 AM
Hi I guess I havent been here for a year or 2 I think I was Comenyaro before . I had RSD dxed when I was 14 there are names like Sudecks Atrophy etc etc but later I foubd they were all RSD my Neurosurgeon (who I respect so much ) still calls my RSD "Causalgia" which it is burning (much like a Third Degree burn when the nerves come back) I havent had trouble getting my meds from Doctors since 1983 though Pharmacies have wanted to be Drug Policemen ,if you want to know what I take I would tell the amounts privately (E Me) I tke Morphine Contin sand Morphine Ir Klonopin etc etc ,I have Major Depression but I figure most with RSD do ,hurting this bad is depressing ,I have tried blocks SGB and Epidural ,Sea Snail Venom and Puffer Fish and SCS and "Morphine Pump" but gor me just taking my meds helps most ,I am dependent but not an addict ,if I can ever answer any question or be of help E me ,my RSD has been diagnosed since 1968 but I'm sure many of you have had to wait years to get the right dx like me still I had RSD since 13 so thats like 39 years dx ,I keep good thoughts for you all Gentle Hug rsdno

loretta
03-09-2007, 04:39 PM
This is to Septmystic, My name is loretta, and I have had RSD 10 years-full body now. I live is in Scottsdale, AZ There is a Mayo Clinic here, close to where I live. A friend of mine worked there and with 5 Drs. studing ketamine and RSD. Dr. Swartzman was one of the Drs. I for get the other names. One went back to Germany where they allow patients to under go a 5 day coma under ketamine. FDA allows ketamine doses less than that I believe for three days. Australia has been doing this procedure for some time. Swartzman I believe came from Australia. Any Dr. Swartzman and a 2nd Dr. from the Mayo ketamine trials are now at the Hershey hospital in Penn. I called but got no return call. I've heard there is a long wait list. The results vary , but are not permanent. Hope you can find help soon. I know this pain gets real old. I use music therapy, my cat, long soft fur and she loves to snuggle with me in bed. I love reading. This forum is wonderful to not only be able to express our thoughts but listen to others share their pain and disipair and their knowledge and encouragement and just enduring. I try to exercise daily, in the summer swim every day. I belong to a health club with indoor pool, I just haven't been able to get the energy to get there. It's only 1/2 mile away. Hope you find a Dr. soon. Loretta

loretta
03-19-2007, 08:29 PM
ToGalena Faolan, I'm so sorry for all the discouragement you've had with Drs. I also had a very long time. We moved from Oregon to Ariziona. I had
Drs. in Az. not giving good treatment and diagnosis so I flew back to Oregon to good Sport Injury group in Eugene. Dr. walked in room and diagnosed me in 2 minutes. followed by tests at the hospital. I have lifetime full body now.
I'm going to post longer after this on this thread. Sincerely, Loretta

puppybraille
04-14-2007, 08:26 PM
My RSD journey started in 2003. We still don't know how I injured myself, but it was likely because my foot was too flexible, and I got tendonitis. I didn't get officially diagnosed for six months. After a year, my RSD went into remission. Now, though, it's back, and spreading. It started in my left foot, not even all the way up to my ankle. After it came back, it got much worse, and is now up to my knee.

Just so no one is surprised, I'm blind, and travel with a guie dog named Julio. I'm in college, majoring in social work. I look forward to participating here.

nikmcjo
04-15-2007, 04:30 PM
Here is my story. Kinda long, but a lot happened. So here it is.

I was a gymnast for 11 years and had just made it to level 7. On June 8th of 2006, I was tumbling and I landed on my face and hurt my right foot. My mom then took me to the doctor. Once there, they determined that I broke some bone in the the ball of my foot so they put it into a temporary splint and crutches until I could get in to see my orthopedic doctor. After a day or two, we got into the orthopedic doctor office. My regular orthopedic doctor who we had dealt with in the past and was an excellent doctor was off that day. We were scheduled to see a different doctor. He took some more x-rays and said that my foot wasn’t broken and gave me a foam shoe and said to get off of the crutches and out of the shoe soon. He wasn't very nice. Anyways, the next day, my foot started turning black and blue and it was even more swollen and it started to hurt more than a break should hurt (rsd pain). It was also ICE cold. It wasn't hypersensitive at the time. We got back to the doctor and asked for my regular orthopedic doctor. He wasn’t there so we saw another doctor. He said that it was broken and he put me into a cast. He said when we came back in 2 weeks, my doctor would be back and we could see him.

Two weeks went by and we went back to see the doctor. My doctor was finally there and said that it looked as if my break had healed nicely, as if it was never there. He gave me an orthopedic camel walker boot with an air pump and said to use that and the crutches as needed then slowly wean off of them. Then he said for us to come back in a month. I started school then again after the summer break and I forced myself not to use crutches, but the pain got the best of me after a week and I resorted back to using them. My foot also began experiencing hypersensitivity to wearing shoes and rough socks so I went back to the ortho boot and fuzzy socks. The ortho boot hurt still, but I was able to tolerate it and it hurt a lot less than everything else.

After a month, I was still in the boot and on crutches. My doctor wasn't there, but we saw his nurse practitioner. My dad brought me this time opposed to my mom. My mom knows that we are not supposed to see her because something always goes wrong when we see her. I tried telling my dad that but he insisted on us seeing her. She got angry at me for being in the boot still and still on the crutches. She said she wanted me to walk out of here without crutches. My dad said okay and put them in the car. I felt as if I was going to die when walking out to the car. I stopped after 20 feet and just sat down and stayed there until my dad brought the crutches to me. It took 20-30 minutes and he finally gave in. We then went to see my mom and she was furious at my dad and the nurse. She told me to still use the crutches if needed, which I did. She also called the doctor back and told them she wanted to reschedule immediately as soon as my doctor came back. My mom took me this time and we found out the day of my appointment that I was scheduled with the nurse again. My mom told them that we were rescheduling again so they fit us in the next day. When we came the next day, the nurse saw us and asked why we had rescheduled and my mom told her that we wanted to see the doctor. We saw him and he realized that something wasn’t right with me because he knew from the past that I bounced right back from an injury. He scheduled me for an MRI within 3 weeks. I also started physical therapy 2 days a week for an hour a day, but it didn’t seem to be helping so we stopped after 2 weeks.

After the MRI results came back, they were abnormal. My doctor said that it was either arthritis or RSD. He believed I had RSD, but I had to have a blood test to rule out on of them. After the blood test, the results came back negative for the arthritis, so I was officially diagnosed with RSD on September 23rd. I then started physical therapy again with another person.

Slowly I began declining. The hypersensitivity was greater and the pain was becoming more severe and it was always cold and hurting more than I could ever imagine. I still went to the gym, but not as often. When I went, I would do stuff that didn’t involve my foot. I started physical therapy again with another person. He was okay.

Then by the beginning of November, I started to feel the same pain in my left foot. It wasn’t as severe, but it was getting harder for me to use crutches. I temporarily stopped the therapy also. My arms also started hurting, but I didn’t want to sound like I was complaining too much. I thought my arms were just sore from being on crutches for about 5 months anyways. I told my mom about my left foot and when we went for thanksgiving to visit my grandparents, we got their old wheelchair. Unfortunately, it was made like 50 years ago and it wasn't exactly the right size or in the best shape but it had to do at that time. I went back to school in the wheelchair and my arms seemed to not hurt so much anymore so I was okay temporarily. My mom called the doctor back and they scheduled me for a lumbar nerve block. That ended up relieving the pain in my left foot, but it made the RSD in my right foot more severe. My left foot was never as severe and I never experienced the hypersensitivity though. I was able to revert back to the crutches.

After letting my mom know that the nerve block made my right foot feel worse, she called back my doctor and he said that the only thing he could do for me temporarily was to make a SAV cream to apply to my foot. He prescribed one and I got it within a week. I started applying it once a day. I stayed on it for a month or so. I also started therapy again. It was a lot harder than before. When I went back to the doctor, I told him that the cream wasn't doing anything (no harm, but no help). He then prescribed me another one, this time for the circulation. It had a vasodilator in it. He told me just to put it on my right foot. The physical therapist I had been going to told me it might be easier if I just started going to a local place with a pool and then go to him every 2 weeks because his place was a far drive for us.

After the first day in the pool at the new place, my mom and I noticed I had a small red rash on my right foot. Because she is a nurse, she knew that vasodilators could cause rashes. She told me to stop using the cream and just make sure that the rash doesn't get much worse. She called the doctor back. He said to just keep an eye on it and let him know if it gets worse. He said don’t use the cream anymore. Over the next few days, I kept an eye on the rash. It slowly began to grow and then it seemed to cover almost the whole top half of my foot. Then my foot started swelling to double the size it was with the typical rsd swelling. I couldn’t get it into the boot anymore. With the RSD pain and the swelling and rash, my foot felt unbearable and I decided that if it didn't get better then I would want it amputated. We let the doctor know and he was out of town so they scheduled us the next day with the who else but the nurse practitioner again because she was the only person there that had seen my foot since being dx with RSD. My mom wasn’t very happy with that but since it was an emergency, she stuck with it. The next day, my foot was four times the size it was before and it had an almost blistered look on top of it. It was starting to all the colors of the rainbow. The nurse saw it and she saw it and said it was just a severe rash and it should clear up in a few days with prednisone and cream for rashes. She said I might need an antibiotic but she wouldn't put me on it unless it gets worse. I could even tell it wasn’t just a rash and I'm just 15. Anyways, I went back to school after that appointment my foot kept on growing and turning more colors. It didn’t look like a foot anymore. I had to take off the ace wrap I had on my foot. I could feel that my foot was swelling up more from that. I purposly put it on loose so I could tell if it was swelling. I had a sock on under the ace wrap so nobody was diguisted. In class, I asked to go to the bathroom cause something felt really wrong with my foot. I checked it and couldn't move my toes anymore and I could only see the top half of my toes. To me, it looked like a colorful elephants foot. I somehow managed to go through the rest of the school day. That day, we went to visit the gym because I visited it every Thursday to say hi. We went and I said hi to the team parents like I always did when I first came. They wanted to see my foot. I showed them and it looked even worse. I couldn’t see my toes anymore and my foot had black patches on it along with the other colors of the rainbow on it. They were really concerned and told me to go visit my teammates and coaches while they all talked (with my mom). The adults talked during that time (probably about my foot) while I visited. They wanted to see how my foot was and everyone was really grossed out. The coach who deals with medical issues also said that it looked really serious and I should probably get it checked out immediately. After visiting, we left and when we got in the car, my mom asked if I wanted to go the emergency room. I really didn’t want to go even though I knew I had to. We went home, took our time, got something to eat, and I emailed one of my teachers to let her know and I knew she kept in contact with two of my teachers. After that, we left. At the ER, we waited about an hour then got in. They took my blood pressure and pulse. They were really high. My resting pulse rate was in the 100's and my blood pressure was high enough to where I would probably need to be on a medication for it. They said it was probably anxiety. We were put into a room and an hour or so later, we finally saw a doctor. He was very nice. He said it might be an infection and he went to take x-rays to make sure that my bones weren’t infected. The x-rays were normal. He said it looked like I had dermatitis and cellulites. He put me on prednisone and Keflex. He gave me some pain medicine to help me sleep. Then they said if it gets worse, come back. They didn’t want me going to school the next day (Friday).

We got home at 3 in the morning. The next day, I took all of my medicines I needed to and called my teachers to fill them in on what was going on. I ended up not eating the whole day also because of the prednisone. Then Saturday, I noticed I was starting to get a rash on my other foot and up to my thigh. It started to hurt once again. The RSD was coming back and it was worse than ever in not only my foot, but my shin too right below the knee. My right shin looked like I was wearing a sock because it was dark purple and it ended an inch below my knee like a sock and it hurt like RSD also right below the knee and down. I was suprised that the RSD could spread so quick. I also discovered an "interesting" talent. If I beared any weight on both of my feet, they turned all purple and black and hurt more. Okay...not the best trick cause kinda contributed to me going back to the er along with it going back into the left foot. My mom once again took me to the ER that night. They got us in and we waited in the room for another hour or two. By midnight, we saw the doctor and he wanted me to have a blood test to make sure it wasn’t an infection and he also scheduled me for an alter sound the next day around noon to make sure there were no blood clots. I had blood drawn and they read normal with the exceptions that RSD causes and the increase in sugar from me drinking a huge sugary drink :p They then said I didn’t have cellulites or dermatitis. They had me stop the medications.

Sunday afternoon, I went back to the hospital for an alter sound and they said it looked normal and there were no blood clots. The rash had spread up to my arms and they said it was an allergic reaction but they didn’t know what it was from. They scheduled me an appointment with an orthopedic doctor the next day. They didn’t want me going to school until they knew what was wrong just incase. My orthopedic doctor was out of town again so I saw another doctor. He said that my right foot looked like nothing he had ever seen and he didn’t know what to do for it. I started crying and I was so frustrated that he didn't even try to help. He said that he could try and schedule me for an appointment with his wife, a dermatologist, to see if she could help determine what the allergic reaction was from. We agreed and we saw her the next day. She was very nice and did the biopsy on my left leg to see what the less severe reaction was which hurt like.... yeah. Anyways, afterwards I got two stitches which I am terrified of for some reason. She said she would call with the results, but by the way it looked, it was either an allergic reaction or RSD. She called and said that it the minor rash and the purple shin that looked like a blood clot was really an allergic reaction to a drug, which she determined was the Keflex. She gave us more prednisone and told me to take it for 30 days and slowly wean off of it. We also scheduled another doctor appointment as soon as my doctor came back and he said that what had happened to my right foot was Steven-Johnson’s-Syndrome. It is a syndrome that leads to having bad allergic reactions that can be fatal. Thankfully, since the allergic reaction was to a cream, it wasn’t my whole body. If it were taken as a pill, I would have either died off suffication from the full body swelling or have severe permanent damage because my whole body would have looked like my foot. He also scheduled me in April to have a series of nerve blocks done 3 days in a row (leaving the catheter in and being hospitalized) and after each injection, go to intense therapy each day.

I went to therapy and back to school that Thursday in the wheelchair again. The therapy was very intense for me. On Friday, I ended up leaving school early because I felt sooo much worse, probably from the therapy. I got picked up and went home. My mom called the doctor again and talked to him on the phone. He scheduled the series of blocks originally for April, but he said it couldn’t wait that long and said for us to call him the next day because by then, he should know when the doctor could do it. He wanted it done very soon. I panicked. That Friday, my mom called the doctor when I was at school and I was very nervous the whole day. I quickly rolled into my science teacher’s room at the end of the day and tried calling my mom, but she wasn’t in her office at the time so I waited until I got home before calling her. She then told me that they were canceling the appointment because the doctor that was going to do it was out of the country. Instead, my doctor had another idea. He had a former patient that went through an intense therapy program locally and was nearly cured of her RSD. He said it was a less severe case because it never spread from her right foot, but the fact that she was nearly cured of it was wonderful. She is now able to walk again and run and do everything again. She has some difficulties here and there, but for the most part she is cured. He wanted me to go through it also. I would have to become homebound. Hearing that made me cry :(

That Saturday, the RSD returned back into both arms all of a sudden and it was hard for me to do anything. They couldn't do anything for the few days because they aren't open on weekends and I was going to start therapy that Wednesday, but my doctor said, after my mom called him about it going into my arms, to not go to school. The therapy was going good and after I learned to walk, I stopped crawling on my knees (as I had been doing since I broke my foot in June). A week later, if that, it spread into my right knee. It's doing better now there. Still a little slow at bending it, but its better. Then yeah. The end. I'm so good at ending stories, I know :)

Kwaker
05-03-2007, 02:17 PM
I'm new here, but I've been living with RSD since '93 from a work injury. I've done the fighting insurance companies (boy they can be a pain in the behind!), workers comp and SSA.
Seen many doctors (and many that were not very good or on the ball), many meds, blocks, and PT (which made mine worse.)
I live in WA but used to live in OR.
I've no human kids (yet) but do have parrots and outdoor cats and the ol' man.
The critters are sometimes all that keep me getting out of bed some days as they need me. Been great therapy:)
My RSD started in my left foot but has moved up the leg and hip and is doing it's damndest to move into the other leg.

DarkAngel
05-04-2007, 07:42 PM
:) Hello, I'm a Dental Assistant, who ended up with Carpal Tunnel Syndrome in both hands (mild CTS in the Lt. hand and severe CTS plus trigger finger in my Rt. hand which was unfortunely also my dominant hand) I had carpal tunnel and trigger finger release surgery on my Rt. hand in 3/06 and things went down hill after that! A few months after the surgery I started having severe burning pain and my hand was swollen twice it's normal size and turned bright red in color. In 10/06 I was diagnosed with R.S.D. and have been fighting Work Comp ever since (I.M.E. says it's recurrent CTS). My 3 doctors say R.S.D.

unrouley1
05-05-2007, 07:32 PM
hi all. i'm angie... i just turned 33 - wife of josh and mom of 3: talley (girl, 7), london (boy, 5) and scout (girl, 3).i was diagnosed with RSD about 3 days ago. i had shoulder surgery in march and had constant pain afterwards. the pain meds wouldn't work and i finally had a face-to-face with my doc about the pain that was burning a hole thru me! i had an x-ray and an MRI that showed the surgery was a success, but the pain said something different. i also had a purple hand and cold and numb fingers.

she told me i had RSD and sent me up to the pain clinic. the doc there said he didn't know... said 50/50 chance, but that he wanted to do blood work, a bone density scan and a shot in the neck. he said if the shot worked then he knew what it was.

well, i had the shot and it worked. i left the office without any mention of doing any other tests.

i'm really scared. i have a loving husband, but he doesn't understand how much pain i am in and thinks i just want attention. i am a very, very active person. i love any kind of sport and just play till my body stops. i'm scared that this is going to take over my life! i have been forgetting things. i have been talking strangely - i will start a sentence and then start the sentence over after saying the first 3 words like... i have to i have to go to the store.

can you guys relate to this?

i'm glad i found this forum.

ang

Jo*mar
05-06-2007, 11:05 AM
http://neurotalk.psychcentral.com/showthread.php?t=18345

sue k
05-06-2007, 08:23 PM
Hi,

My name is Sue. First let me say that I am so glad to have found this forum. I feel that I no longer will be alone.

I have had RSD Type ll for 8 yrs. All my life I have had a hip problem. After many docters and operations I heard the news I had been waiting for all these yrs. My Dr. agreeded that I needed a hip replacement. I was so happy. He told me my pain was going away. Boy was he wrong. A 4 hr. operation turned into 7 and when I woke up, my right foot would not move. They fitted me for a brace right away and said I should get better in time. 3 months later, the pain was getting worse. Burning like I was on fire. My foot would curl up with muscle spasms so bad that I would just scream while my husband tried to uncurl my foot. Well the years have gone by and I have just gotten worse. Its hard to walk, sleep, get out of bed, you all know what its like. The meds are so bad, but I need them to do "normal" things. I've tried to work, but had to stop 2yrs ago.

The worst thing for me is my family not understanding. My kids think I am a drug addict. Everyone says I need to just deal with it. Easy for them to say.
My hands are starting to go numb from typing. Have to stop.

Thanks for being here. God bless.

Sue

robin53
05-09-2007, 09:58 AM
Hi, my name's Robin, I'm a middle-aged male, single, living alone in a rural area of central Scotland, UK.

A few days ago I told my physiotherapist that, having done some research, I thought I probably have CRPS type I, and he agreed that seems likely. I've yet to discuss it with an MD. I'm due to have acupunture at a pain clinic on Friday when I might be able to have a short chat with a doctor, otherwise I'm due an evaluation at the end of the course of acupuncture, in a couple of weeks, when I expect to be able to discuss the big picture with a pain specialist.

The problem is in my left knee. I first injured it many years ago, but about 2.5 yrs ago it got hurt on a hill walking expedition and it's been getting worse very gradually ever since. I used to do a lot of hill walking but haven't done any since that incident.

When I say it's been getting worse I don't mean steadily: there's a cycle in which I rest and it gets better, then I get more active and it gets worse again, but the general trend is for the lows to be lower and the highs to be less high each time around.

A bit over a year ago I had surgery on the knee: debridement and decompression of the patellar tendon. The operation seemed OK (as far as I know) and the wound healed very well but then it seemed I was back where I had been before the op, except maybe a bit worse.

I saw the surgeon occasionally, and a physiotherapist regularly for a while, with no improvement, then eventually the surgeon noticed that my left leg seemed cooler than my right, and there was some discolouration of the skin on my knee, and he decided to refer me to a pain clinic and a different physiotherapist. This was towards the end of 06.

Unfortunately, neither RSD nor CRPS nor chronic pain syndrome was actually mentioned until a few weeks ago, so I was skeptical and paid for a second opinion and MRI. The scan showed nothing significant and the second orthopedic specialist agreed with the first. (It was unfortunate in financial terms but maybe a good thing in that it convinced me that there's probably no major mechanical problem.)

The pain specialist decided to try acupunture first. I had three sessions, from which I noticed no benefit, then they switched to electro, and I thought my knee felt slightly better for an hour or two after. When I said that, they decided to increase the course from 6 to 8 or 9 (not sure) sessions in total, on a weekly basis, so I'm due 2 or 3 more.

I've gotten the most info from the physio, who when I first saw him mentioned "chronic pain syndrome" and took the time to explain how nerves can get "activated" so they keep reporting pain even when there's no good reason for it. It's only looking back that I can see that's what the specialists and my GP have had in mind.

My actual pain levels are not that bad. I'm not using any prescribed meds just now. Most days I take just one 400mg ibuprofen for comfort in the evening. But the activity level I have to keep to is very low. I stopped working towards the end of 06, I get food delivered, and, apart from medical appointments, get out just once most weeks, to see my elderly and frail parents on a Sunday afternoon. I spend almost all day, most days, sitting in my armchair with my legs raised, using my laptop, reading or watching tv. If it wasn't for the laptop I'd go crazy! I have a couple of websites of my own and run ones for other people. Also, as I was a self-employed computer technician and still have ads in some directories, I get regular calls from people with pc probs, and do what I can to help them over the phone.

My big problem right now is that, when I work on the laptop, my leg muscles tend to tense up, which sets off the knee pain. It feels very like a muscle or tendon strain, and if it wasn't for the temperature and colouration anomalies, and the clear MRI, and the time it's lasted, I'd be quite sure that's what it is. (It gets inflamed sometimes too, but that could happen in either case.) It seems like I only need to avoid putting any strain on it at all for maybe 3 or 4 days and it would get better -- it has done in the past, in the short term, before "going" again -- but it's very difficult to reach that level of inactivity, living alone, and it seems to take less and less to set it off.

That's probably enough for now. I'd be particularly interested in hearing from people with similar symptoms, and those who have strong views on whether I probably do or don't have RSD/CRPS, but any comments will be welcome. Thanks for reading this far.

theoneRogue420
05-09-2007, 05:43 PM
Hi Robin :) I just saw this here, wanted to say that I responded to the same post in the new members forum, if you care to read it. I got all confused when I joined, lol... I have several posts that aren't quite where they ought to be, at least you are doing better that I did! ;)

frogga
05-11-2007, 08:14 PM
Hey Robin,

Just wanted to say I am from your side of the pond! I live in SE UK. My gosh, someone within 500 miles of me!! Sorry you have to be here!!

Love

frogga xxxxxxxx

robin53
05-13-2007, 03:27 AM
Hi frogga, nice to meet you! Maybe we'll be able to help each other out with UK-specific information from time to time. Not that I know much just now. And I'm sort of hoping I don't have to learn too much!

theoneRogue420
05-14-2007, 07:13 AM
.... if I should move my intro post to this thread.

When I first joined, I posted my intro thread in the "new members" forum. It never dawned on me that each disease would have it's own intro thread, don't ask me why, lol.... it certainly makes more sense.

As I seem to be spending a lot of my time in here, should I move it or rewrite it here? I have talked with a few people in the chat room who didn't know my story... nor could I find their intros either. I just wanted to know if it would be better or more helpful if my intro is in here.

robin53
05-14-2007, 08:59 AM
Hi Rogue, I was advised I could just copy (Ctrl-C) and paste (Ctrl-V) my intro from there to here, and that's what I did.

lisalovesbilly
05-21-2007, 01:20 PM
Hi. I am Lisa and I am new here. I developed RSD in my left leg two years ago and it went away after eight lumbar sympathetic blocks. In September of this year, I began seeing my orthopaedic surgeon who has performed surgery on both of my knees since 2003. I had twisted my right knee in late July and the pain was not going away. I was reluctant to see my ortho as he had previously informed me that eventually I would need total knee replacements. I have been using a crutch (sometimes two) since October. My ortho put me through tests, physical therapy, more tests and steroid injections. In January he referred me to the pain center and suggested I had RSD again. I was floored! I didn't know that RSD could come back and that it could be on a different part of the body. And if he knew, why did wait so long to fill me in? Sure enough, RSD again. This time it is much worse for me. Ten blocks and no break in the cycle. I just had RF ablation on Wednesday and my pain is worse. I have a supportive family (as best as they can be). I feel rotten about what they have to go through because of me. I can't tell them how bad things really are, I don't see how they could handle that when I can't really handle it. My mom is great and is my best friend, so I try to protect her. My husband sometimes suggests that I try to "blow it off" (regarding the pain), so I don't tell him that the pain is so bad that when I am in bed I am begging to fall asleep and that when I wake up, I am severely disappointed because I realize that I have to live another day like this. That is very selfish of me, I know. I feel so two-faced, giving them my fake smiles all of the time and holding back my tears until I am in the shower.

After reading all of your stories, I feel like I am just a big baby for acting and thinking this way, considering what you all have endured. I also have bipolar which for the most part is well-controlled on meds, but sometimes it feels like the depression wants to take over. How do you all do it?

Jo*mar
05-21-2007, 01:28 PM
We started the intros on most of the conditions forums first - but as the site grew there were many new members joining that were new to forums and not sure where to post first so we made the Main Intro forum for new members.

You can copy your first post to here, or make a new one, or just put a link to your first intro post, which ever way you like.

Or I can copy/paste it here for you, just send me a PM if you want me to do that.

theoneRogue420
05-21-2007, 02:10 PM
Hi everyone I have been looking far and wide for a place like your little community here! What a relief to finally find you.

I was injured on the job in Sept 1992, and the insurance company waited until Aug 1993 to finally operate. It was immediately obvious that something had gone horribly wrong. However, due to the usual work comp junk, they refused to admit it. Therefore, my diagnosis was delayed almost a full year.

I chased treatment all over the western U.S., even took part in a gov't trial, all to no avail. The only thing the experts thought might help would be a spinal stimulator implant, but of course I couldn't pay for it on my own.

I am now in my 14th year of RSD... it has spread to encompass both ankles and both knees. Lately I have been getting strange feelings in my wrists and elbows as well, so frankly I am terrified.

I have recently been diagnosed with epilepsy, as well. I am still unsure how that happened, lol! But Dr. suggested the rsd might have caused it.

I also have aids, so I am unable to go out much, for fear of infections from others. All I have wanted these past few years was a way to chat with others who knew what I was going through... and I seem to have found it!

I look forward to been an active member of your community.

jennyk38
05-25-2007, 06:47 PM
hello, my name is jennifer and i was diagnosed with rsd to right shoulder, arm and hand just 4 wks. ago. My initial injury occurred 3 yrs. ago. I got hurt on the job and tore my right rotator cuff. I had surgery 10/04. after surgery i developed a frozen shoulder and needed a second surgery to remove excess scar tissue but because it was a work comp injury it wasn't approved for nearly a year. had second surgery 12/05. after second surgery i never regained strength and was never pain free. complained about it all the time but basically was blown off by docs. finally, about a month ago i had a severe attack of pain. it felt like someone was crushing my arm and holding it in a fire and i noticed mottling to the back of my arm. my doctor took one look at my arm at diagnosed with my rsd. unfortunately, my disability benefits had already ended. soooooo, my ortho doc referred my to pm and i have been paying everything out of pocket until i can get my benefits reinstated. i am currently taking, zanaflex 2mg bid, neurontin 300mg qid, elavil 10mg at bedtime, clonodine patch, lunesta for insomnia, and oxycodone for breakthrough pain. i also take a buttload of vitamins and supplements that i swear help me just as much as meds. i also have a tens unit that i use. i had a stellate ganglion block almost two weeks ago that didn't do a thing except cost me $312! That was one of the most painful things i have ever experienced in my life! anyway, that's my story and unfortunately i have to stick to it:cool: hope to hear from any of you soon, jennifer

NikonKid
05-28-2007, 05:28 PM
So nice to meet all of you, I've learned so much already just snooping around in here. I'm Jeanne, formally diagnosed with RSD in both hands Fall 2006.
Hindsight being 20/20 I think this has been going on longer than that.
In the beginning of 2005 started getting alot of pain and weakness in the hands, went through the joys of electrocution and Ortho diagnosed me with Carpal Tunnel Syndrome. He wanted to operate then but it wasn't in my dayplanner for 2005 so I opted trying to put it off as long as possible.
I had injections in both hands to reduce the swelling on my hands (this is where the hindsight comes in) the shots would render me useless for a few days. It felt like they were broken and soooo sensitive to touch. I have also learned since then how to properly communicate with doctors and really express my pain because when I told him they hurt he said some people have more pain than others. I thought it was just part of the process.
I used to have such a high tolerance to pain, had all 4 of my children naturally, never took days off from work...seriously I chopped wood when I was 9 months pregnant :)
Last summer I just couldn't take it anymore, my hands were turning into the human claw so gave into the surgery. I had carpal tunnel release on both hands, two weeks apart. Did OK for about a month and then the rest is history. What was supposed to be 2 months off from work has turned into Long Term Disability :( My physical therapist is the one that actually first mentioned RSD to me. Since then I've been to 2 Ortho doctors, 2 neurologists and my PM doctor (who's the best of the bunch).
I started seeing the PM doctor in January of this year and he gave me my first stellate ganglion block at my first appointment with him. He has always been aggressive with his therapy and talked about SCS from the start.
I had 2 blocks withing a few days of each other and absolutely no pain relief. When I had the second block my arms got really mad and fought back, terrible aching pain and ice cold. I was put on blood pressure medicine to help with the temperature and we decided no more blocks.
Febuary it spread to both feet, they had been getting numb for a couple of months but the burning and aching pain literally happened overnight. So I was sent for more tests to make sure we weren't chalking everything up to RSD. That's when I was told Cold RSD and SCS was off my list of options.
I'm very stubborn with this little monster inside of me. I try to take short walks daily and have upped my visits with my therapist, but this is such an isolating illness. The Spoon Story was so simple but so true.
I'm trying really hard to find a way to accept this and fight it at the same time....to have RSD be a part of me without it defining me.
So thank you all for being here and sharing your experience, strength and hope....it helps me more than words could ever explain.
Jeanne

skj1519
06-06-2007, 01:11 PM
Do you experience any edema, white waxy skin or abnormal hair or nail growth??

InHisHands
07-16-2007, 09:35 AM
Do you experience any edema, white waxy skin or abnormal hair or nail growth??

Sorry for the really late reply, but yes, some of us experience all of those symptoms.

flippnout
07-26-2007, 01:42 PM
Hello my name is flippnout. I have been on these boards for several years I think.....well we know how that goes right.

I have RSD and TOS, man I feel like this is AA nope never had a drinking problem had a friend who did, so I went with him well drove him there. So I have these conditions and I refuse to get down I have been there and feel the negative thoughts and lost feelings make it worse sure I have the pain yet I just want half the pain thank you LOL. I do have my time but I have got to learne to beat it down, we being A types should know how to control this thing, that is why we are A types right.

So I have this WC thing going and SSDI going wich I'm sure others do to, my doc is on my side so thank you docs! I have got to come to terms of finding a new life what to do now! with my life I can no longer work but I can do something like to volunteer so I have to think, I anc start doing ART again paintings wich would be good therapy and I must start to walk more, darn lyrica is making me gain wieght...

I live in the center of the USA and I like it here I wish I knew others here with this,but not many I guess I am treated at a teaching hospital I'm sure one day I will meet some one for talking. Till then I will be here if you dont mind...

MarkB
07-26-2007, 04:57 PM
I was in a serious car crash in Jan. 1996 with significant damage to my left arm +++.

I haven't had any implants, but everything else that has been tried hasn't worked.

It is hard to describe to others the stunning nature of this pain.

JOAN_M
08-29-2007, 09:02 AM
got rsd july 5, 1996 from my third hip replacement surgery.
i was 44 years old.
DX by a rehab specialist April 1997, 9 month later.
joan

Jo*mar
09-09-2007, 11:17 PM
This link goes to the thread -

"when did you get your initial rsd/crps dx" http://neurotalk.psychcentral.com/showthread.php?t=26282

It ties in with the introductions thread and will make it easy to find.

johnthepainter
09-10-2007, 09:51 PM
Brief History for my wife: She was involved in a farm accident in December of 1995. As a result of this accident, she shattered her entire left elbow joint. From this original injury, came the on slaught of viscious neuropathic and orthopedic pain. Marilyn's left upper quadrant was the primary RSD focus. Over the years, the RSD pain has migrated--the migration was not rapid, but after more injuries, a couple of back surgeries, and most recently a tendon repair operation, she is a mess.

So, it's 12 years down the road and her pain is getting worse and more intense as the months pass. She is wearing down like an old alarm clock spring. I can see the fight in her spirit is diminishing. Marilyn takes an anti-epileptic for pain control. That's it. She has tried various other approaches, non which provided satisfactory.

A surgical sympathectomy, directly recommended by Dr. Schwartzman at the time, was done with moderate success. She was relieved of much pain for about 18-24 months. The pain came back as we knew it would. Marilyn said the relief for that time frame was worth it. Yes, the nerves that were severed did grow back, but the pain didn't appear to be any worse than prior to the sympathectomy. BTW--we researched the heck out of the procedure before deciding it was viable for Marilyn.

Marilyn also gets a Bier Block about every 8 or 9 months. Sometimes she can last a year after having the Bier Block. But Marilyn always knew that somewhere down the line, unless a cure was found, and that isn't in the cards yet, she would have to strongly considered an scs or pump situation for herself.

She is not a candidate for any ketamine infusion therapies. None, not outpatient, not inpatient, not Schwartzman's Germany bound procedure, not Harbut's protocol. Her heart reacts very badly top ketamine in any form. So that avenue of hope for Marilyn is shut out--much to my chagrin and hers as well.

I don't want to go on and on. As part of our research we would very much appreciate input for all those who have experience with any type of scs unit. We would also ask those who respond to let us know which manufacturer's unit was installed.

Thank you all for your kind responses so far.

johnthepainter (I am a house painter by trade)

Flavio
09-20-2007, 01:03 AM
Hi everyone,

My wife had a car crash and had to undergo minor surgery on her left hand, due to a broken bone.

That was 22 days ago.

After having heard from 4 different doctors that the swelling and the pain would go away, a fifth doctor diagnosed her with CRPS.

Being diagnosed is both scary and relieving. Relieving because we read a lot about it in the last 2 days and know what are the next steps. Scary because the outcome is unknown.

One first question would be: what is an early or late diagnosis? She will start OT 23 days after the accident.

What we are most afraid of are the crippling effects of CRPS. Her fingers are already stiff.

Please, if you have been through that, give us a light. Thank you.

By the way, what an year... last june we both were diagnosed with HADD... but we are even proud of being so hyperactive...

corgichic
11-17-2007, 01:57 PM
Hi. My name is Julie and I am emailing from upstate NY. Having been dealing with a workman's comp inj to elbow & shoulder that never healed and I have recently been diagonsed with rsd. Looking forward to talking to people who understand what I am going thru.

Take care

Julie

Accidentwalkinghere
01-03-2008, 02:59 PM
Well im a high school student and i developed RSD last year. I had a a ski accident and i had gotten a fracture . I have went through numerous doctors and have gotten no results . About a month later i was diagnosed with RSD. Nothing helps it at all even vicodin etc . I honestly feel as if no one but myself has any clue how painful and hard this is to deal with. People in school always talk about it but they have no idea what they are talking about. This has effected my life in a major way i cant play the sports that i love anymore and its tough. Just as i feel like it might get better it dosent and i think im starting to have a problem with my knee HELP ME Any advice?

loretta
01-03-2008, 10:02 PM
To Accidentwalking here-high school student.
My name is loretta,and I'm so sorry you have RSD. It's important that you understand the many symptons of RSD. The more you know and understand what is happening to you will lessen your fear and get control of your health.
Many Drs. really don't have a lot of knowledge about RSD and how to treat it.
People are different in their reaction to medications and treatment. You are in the best place to get procedures that can put you in remission. If you get treatment in the first 6 months you have a good change to get blocks that stop the cycle of pain signals going to your brain. I did not get an accurate diagnosis for maybe 3 years......then the pain signals become independent pain signals. Do a lot of research before accepting a form of treatment.
Ask you Dr. how many rsd patients he has treated. If you decide to get a block, it's done by an anethesiologist. Ask how many blocks he/she has done...I'm so sorry you have this monster of a disorder. Your right, it's difficult for anyone to really understand, even family. That's why this forum'is so wonderful. There are so many wonderful people, young ones in school and college. The people here have a tremendous amount of collective knowledge..Depression goes along with rsd, because the disorder affects the limbic part of your brain that controls emotions. It affects your blood pressure both high and low, your circulation, anti-depressant meds are effective for nerve pain. I am on two different ones. Also anti-seizure meds are effect on nerve pain. Neurotin has been used for years. I was on it for a long time, but I've switched to Lyrica and it is more effective. Besides Vicodin, I also take an anti-anxiety med. Also a sleeping pill occassionally. Two different blood pressure meds. I didn't have blood pressure issues before rsd. My daughter and I snow skied, water skied, played tennis (really we were fanatics) worked out together at a club. It is such a loss to loose being able to do all that. It is life changing. I went thru a serious grieving process. I have full body rsd now for 12 years. Mine started the day after surgery-I had frozen shoulder. I went thru about 100 physical treatments to get the range of motion back. A few months later it moved to the other shoulder- more therapy. Then my left hand was injured-a nerve pull while water skiing. more therapy so painful. use of my fingers is limited. it's like a frozen claw. then moved to other hand then moved down to both feel and lets. About 6% get full body. Where do you have rsd. what treatment plan do you have? Another site that answers many questions is rsdrx.com The puzzle part is very good. Having the right Dr. is so very important. Mine is just wonderful.He is a neurologist, phmacologist, and a phyciatrist. Please let
us know how you are doing. You can share your true feelings, it is such an adjustment in life and we can't do it by ourselves.Everyone here really cares.
Sincerely, loretta jewell from arizone.

imgoodnu
01-06-2008, 08:09 PM
Hi all,
I have had RSD for 10 years. Had minor knee surgery and BAM - RSD in the left knee, then leg, then onto the right knee and leg. I was out of work for 3 years...cou;ldnt walk, drive or anything else. Had to undergo PT to prepare for surgeries to rebuild both legs as everything had atrophied from the RSD. in 00 went back to work and have had flare ups since, usually managed by meds but when it gets real bad i get the blocks. had a block on 12/24 (merry christmas to me :wink:) and will be having another on 1/22....thought I'd see what folks on line had to say and what they thought and felt about RSD....

For me, I make the most of what I have everyday and go to PT in the pool 2-3 times a week after work to keep my legs moving....taking cymbalta for the first time for the RSD....just increased from 30 to 60 and the sweats are slowly starting to subside. Have bumps on tongue from the dry mouth but hope they will go away soom....tried Lyrica - side effects were too much...used to take dylantin, baclofen and flexerill but had to change meds because my body got too used to them.
So thats my story - I am always interested in hearing others and would be happy to answer any questions folks new to this disorder may have....I have always considered myslef pretty lucky as my neurologist also has RSD so he can always relate to what I have to say and how I feel.
In good health to all,
Lisa

loretta
01-14-2008, 01:18 AM
Hi JennyK38,

Hi Jennifer, So Sorry to hear about your injury at work and having RSD now. I had breast surgery, both tumors benign, but also got frozen shoulder following the surgery. My arm swelled up, followed by the frozen shoulder. It probably took 100 physical therapy treatments plus massage therapy to get full range of motion. Ortho Dr. wanted to operate, but said no. Shortly later, it moved to the oppposite shoulder and froze. Not so many treatments, got an earlier start. About 5 years from the surgery, was water skiing and pulled nerve in the left hand. Was misdiagnosed with arthritis and bad pain. Finally diagnosed with RSD and back to therapy. Left hand is permanent claw, Then right hand rsd then both feet and legs. full body plus trigeminal nerve pain and half my face. I have finally found a wonderful Dr. Have switched from neurotin (3200 mg to Lyrica 400 mg. The Lyrica is much better for me and lessens the nerve pain. Am on Ambien Cr for sleep. The Lorazepam helps with anxiety and two different blood pressure meds and two different anti-depressants that help with nerve pain. I used to have the electrical jolts bad and spasms. High blood pressure and then sudden drops. This disorder really affects so much of your life, memory, depression, sleep deprivation, energy level,the pain is unbearable . I had a tens unit too Jenny, Swimming is one of the best things that help me. I hate the weight gain from the meds, and the
exhausation from the meds and depression. I'm afraid to try to scale down, because I had a bad drop in pressure and passed out for over an hour. B/P
was 60/40 4 days in icu. I was able to drop down two vicodin a day because the Lyrica was more effective for me than neurotin. This forum and helped me too with the isolation and missing so much my old active life. It is a real adjustment in life and missing all the things we used to do. I try and be grateful for what things I have now, a husband that does so much-shopping, drug store, housework. etc. Our daughter is married-7 years now and just moved to Chicago. Life is full of change isn't it. I'm 59 and guess this has been with me for maybe 14 years. I have a good friend here in AZ with full body RSD from car accident. Jennifer, are you on SSDI, I read somewhere, it's easier to get now. If I every try, Ii'll use an attorney. Jennifer, hand in there, there is a lot of understanding and knowledge on this forum. Lots of encouragement, I'm trying to exercise more and loose weight. It's really hard emotionally to gain so much weight and not really have the energy to work out. I'm starting out slow and adding a minute or so a day.Please know we are all here for you. Sincerely, loretta jewell

Jodee
02-04-2008, 06:58 PM
Hi all My name is Jo i was diagnosed with rsd in may of 2007. I started with a stress fracture that healed and the rsd set in. I had a breakdown with the diagnosis of this, but am much better. I am on cymbalta, and kepra for the nerve pain. I am without pain meds trying to this without .. In the process of finding a new pm one that doesnt have assistants in every corner lol. I had one lumbar block in august. I have five children ages 20,19,13,11, 6.. So far its been a long haul but we are managing much better. Hope to meet you all.

JoJo

kittygato
02-06-2008, 12:47 PM
My name is Stephanie. I was recently diagnosed with RDS, but I am in denial.
I was in a car accident in November. I was going straight through an interesection and the other driver turned left in front of me. He was unlicensed, uninsured and undocumented. Unfortunately, I only had a $15k uninsured motorist policy. My left arm was injured somehow in the accident. I dont remember what exactly happened to my arm, but it turns out that I only sustained soft tissue damage. My left hand has become increasingly more painful. It goes from extreme hot to extreme cold. On bad days, it turns a lovely shade of purple. It is constantly swollen and hurts all the time. I am seeing a neurologist and have been throught physical therapy. I am currently on Gabapentin, Naprosyn and Percocet. I keep thinking it is going to clear up on its own. I keep thinking i will wake up one day and it will be better. I struggle with accepting that RSD is the real problem. The neuro has ordered an MRI to find out if there is damage in my neck/spine. My neuro does not seem to be in any kind of hurry to help with the pain. In fact, he isnt even the one who prescribed the Percocet. I had to get that from my PCP. I guess I am just looking for some answers and explanations. Hopefully, I will find both here. :)

heatherg23
02-09-2008, 01:34 PM
I have to say thanks for your story. I was trying to find people whom has had the burning pain travel through other parts of the body. I have a lawsuit going because of an accident that caused my rsd. It started in my feet and achilles tendon's. 5-6 months later I also had severe burning pain in the back of my calf, thigh and my butt burns as well. I can't sit for very long, stand or walk. I actually lay in bed all day. I have to find a way to prove that rsd can spread. Just sitting here typing causes to much pain.

Thanks again
Heather

Hi,
My name is Diane, I have been diagnosed with RSD since 2/2002. I fell in the parking lot at work and broke both the tib/fib 2" above my ankle in my left leg. I had surgery to repair the damage-2 plates, 19 screws. 1 screw was thru both bones as the tendon that holds the bones over the joint was compromised. I had another surgery 3 months later to remove that 1 screw, then in Oct 2002, they took the remaining hardware out thinking that would resolve the pain. Guess what.. it didnt!

I was finally diagnosed with RSD and have been trying to find a way to live with it and work with it. It has been increasingly more difficult to work the 40 hours I am restricted to. No ot no weekends.
My medicine regime has constantly changed to try to control the pain. So far, it is from my mid calf down to the tips of my toes. I believe it is beginning to crawl up my leg to my knee as I have burning pain more prevelant at night in that area now.

Luckily, I have had wonderful QRC's and doctors. I was diagnosed about a year and half after the accident. I am looking foward to participating in this chat area for both support, laughs, direction, and anything else anyone can provide that will help living with this much easier.

My family doesnt quite understand. My grown children are concerned about the amount of medicine I am taking, but my oldest son (28) attended my last doc appt and seemed satisfied with what he heard. (He lives in Italy and was finally home for a visit so he was able to go with me finally). My youngest son (25) still gives me some grief about the meds. It is difficult to explain this to someone that loves you and hates to see you like this. Hopefully one day, my youngest will be able to go to the doc with me as he is my emeregency contact should anything happen too me. My mom, well, she hears news stories about the meds I am on and calls me thinking that I am going to die any day if I dont get off these meds--but somehow I seem to calm her down letting her know that I try to keep on top of all the medical information about this as I can.

I am looking forward to gaining more info and sharing what I know if I can.:icon_wink:

nopainever
02-10-2008, 12:14 PM
Here is an article that you might be interested in...

http://www.rsdhope.org/ShowPage.asp?PAGE_ID=79

Sorry to hear that you have RSD also. My thoughts and prayers are with you!

:hug:
Heather

mtmelody
02-17-2008, 09:54 PM
I'm sure you've heard this before...but I have to tell you I am impressed by your tenacity. I feel for you and I will keep you in my prayers. I just found out my son (21) has rsd. It is very hard watching him change. You give me hope and I wish you the best. How is your mom?

mtmelody
02-17-2008, 10:45 PM
I feel for you. I am ashamed to admit that at first I worried that my son liked the meds a little too much. I DID NOT understand. I apologize to all of you out there who have your loved ones questioning your issues. My son is just 21 and I think I was in denial "Not my BABY!!!"
Well I hope the medical profession catches up soon, because this is so real, so important, so life changing and frankly...I'm mad.
Please excuse me for venting a little...this darned thing (rsd) makes you feel alone. Does any one know how to find people who suffer with this in their area? I live in Sterling CO, (NE Colorado)

Lissa_K
02-19-2008, 01:35 PM
Hi. My name is Melissa and I was diagnosed with what my ortho called "mild" RSD about 7 months ago. I fell and had a tiny fracture on my fibula at the spot where the nerve wraps around the bone. I was put in a walking boot and told to do "light duty" at work. About a week later I went to the ER because I couldn't feel my foot and my aunt (an RN) couldn't find a pulse. The attending mentioned a possibility that I could have RSD and that I should ask my ortho to look into the possibility. My ortho blew me off saying it was way too early to consider RSD. A month later I was still having burning pain and now I couldn't feel my two outer toes at all. He then conceded to treating the RSD with PT, but no meds. To this day the only serious pain med I have taken was the 2 week supply of Vicodin I got at the ER when I broke my leg! I have my good days when my only issues are the numb toes and the hairy legs (when I can actually handle the burn of shaving my leg, I cut myself too much and don't realize it... So I don't bother most of the time), and then I have my bad days when I feel like my leg is being dipped in molten lava and then rolled in thorns. I guess I was lucky that it was diagnosed so quickly, but I didn't get any real information on it. No one told me it could spread. No one told me it could worsen over time. The more I read the more terrified I become and that horrible sense of hopelessness creeps over me. Because of my uninformed state, I signed a settlement with the insurance company that released them from any further liability. I was off work for 3 months and I was so desparate to pay bills, and my PT and ortho both told me I was fine. Now I'm not sure what I'll do. I can't afford to see a doctor and even if I got insurance, it wouldn't cover a "pre-existing condition".

KathyWP
02-27-2008, 05:16 PM
for those of you who do not know me I have had rsd since Feb, 1995. I was lucky they caught it early and it has not spread alot. My story (be warned it's graphic) is on my website click the link under my siggy. I am sorry so many suffered from rsd and hope one day like one of my docs used to say, "they'll find the little buggerthat causes rsd in the brain and zap it! And pain will be no more." Wouldn't that be great.

Lindecker01
02-28-2008, 03:37 AM
Hi everyone,
I have had RSD over 11 years. It started in my right hand then crossed over to my left hand then down to the right foot then to left foot. Today the doctors say RSD/CRPS wholebody centerlized. I cannot take pain medication and I suffer with low blood pressure and heart problem so almost every medication is out for me. I get Cervical and Lumbar Epidurals and Botox (Myoblock) injections every 11 weeks. This treatment works for me. Without it I have four limb sever flares and I get Kidney involvement, and I experience vomiting and bowel shutdown. Sometimes the pain gets so bad I have pain seizures. Doctors say my pain tolorance is higher then my brains and the brain has a safety switch that goes into siezure when it is toooooo much. So I guess you might say that I am very strong in a sense. Anyway I am new to this forum. I was here in 9/07 but haven't been back until now. I have upcomming heart proceedure in April 2008. Was wondering if anyone has had a heart ablation for WPW. Surgery is very scary with RSD and on the heart I am a bit scared. My service dog is helping me deal with the stress I think he feels it. He is a yellow lab named Hoss and he is also a medical alert dog. Anyway there is my introduction. It is late I better go. Take care all.
Lindecker01

heatherg23
03-01-2008, 02:43 PM
Hi everybody, hope every one is doing well. I had a really FREAK accident and that's why I have RSD. I was having an MRI done. This was a sit down MRI. They have new machines these days. It's confusing but the technician wasn't paying attention to where my feet were, even though he asked me to lift them, and the machine (that was moving me forward) went over the back of my feet and up my achilles tendon. Both feet. My feet got jammed under. Something that will haunt me forever and ever. I got the same RSD diagnoses from the 4 doctor's I've been to. After 2 failed nerve blocks and loads of medication I had a spinal cord stimulator implanted. I had the battery implanted in my butt. It took me 5 miserable weeks to recover from the first surgery. Then a few months later I had it moved up my spine. This was done because the pain had gone up the back of my leg and butt. I felt like entire leg, foot and butt burned, like my skin was on fire. Then a few months after that I had the stimulator taken out since it helped my foot pain but my leg pain continued. My 4th doc thought the stimulator was causing the pain in my leg. Well, he was wrong. I know the newer pain is RSD, it just spread. I realized that after the burning pain in my right foot & achilles tencon came back. It was like a puzzle had been completed. So between the months of Feb - Oct 2006 I had 3 major back surgeries. I'm extremely bitter :). I went back to my doctor after the pain came back and he said there's nothing to try you'd done everything there is. I already knew that but it's hard to hear.

Talking about my frustration keeps me in check.

Thanks for listening...........Heather

kinzkid
03-11-2008, 11:05 AM
Feel free to post your story, your RSD history, or an introduction to the forum members.

Welcome to the RSD/CRPS forum.

I am very fortunate to have had my RSD detected early; one month post-injury. I cannot imagine having gone another day without any validation of the severe pain I was in. I felt like my doctors messed up by not finding it sooner so I greatly sympathize with all of you struggling through each day.

I also think it is important to tell some cases of early dx so some who receive early diagnosis aren't scared away from these sites. In this manner, we can call benefit by knowing what worked quickly and spread the word to more friends and doctors. When I first received the diagnosis; I stopped reading a lot of these websites as I got really scared. I still am but know that with my early detection I am in a much different place and thank god for my miracle.

I dislocated a 2nd or middle toe; a little traumatic of an er experience; needle all the way through foot; dr tried to unsuccessfully reset the toe a couple of times w/o bracing and b/4 novacaine set in.... However, heard it eventually pop in and he said I would be driving the next day; sent me home w/o crutches. Well I couldn't walk and the orthos (I saw a few) kept telling me it's a painful injury and come back in Mid March (My accident was on 2/5) Thank goodness for a podiatrist who referred me to a neuro and gave me a script for an MRI. She told me I had classic RSD. My foot had blown up. I couldn't flex or extend it. It was locked in a 90 degree angle. I could not feel or move my toes. It was red and blue if I extended it down. I could only use crutches for 45 seconds. My only experience was a knifing nerve pain that occurred all day and night. I was a wreck. I was taking sleeping pills, pain killers...

Most people were like come on, a dislocated toe, suck it up and get better... I have a friend who said, go to more doctors till someone gets it right b/c this is not right. People kept saying how many drs are you going to go to and my friend said who cares, go to a 100 if you have too. Think of your children, you would do the same for them, do it for yourself.

So I was dx'd on a sat. I went for an MRI on Monday that revealed a neuroma and saw a neurologist that same day who confirmed the RSD. Then on Tuesday I spoke with my podiatrist about the MRI, who said we are not going to worry about the neuroma b/c the real issue is the RSD and that may subside if we treat that first. (Another dr. may have performed surgery on the neuroma; casted me and I would have been another six weeks out b/4 getting a true dx). So I begged and got into a pain managment center (called and called and kept calling till I wore them out to fit me in) on Weds. and insisted on an appt and had an injn to the spine. Get knocked out. If I didn't I would not have been able to lie on my stomach due to the pain in my foot. I still sleep on my back.

My husband thought we should just do a consultation first as he was nervous if the dx was correct and about a spinal injn) I felt confident with the doctors b/c I called every friend and made them call everyone they knew including drs to get the best center for this condition in my area. Fortunately, for me my RSD is sympathetically mediated, meaning after having the block my foot immediately responded and I could move it, flex, extend, wiggle toes slightly, I could feel it. I cried I was so happy after. Then I just went to the closest PT place. Didn't have time to pre-schedule. I begged and said I hadn't walked in 4 wks (the truth) and the dr said PT was critical especially right after the block. I have a wonderful compassionate PT and am now 1 week later walking with a crutch. My foot is still very sensitive, larger, went from a 6 1/2 shoe to an 8 on my left foot. Sneaker feels very heavy. But with a padded shoe I can now one week later stand ony my foot. It is amazing. I am having a block again tomorrow (one week later) and hope with PT to have this in remission. The injection has no steroids or corizone. I don't have the name in front me but it begins with a b.
My doctor truly believes that I will be in remission after this next shot. Of course I will have to be careful. My foot is still tender but it has come an amazing distance. When I say my PT 2 days later; she was amazed at the rapid healing. My foot is getting definition; the coloration is essentially normal; each day I could move another toe. I can small shocks in the foot especially with weight or trying to walk normally but I am optimistic that I can "beat" this enough to live a careful painfree life. But education to all is key. For that reason, I think my story is important, but it does not take away from all the pain that the rest of you have on a daily basis. So I hope that I have not offended anyone and I am not underestimating the power that this condition can harm one.

Clearly knowledge and transmission of these cases is power. I will post a letter that I intend to send to doctors in my area (including of course the ones that I saw). If anyone likes it, feel free to copy it and send it along. If it educates one more doctor maybe one more person will be diagnosed early and have a better chance of a quick recovery and entry into a life of remission.

Good luck to all and may this message empower someone who is pondering whether or not this condition is present or whether they should continue with local injections as opposed to the spine. Ask around for the best doctors; ask the doctors who they like best and then call those doctors to see who they go to or refer patients to in pain managment and anthesiologists.

Lisa

not2happy
03-30-2008, 01:52 PM
I suppose one of these days I should do a post here.

But I am still in the bitter/denial/ticked off mode about this RSD/CRPS stuff.

I was dx'd by foot surgeon last December. I absolutely hate it.

clove
05-13-2008, 12:28 PM
I have had RSD now for about 7 years. It took 4 years to be diagnosed and the only reason I think I was is because my FP was so aggravated with me he sent me to a pain DR. My Family and friends try but don't really understand the amount of pain especially when I have a "flare up" as I like to call them when the pain is so unbearable I can not even be outside with a light breeze. i have never heard another DR or Nurse or person for that fact that I met that has ever even heard of RSD and its very frustrating.

moey1997
05-24-2008, 05:21 PM
May God bless you MiePie.
You are so right. Without Gods love we are lost ! May you find peace from your pain and loving support and friends to lighten the way~~~ Im here if you ever need to talk

:winky::grouphug:

janism
05-29-2008, 07:52 PM
Hello Everyone,

I'm new here but not new to RSD. I took a minor fall inside my home three years ago that resulted in RSD in my left knee. Unfortunately nobody recognized it at the time and rather than treating the RSD they replaced the knee with an artificial joint. That was BRUTAL!

Have spent the last 2 1/2 years searching for and trying various treatments and went thru 6/7 doctors in that same timespan. I have a spinal cord stimulator that gives me some baseline relief but nowhere near enough to have a decent quality of life. A normal day to me is a 7-8 with pain ranging into the 9/10 levels whenever the barometric pressure drops.

Am still looking for a treatment that will get me down to a 5 - which is where I figure I'd be able to have a reasonable quality of life.

GJmom
06-02-2008, 01:55 AM
Hi,
A little about me!
I got RSD when I was 15. It started in my right foot/ankle and is now in my right wrist and hand, and I get flare ups in my left leg as well.
I really have nothing else to add to that. I don't know anyone else that has it so it is hard because no one gets it. I have two slamm children (3 and 1) So I have a verry hard time because I can't run after them and really be a great mom.

Priaries
06-11-2008, 11:09 PM
I just discovered this forum and am so excited about it, I was diagnosed with RSD in my left leg only 4 months ago. It progressed very quickly, I've already had several series of nerve blocks, then had a spinal infusion for two weeks. When things continued to get worse, they admitted me to the hospital and within a week I had a permenant spinal cord stimulator implanted. This has helped with a lot of the base burning pain, however it continues to progress, and I've recently started getting symptoms in my other leg. My doctors have told me they've done all they can for me, so I'm just stuck on a whole cocktail of medications, so I'm completely spaced out most of the time and have been starting to lose hope. Reading on the forum has brought a bit of that hope back, i don't feel quite as alienated and alone as I did... This all came on so quickly, I had no injury that triggered it, just woke up one day and it was there. I've had a pretty hard time adapting to "life with RSD." I was a full time student studying nursing and the proud mom of a very active 7 year old boy when this started. I've since had to drop out of school and my doctor's have told me I might want to start making alternate plans for my life because there is a good chance it may never go away, there's just no was to tell... It's great that there is a place like this, where we can share our stories and concerns. It's gotten so hard to relate to people in "real life" because it's so hard for them to understand where we are...

ali12
06-12-2008, 03:38 PM
Hello and welcome to the forum!!!

I am so sorry to hear that you too are dealing with RSD, I have had RSD for 15 months now. I suffer from RSD in my left leg and right arm and developed it after an ankle sprain when I was 12 years old - I am now 13.
If you have any questions please don't hesitate to ask - I will try and help you if I can.

I too am on a lot of medications, these include, Lyrica, Baclofen, Paracetamol, Tramadol, Ibuprofen and something to try and help me sleep. I have also tried Amitriptyline (this caused my vision to go blurry and resulted in a spread of the RSD to my arm), Kenadrin, Pregablin, Morphine, Diazepam, Propranolol, and many more but they dont help me that much either.

I am currently waiting to start an intense PT program and I will start that on the 7th July. The program lasts 3 weeks (possibly longer) and I will have 2 hours of PT in a morning, then tutoring, then dinner and another 2 hours of PT after dinner.

I really hope you are having a "good" day and if you need anything I am here for you. I know how scary it is when you are first diagnosed with something that you don't understand that well

I'm looking forward to chatting to you more
Alison
xxx

neicy
06-14-2008, 10:04 PM
Just diagnosed 6 months ago, not much support or experience for the medical community in the area where I live.

I was diagnosed with rsd three months ago. I have had no contact with others who suffer from this disease. I would like to know more about this disease and what I should do from here. :p

Priaries
06-16-2008, 01:17 PM
Hello and welcome to the forum!!!

I am so sorry to hear that you too are dealing with RSD, I have had RSD for 15 months now. I suffer from RSD in my left leg and right arm and developed it after an ankle sprain when I was 12 years old - I am now 13.
If you have any questions please don't hesitate to ask - I will try and help you if I can.

I too am on a lot of medications, these include, Lyrica, Baclofen, Paracetamol, Tramadol, Ibuprofen and something to try and help me sleep. I have also tried Amitriptyline (this caused my vision to go blurry and resulted in a spread of the RSD to my arm), Kenadrin, Pregablin, Morphine, Diazepam, Propranolol, and many more but they dont help me that much either.

I am currently waiting to start an intense PT program and I will start that on the 7th July. The program lasts 3 weeks (possibly longer) and I will have 2 hours of PT in a morning, then tutoring, then dinner and another 2 hours of PT after dinner.

I really hope you are having a "good" day and if you need anything I am here for you. I know how scary it is when you are first diagnosed with something that you don't understand that well

I'm looking forward to chatting to you more
Alison
xxx


Hi Alison, glad to meet you! Thanks for the response to my post, you are so young to be dealing with something as terrible as rsd, and I'm so sorry to hear you've had it for that long. I hope you have a great support team. I'm 26, with some wonderful family and friends trying to help me out and still having such a hard time dealing with it all, I can't begin to imagine how hard it must be for you; you're obviously a very strong young woman...

I'm also on the Lyrica, clonidine, amitriptyline, percocet, and valium; along with the fentanyl patch and the Catapres patch, so basically, I'm a walking (or riding) zombie, lol. They've got me in a wheelchair now...

Good luck with your PT program. That's one thing I've been a bit confused about, I was under the understanding that pt played a big role in the treatment of rsd; however, my team of doctors will not send me. I've been told that pushing too hard will only worsen the condition and perhaps cause further spread, so I'm supposed to try and move as much as possible at home, but not to push it. The last couple of weeks I've lost any flexibility in my left leg. My toes and foot are arched up as far as they can go and my leg is bent at the knee; I'm completely locked in to this position which makes sleep about impossible...

Anyhow, I guess just trying to get by day by day is all we can really do, I'm still holding out hope for a "miracle cure" but as i'm now only getting 2nd and 3rd opinions, that hope is fading fast... I hope you're having a "good day" as well and will count you in my prayers...

Take care my friend,
Sarah

julesw47
06-19-2008, 08:47 PM
I am new to the forum and share all of your agony. I had my left foot crushed 8 years ago and have had 6 surgeries to fusion my foot. They didn't catch the RSD in time and is now full blown. I take topomax, lexapro, klonapin,dilaudid. I have an intrathecal pump with dilaudid and bupravaine that I get an hourly dose. It is implanted in the left side of my abdomen. I walk with a cane from so much pain. I just had surgery in March because a screw broke and a part of my foot was broke again. Now because every invasion causes RSD to worsen the allodynia is really bad and so is the burning. I feel terrible for Sarah because the worse think for RSD is immobility. You are suppose to do some kind of exercise to help your extremity from contracture and burning. I wish everyone the best and god bless. Julie

Abbie
06-19-2008, 09:30 PM
Hello Jules!!!
I copied your post over to the New Member Introductions so that your post could be seen by more people and you could be welcome in Neurotalk fashion. Here is the link to the post I made in your honor.
http://neurotalk.psychcentral.com/showthread.php?p=305243#post305243 (http://neurotalk.psychcentral.com/showthread.php?p=305243#post305243)

I am new to the forum and share all of your agony. I had my left foot crushed 8 years ago and have had 6 surgeries to fusion my foot. They didn't catch the RSD in time and is now full blown. I take topomax, lexapro, klonapin,dilaudid. I have an intrathecal pump with dilaudid and bupravaine that I get an hourly dose. It is implanted in the left side of my abdomen. I walk with a cane from so much pain. I just had surgery in March because a screw broke and a part of my foot was broke again. Now because every invasion causes RSD to worsen the allodynia is really bad and so is the burning. I feel terrible for Sarah because the worse think for RSD is immobility. You are suppose to do some kind of exercise to help your extremity from contracture and burning. I wish everyone the best and god bless. Julie

pemac
06-22-2008, 04:22 PM
Hi
I am 27 yrs old and my RSD diagnosis was confirmed a few days ago after it showed up on a bone scan. It is in my left lateral knee. I have had 3 surgeries in that knee. My 3rd being in Jan this year and a major one. I was on bed rest for 8 weeks. I basically woke up about a month ago in pain so severe it made me cry. I am usually not a crier with pain unless it is really bad. I am on lyrica, oxycontin, a cream containing neruotin among other ingredients, and the lidoderm patch. I am suppose to get a nerve block soon. I am hoping once I get the block I can go off the meds and try to get pregnant. I am basically so sick of my knee and I really want to get pregnant. I guess my question is can RSD affect pregnancy and how long should you be off your meds before being able to try. I am kinda over the pain and just want to ignore it and move on with my life. I have been off work since Jan. My husband is a marine and we are getting ready to move from maryland to north carolina a week from today. The move so far has been hard because I cannot help with much and when I try I am in a lot of pain afterwards. I am hoping to find a good dr. there and to get the nerve block asap. Has anyone had the nerve block, if so how soon did you notice it helping?

I am glad I came across this site so I can find answers and do the best I can to get through this. I know I have good and bad days and ups and downs emotionally as well. I hope to learn a lot more. I think the more I know the better I can get through this. I know now it is not cureable but it can go in remission. I am hoping I can get mine to do that.


Erin

NikonKid
06-23-2008, 09:43 AM
I highly recommend the Carolina Pain Institute in Winston-Salem. I have been going there for the past 1 1/2 years. They are totally up to date on all the new treatments and research going on. If you google it you'll find their website. Not sure where in NC you're moving so hope this helps
Jeanne

Hi
I am 27 yrs old and my RSD diagnosis was confirmed a few days ago after it showed up on a bone scan. It is in my left lateral knee. I have had 3 surgeries in that knee. My 3rd being in Jan this year and a major one. I was on bed rest for 8 weeks. I basically woke up about a month ago in pain so severe it made me cry. I am usually not a crier with pain unless it is really bad. I am on lyrica, oxycontin, a cream containing neruotin among other ingredients, and the lidoderm patch. I am suppose to get a nerve block soon. I am hoping once I get the block I can go off the meds and try to get pregnant. I am basically so sick of my knee and I really want to get pregnant. I guess my question is can RSD affect pregnancy and how long should you be off your meds before being able to try. I am kinda over the pain and just want to ignore it and move on with my life. I have been off work since Jan. My husband is a marine and we are getting ready to move from maryland to north carolina a week from today. The move so far has been hard because I cannot help with much and when I try I am in a lot of pain afterwards. I am hoping to find a good dr. there and to get the nerve block asap. Has anyone had the nerve block, if so how soon did you notice it helping?

I am glad I came across this site so I can find answers and do the best I can to get through this. I know I have good and bad days and ups and downs emotionally as well. I hope to learn a lot more. I think the more I know the better I can get through this. I know now it is not cureable but it can go in remission. I am hoping I can get mine to do that.


Erin

pemac
06-25-2008, 07:06 AM
I highly recommend the Carolina Pain Institute in Winston-Salem. I have been going there for the past 1 1/2 years. They are totally up to date on all the new treatments and research going on. If you google it you'll find their website. Not sure where in NC you're moving so hope this helps
Jeanne

Thanks I will check it out. I will be moving to topsail island near camp leguene. But I will definitely look into it. I am ok if I have to drive a little bit to go to a descent dr.

snickers
06-26-2008, 09:37 PM
I don't know how else to describe how I feel other than frustrated. I have had shooting / buring pains off and on in my left wrist/hand for a few months now..I do a lot of computer work and thought that it was carpal tunnel. The last few weeks it has been worse so I was wearing a brace and trying to use it less then it began hurting so bad I couldn't function, I have a high pain tolerance and was just in tears it hurt so bad. So I scheduled a Dr. apt. a few hours before my apt my arm lower arm and hand got very cold and turned blue...this lasted for 4 hours then it warmed up for a few and went cold again...it does this constantly now. The Dr. tried somethings then sent me to ER to make sure it wasn't a bloodclot...6 hours and some tests later they said no clot probably RSD and sort of explained it to me...told me to follow up with my primary MD. I did that, they ran a bunch more tests bloodwork etc, still waiting for a few of the results but the Dr. said he really thinks this is what it is, that this is the only thing that accounts for everything...as I sit here my hand and wrist on fire I am in disbelieve...I didn't injure myself like I read about most...yet it swells and burns and freezes and just hurts like nuts. They currently just have me taking a lot of ibprofen and some vicoden for night when it's really bad...sometimes it works other times i scream and cry because i can't get it to stop no matter what i do...when it's really cold nothing can touch it without me yanking it away. Is there anyone else here who has this but never had an onset injury? I don't know if I accept this or get a 3rd opinion. I don't know if it will get worse, or better or spread or...I don't know.. sorry for ranting but I don't know what else to do...I'm hoping that I can find some answers, some help by learning more, talking with others. i have to stop now, it's going cold again.

Lisa I
07-06-2008, 03:44 PM
Hello all. Thank God I found this site. My husband of 24 years developed CRPS II (causalgia) after a total left hip replacement in 2006. Immediately after the surgery, while still in the recovery room, he was complaining of his left foot hurting and asking me to be careful walking near his foot (he was afraid I was going to bump into it). I was totally confused because he had surgery on his hip, not his foot, and he was still numb from the spinal. It was like his brain knew what his body didn't yet know. As soon as the spinal wore off he was in agony!!!! He was screaming for me to help him he was in so much pain IN HIS FOOT. I never imagined that after a hip replacement his pain would be in his foot. He couldn't move his foot and had a foot drop. At first we thought he couldn't move his foot because of the lack of mobility in the new hip. We were just clueless, scared and so confused. The day after his surgery, I was getting off the elevator on his floor and could hear him screaming all the way from elevator. I was terrified for him. He kept complaining of his foot burning.

They did minimal physical therapy on the hip, with him dragging his foot, and sent him home 4 days later. The surgeon came in one day and told my husband that he probably had a stretch injury to his nerve and that 90% of people recover. My husband said "what about the other 10%" and he said "they never recover." He basically blew us off and was like you'll be up and about in no time.

When I got him home I swear he suffered a mental breakdown from the pain. He started hallucinating I think from the combination of oxycodone, oxycotton, backlifen, and whatever else they had him on and the constant pain. He couldn't get comfortable. The bedsheet touching his heel and wrinkles in the sheet drove him crazy because it caused such intense pain. I couldn't put any bed covers over him because he couldn't stand the touch and a breeze coming in the window was terrible. I could only stand him up out of a hospital bed once a day to wash him and get him straight back in bed.

Finally we got him to a neurologist who sent him to a Pain Clinic. The doc told us he thought it was RSD/causalgia and did two sympathetic blocks on him but they offered him no relief. The doc said it couldn't be RSD because he didn't respond to the blocks. But when I took him back a year later he again referred to my husband's condition as causalgia. This doctor then recommended a spinal stimulator to help reduce his pain but my husband is so afraid of another doctor performing a surgery on him that he's not yet willing to do this. Every month he has to go to his primary care physician for a refill on his pain meds (recommended by the Pain Clinic) and they act like he's a drug addict. He takes oramorph, lyrica, vicodin, celexa daily. He has a lot of trouble sleeping at night. He continues to try and do things around the house but what used to take him a short time now takes him days. He said he has not been pain free in 2 years -- it's been completely constant. The burning is not so bad now but it is more dull, searing and stabbing pain. Before he was diagnosed they put him through an EMG which about put him through the ceiling and they documented they couldn't continue with the procedure but it showed that he does have nerve damage. I had to quit my 25 year job to cash in my pension because he had no disability and work elsewhere. It has just about ruined our lives. We no longer sleep together because of the pain he's in, the intimate part of our marriage is nearly gone. I feel so bad for my husband.

Interestingly enough, my daughter also had to have a lymph node removed this past week in her armpit and while in the hospital the lady in the next bed told us she also had causalgia and she recommended her neurosurgeon to my husband. She just had the spinal stimulator implanted. Can anyone tell me if they are effective? What is the recovery time for an implant?

babydoll
07-09-2008, 05:18 PM
I was diagnosed with C.R.P.S/R.S.D a little over a year ago. It happened after an injury to my right wrist ulna impaction and a arthoscopic surgery. Have had 6 nerve blocks in my neck (not fun) they have offered me lidocaine infusion?? I have said no thank you to that. I am on Novo Norotriptyn right now (think I'd know how to spell it by now! lol) have tried Gabapentin and Lyrica.
They say it doesn't spread but my body tells me otherwise. The pain specialist says the nerves can do that sort of thing about the random stabbing pains I have been having in my left side, and my feet.
When I wake up in the morning I can hardly move, my shoulders, neck and back are very stiff. I can only sit, drive walk, lay down for short amounts of time, otherwise I start hurting and aching more.This condition does make life feel like hell. With all this going on I am dealing with WCB & money problems due to all of this. Stress does not help this condition at all.
But knowing that others with this condition know what is going on, and can understand helps ALOT. Being alone with this condition, feeling like you are crazy, or going crazy, and that Drs act like you are exaggerating is frustrating. So hellooo, hope everyone is having a painfree day!

Franny
07-31-2008, 02:27 PM
Hi everyone. I was diagnosed with "it" 14 months ago but I am one of the fortunate ones . I started Nerve blocks right away and other than, burning, aching, stabbing pain and a little muscle waist, (oops it`s in my right arm from shoulder down,) I am still able to flip the "bird" to bad drivers! The pain does get pretty severe alot but looking at me, other than the goofy look I have on my face, you wouldn`t know I have it! I hide it pretty well but I can. I hope I made some of you laugh a little because this disease brings so much sadness to so many people! My love and support goes out to all of you and I hope if you want to talk I am here. I will need to talk to you guys too. It is just great to be able to "talk" to people who "know". Believe me I have had my times and have lots of fear but I try to keep some humor in life because some days it may be the ONLY thing that gets you through! I won1`t go into the long story of how I got it just now but I just wanted to say hi everyone. I hope sometimes I can make you smile.

Steph's Mother
08-07-2008, 02:23 PM
I'm new to this site and still trying to find my way around. I need to understand - you all are writing about "RSD". My daughter was diagnosed last year with "RND" Reflexive Neurovascular Distrophy. It sounds similar, yet different from RSD. She's is in terrible pain and having trouble not giving up. Have her in theraphy and on antidepressants, but we're incredibly worried. I need to connect with people dealing with what she is dealing with.

jenno
08-08-2008, 08:52 PM
RSD and RND are the same thing. I am guessing that your daughter received her diagnosis from Dr. Sherry, as that is what he calls it. My 17-year-old daughter was diagnosed 3-1/2 years ago, and I would be happy to share what we have learned along the way. You can send me a private message if you prefer to correspond that way. Wishing you and your daughter the very best!
Jeanne

Gymjunkie
08-14-2008, 11:02 AM
Dear All
I am newbie on this site and have now done a little bit of posting on the site.

I was diagnosed with CRPS Type 1 in January 2008 year after a complete achilles rupture & repair surgery done last August/September. I have most of the typical symptoms that you are all familiar with. I have the "cold" type of CRPS where my affected leg is cold and mostly I have a deep, cold, aching somatic form of neuropathic pain rather than the burning pain that many folk have. I am starting to get burning pain and hot sensations more of the time these days - I've no idea whether it is my pain changing or not. I have to use crutches all of the time with the exception of sometimes in the house.

My leg was immobilised for 10 weeks after the surgery - in a series of casts and then a walking boot. Looking back I now realise that the kind of pain I had and the discolouration when I stood up were not normal. I didn't know any different having never had an injury like this one or any invasive surgery. I couldn't understand why the painkillers weren't working and why the pain was so bad weeks and weeks after the surgery - everyone just kept telling me "its a really painful injury".

I started my physio in mid-november and had no movement at all below my knee. I could barely wiggle four of my toes. I struggled to make any progress week after week and the pain was terrible. I couldn't make the transition from the boot into shoes nor could I get rid of the crutches. There were times the pain was so bad that I was physically sick. This went on until January and eventually after much backwards and forwards between the physio, the orthopaedic surgeon, my GP and the pain nurse, I saw a pain specialist and CRPS Type 1 was diagnosed at the end of January. I had a lumbar sympathetic block in February which wasn't terribly helpful so it was decided not to do any more. I have tried various meds and have settled on a set that make a reasonable difference to the pain and to the temperature and colour of my leg. Its bearable most of the time is the best I can say.

I started to get spasms and tremors in my affected leg in mid-March which spread over about 2 months to my whole body. The movement problems have continued to get worse - affecting more and more of my body, becoming more intense and more frequent. I have constant muscle spasms everywhere, sudden jerking, tremors, spastic posturing, weakness, dystonia, scissoring, slow twisting of my limbs and body plus I have stretch reflexes. I have mostly got flexor spasming but I get extensor spasms when I lie down. I find it virtually impossible to walk even with crutches because I can't make my legs move - they are rigid and I can only slowly drag them along with huge effort. I experience periods of paralysis where I can't move or stand up although I can feel my legs. I often can't make voluntary movements but my body is constantly moving in an involuntary way. Cold makes my muscles rigid and any touch on my legs (especially unexpected) makes them jerk and spasm uncontrollably. It is also worse if I am upset, worried or nervous. It continues to get worse virtually by the week.

I am going through various neurological tests to see if there can be another neurological explanation but I have been told by a couple of docs that CRPS can't cause such widespread movement disorders beyond the affected limb. My reading of the medical literature would suggest otherwise - I can accept that it might be very rare but it does seem possible.

I guess I have been lucky that as a bit of a gym junkie, I kept going through the whole time my leg was in plaster. After that I started swimming when the physio and ortho told me it was OK. It was absolute agony (which they couldn't understand until I got the CRPS diagnosis). I think they thought I was just feeble! I tried to walk and do the achilles rehab exercises in spite of the fact that I was in absolute agony and couldn't seem to progress. I think that sticking at these things because I was utterly terrified that people would think I wasn't trying hard enough probably prevented me getting a lot of the problems that are caused by not using a CRPS affected limb. I also kept working at getting a shoe and sock on so that probably helped to prevent the extreme hypersensitivity and allodynia reaching such a level that I couldn't bear anything to touch my skin.

I have kept up going to the gym all the way through even when I suffered from the inevitable bout of depression that followed the "high" of getting my diagnosis. It has helped pull me through in so many ways and I go 5 - 9 times a week. I swim (totally unable to use my legs since they are completely paralysed when I get in the water), sit on the bike (no resistance and very slow or the spasms become impossible) and do upper body weights. It keeps me sane(ish).

I have ordered a proper and very snazzy "active user" wheelchair and it should be arriving next week. Unlike some others here, I am really excited about taking the step of becoming a wheelchair user. It will give me a level of freedom and mobility that I've not had for a year. I have been utterly dependant on others and I need to reclaim some life. I have no prospect of any rehab or improvement while I have the movement problems so its a case of either embrace the assistive devices or go nowhere.

That's my story so far.

Rita
08-15-2008, 09:35 PM
Hi everyone.. I've just registered, at the request of my fiance', who was diagnosed with RSD last month following a crush injury to his left foot and ankle at work. His injury happened just over 2 months ago, and the RSD has already spread to his knee. He is experiencing tremors and "dancing legs" and has severe swelling and discoloration. Of course, he's dealing with constant pain, and taking 2 different meds at this time, without much relief.
We've seen the pain specialist once, and he has an appt. for a sympathetic lumbar block next month. The doctor says if it doesn't help, they will get "more aggressive". I'm really worried about this, and not sure how much more aggressive it can get! I've read that alot of people don't really get relief from the blocks, so I'm hoping it isn't in vain.
We had never even heard of RSD until he was diagnosed. We are both in desperate need of answers, and hope. We are both really glad to have found this forum, and others going through the same things.

loretta
08-31-2008, 03:08 AM
Hi everyone. I was diagnosed with "it" 14 months ago but I am one of the fortunate ones . I started Nerve blocks right away and other than, burning, aching, stabbing pain and a little muscle waist, (oops it`s in my right arm from shoulder down,) I am still able to flip the "bird" to bad drivers! The pain does get pretty severe alot but looking at me, other than the goofy look I have on my face, you wouldn`t know I have it! I hide it pretty well but I can. I hope I made some of you laugh a little because this disease brings so much sadness to so many people! My love and support goes out to all of you and I hope if you want to talk I am here. I will need to talk to you guys too. It is just great to be able to "talk" to people who "know". Believe me I have had my times and have lots of fear but I try to keep some humor in life because some days it may be the ONLY thing that gets you through! I won1`t go into the long story of how I got it just now but I just wanted to say hi everyone. I hope sometimes I can make you smile.

Hi Franny and Welcome. My name is Loretta and I have had this 12 years following surgery. A sense of humor and gratitude is sooooo important to help us get thru this. The pain surely gives us enough negativity. I have both the burning and discoloration and also the cold clamly sweating. I used to have the daily shooting pain, spasms, uncontrolable jerking until I found the right Dr. and balanced my body with meds, anti-seizure med. It makes you tired and gain weight, but I was in constant jerking and electric jolts going thru my body and brain while sleeping and lifting my head off the pillow. I had to go up to 3200 mg of Neurotin for them to quit, and now I switched to the new drug Lyrica. It helps more with the pain. anti-depressants also work well with nerve pain. I also take an anti-anxiety med, because stress increases the symptons so much.I personally would rather take these meds and keep the opiates miminized. I take Vicodin. Hope we can be there for you too. In the city where I live, there is a monthly support meeting. You can go on line to national rsd orginization and put in your zip code and they can give you the closes one and a phone number to call. They have interesting speakers and talking to others who really understand is such a good thing. Hope today is a good day for you. Loretta

loretta
08-31-2008, 03:48 AM
Hi Rita and Welcome, My name is Loretta and I have full body rsd. 12 years ago I had surgery and the next day my arm was swollen and then shoulder froze up and need lots of physcial Therapy. I was misdiagnosed and didn't really get diagnosed for 5-6 years. It only took the orthopedic surgeon less than a minute to diagnose rsd and confirm that with tests. You are in the very best situation to go into remission. The blocks work best if they are given with the first 6 months or even up to a year. I'm not a Dr. but this is common knowledge with this disorder. Sometimes it takes several blocks. An anetheologist usually gives the blocks. I would want the Dr. to have a lot of experience in this area. And Don't be in a hurry to let work comp. pressure you to sign off. This is a disorder that has no cure and best hope is to go in remission. I went in remission and then it came back with just a pull of a nerve in my hand while water skiing. It was after that, that I got a correct diagnosis. It spread from there to other hand and then both feet and legs, full body.I'm so sorry your fiance had this happen to him. My husband and married daughter have been so wonderful. I am going to soon apply for social security disability. I've waited as long as I can, this has totally disabled me from working in our business. My Dr. is supportive. My daughter is a court reporter so she gave me a name of an attorney that is good. It takes a long time to really see the consequences of the damage to your body. It's really more than that. Constant pain and the meds take their toll emotionally. So welcome to this forum- it's full of loving, compassionate women and men who have so much experience with this incredible disorder, there are a lot of Drs. that don't know much about rsd or have even heard of it. I have learned the most from this forum and my Dr.:) If your Dr. isn't experienced in the blocks, it's worth doing research and asking questions about their knowledge and experience. Hope all goes well with the block. Loretta

janesvett
08-31-2008, 09:25 PM
Hello everyone!

New to the group, here's my story, quick and short.

I have RSD in the right (diagnosed in 7/06) & left (diagnosed in 11/06)
(wrist arm and hand) on both sides. I believe I hit stage 3 when it
spread to the left side. CRPS1 due a strian so they think. I was at
work and they believe it is due to a repetative motion injuy from
typing (an unbelieveable amount) or possibly from lifting heavy boxes
during this time.

Hi

i am new to the site, but have been researching this new disease that i have since 11/07, and i had never heard of it.
i had a car accident, (was rear-ended) and the whiplash triggered the onset of symptoms from my degenerative disk disease...worse on the right side. my neck pain was always worse on the right, and so i had agreed to go through with steroid injections (ugh )...the second one damaged my spinal cord. since january i have had pain in my joints so bad i look like an old woman when i first get up from bed...the skin on my right hand looked like it was rotting, and was so dry my hand would bleed in several places. wounds take FOREVER to heal, and the pain i feel is excruciating, especially in places where i am hypersensitive (the inside of my right upper arm, it hurts so bad to be touched i see stars). i am trying to find some way to deal with it other than all the meds i am on, which have me feeling loopy and sleepy half the time. i had 2 stellate blocks, and am seeing a doc in a university hospital...maybe a spinal stimulator??
thanks to all, it is great reading your stories. when i tell people here what is wrong with me, they just stare at me (never heard of it)
my surgeon (have had many other issues along with the nerve stuff!) has told me that i am a walking symptom for RSD, he says it is very difficult to diagnose. great, right? !

loretta
09-03-2008, 02:22 AM
[QUOTE=janesvett;358899]Hi

i am new to the site, but have been researching this new disease that i have since 11/07, and i had never heard of it.
i had a car accident, (was rear-ended) and the whiplash triggered the onset of symptoms from my degenerative disk disease...worse on the right side. my neck pain was always worse on the right, and so i had agreed to go through with steroid injections (ugh )...the second one damaged my spinal cord. since january i have had pain in my joints so bad i look like an old woman when i first get up from bed...the skin on my right hand looked like it was rotting, and was so dry my hand would bleed in several places. wounds take FOREVER to heal, and the pain i feel is excruciating, especially in places where i am hypersensitive (the inside of my right upper arm, it hurts so bad to be touched i see stars). i am trying to find some way to deal with it other than all the meds i am on, which have me feeling loopy and sleepy half the time. i had 2 stellate blocks, and am seeing a doc in a university hospital...maybe a spinal stimulator??
thanks to all, it is great reading your stories. when i tell people here what is wrong with me, they just stare at me (never heard of it)
my surgeon (have had many other issues along with the nerve stuff!) has told me that i am a walking symptom for RSD, he says it is very difficult to diagnose. great, right? !

Hi Janesvett, and welcome. so sorry you have rsd. Did the blocks help at all. That being done within 6-12 months is the best shot at remission. I was way to long getting diagnosed- like years. I have it full body now. Please don't tell us you have settled with the other cars' insurance company. This is a very long term expensive disorder.(my daughter is in the legal field.) What meds are you on? I'm very low energy from the meds and have gained a lot of weight. partly from the meds and partly because I can't play tennis every day and water ski and snow ski and aerobics and running and biking. Needless to say I had always been very active. Swimming when I can. I had never heard of RSD either. Actually was misdiagnosed and always sorry I didn't go after the Doc. My mother was misdiagnosed and died at 46, cancer. We sued and won a large settlement, not a easy thing to do. You can't always get justice in the court system, but sometimes. Some Drs. don't like to treat RSD patients, especially if they think a lawsuit is in the
wind. Hope you can get some pain relief. I haven't had a scs, had heard good and bad about them. I sure would check it out and the doc doing the procedure. Again welcome, Loretta

AnnieLee
09-12-2008, 08:40 AM
Hi all, I've joined this forum because I am both a patient with RSD and neuralgia, as well as a professional who sees children who often have neurological issues (not RSD). Actually, the professional interest was what brought me to NeuroTalk initially, but I was delighted to see you also had support for me...

I have had RSD for about five years now. It started with nerve damage down my right leg due to a spinal issue (trapped nerve in my spine had to be stripped some during surgery when the surgeons tried to removed the bits and pieces of a mangled disc, and the nerve swelled etc--I wasn't moving for some weeks at that time and surgery was the only option left). I think they docs knew I'd have some nerve damage, but the hope was that I'd get more movement and at least be able to do a little better. Well, the surgery was a success on that end--I needed a lot of rehab, about a year, I think, going from barely weight bearing to a walker to crutches to one crutch to a cane (still using a cane some of the time), but I am walking again, and I can sit, and I can put on my own clothing (always nice to be able to pull on one's own underwear...after heathaides, friends, family, and pretty much just about anyone had to do that for me for a time...goodbye modesty...).
I have nerve damage going all down my right leg, with loss of sensation, loss of strenth, reduced range of movement (the nerve is trapped in the scar tissue from the surgery but they cannot go in to release it out of fear of making more scar tissue and because I had a reaction to the anesthesia which makes additional surgeries a problem unless they are for life-saving reasons only), etc. I also have neuralgia in that leg and less neuralgia in the 'good' leg (from pressure of the spine on other nerves where the other discs in my lumbar spine are messed up, but at least allowing me some functioning--and anyway, another surgery isn't an option now due to the anesthesia issue). I've developed RSD in my right foot pretty much after the surgery, but it took a while to realize what it was becasue of all the nerve swelling and other stuff.
I've been fortunate that my RSD isn't spreading much--it is pretty much relegated to my legs, worst at my right foot and affects both calves. It is not too bad on the bottom of the foot, thank goodness, so I can put weight on my leg, but it is very bad on the top of the foot and the ankle area. It got somewhat worse after I sprained my right ankle (the nerve gets pulled when I walk and then my leg falls asleep--how it can both hurt and fall asleep I am still wondering, but it is true, it does happen--and then I step on it funny) and tore ligaments in it which cannot really heal well and haven't fully healed a year and a half later.
I have a hard time tolerating ANYTHING touching my foot, but life being what it is, I have to (I'm sure you know the drill....). I found some socks (100% cotton, thick, no seams, cushy, extra softener in washing) that I can tolerate with the least pain, and shoes that open wide in the front and close with velcro but securely enough that they don't rub-around as I walk. I don't look like anything's wrong (sans cane, when I need it). I'm sure you know the drill of that, too.

I'm taking some medications to help with the results of the anesthesia affecting my autonomic nervous system (makes me lose conciousness without warning, basically, and affected my heart--something they couldn't have known beforehan, it wasn't really a malpractice or anything), and that condition also affects my choices as far as RSD treatment goes: I cannot get any of the injections or nerve blocks because they can aggravate the condition I have and throw it off balance again. It is not only that losing conciousness in the middle of the street is a little risky and that I have been to more ERs that one usually would see in a lifetime, but also every time I fall like that I mess up my already messed up spine more...and risk more RSD...so it is important to keep the relative status quo (read: me staying concious) that my cardiologist labored to achieve.
I took Mobic for about 3 years, but then got a recurrent gastric ulcer and had to stop that.
I was also on Neurontin for about 4 years but we recently tried to taper it down and realized it was no longer doing anything much (other than controlling some of the more annoying--vs. painful--neuralgia symptoms) so it wasn't worth it to keep taking it.
I'm taking Tramadol (helps a bit with the calf and back and hip pain)
And Morphine (does nothing for the RSD but helps with the calf-back-hip pain and therefore reduces my overall pain a bit to make it overall more manageable).

I don't know anything that actually helps the RSD directly, other than continuing to use my leg as much as I can, not letting myself develop too much avoidance around it (you know--not to keep it away from the water in the tub or from the sheets at night or socks and shoes etc or even the sand on the beach--though I will not do THAT again!!!). And learning to live with the pain and relegate it to some corner in my being so I can go on with my life the best I can.

It always helps to get support and hear from other people who have RSD, because it is a rather lonely disease, in the sense that one might not LOOK like one is in pain or anything is wrong, and therefore it is hard for people to relate to the fact that I am in constant pain (not that I need them to relate to it, but it does help if they understand it...).

Thats it. I probably wrote more than any of you ever wanted to know...
Looking forward to chatting with yas,
Annie

loretta
09-15-2008, 05:00 AM
Dear All
I am newbie on this site and have now done a little bit of posting on the site.

I was diagnosed with CRPS Type 1 in January 2008 year after a complete achilles rupture & repair surgery done last August/September. I have most of the typical symptoms that you are all familiar with. I have the "cold" type of CRPS where my affected leg is cold and mostly I have a deep, cold, aching somatic form of neuropathic pain rather than the burning pain that many folk have. I am starting to get burning pain and hot sensations more of the time these days - I've no idea whether it is my pain changing or not. I have to use crutches all of the time with the exception of sometimes in the house.

My leg was immobilised for 10 weeks after the surgery - in a series of casts and then a walking boot. Looking back I now realise that the kind of pain I had and the discolouration when I stood up were not normal. I didn't know any different having never had an injury like this one or any invasive surgery. I couldn't understand why the painkillers weren't working and why the pain was so bad weeks and weeks after the surgery - everyone just kept telling me "its a really painful injury".

I started my physio in mid-november and had no movement at all below my knee. I could barely wiggle four of my toes. I struggled to make any progress week after week and the pain was terrible. I couldn't make the transition from the boot into shoes nor could I get rid of the crutches. There were times the pain was so bad that I was physically sick. This went on until January and eventually after much backwards and forwards between the physio, the orthopaedic surgeon, my GP and the pain nurse, I saw a pain specialist and CRPS Type 1 was diagnosed at the end of January. I had a lumbar sympathetic block in February which wasn't terribly helpful so it was decided not to do any more. I have tried various meds and have settled on a set that make a reasonable difference to the pain and to the temperature and colour of my leg. Its bearable most of the time is the best I can say.

I started to get spasms and tremors in my affected leg in mid-March which spread over about 2 months to my whole body. The movement problems have continued to get worse - affecting more and more of my body, becoming more intense and more frequent. I have constant muscle spasms everywhere, sudden jerking, tremors, spastic posturing, weakness, dystonia, scissoring, slow twisting of my limbs and body plus I have stretch reflexes. I have mostly got flexor spasming but I get extensor spasms when I lie down. I find it virtually impossible to walk even with crutches because I can't make my legs move - they are rigid and I can only slowly drag them along with huge effort. I experience periods of paralysis where I can't move or stand up although I can feel my legs. I often can't make voluntary movements but my body is constantly moving in an involuntary way. Cold makes my muscles rigid and any touch on my legs (especially unexpected) makes them jerk and spasm uncontrollably. It is also worse if I am upset, worried or nervous. It continues to get worse virtually by the week.

I am going through various neurological tests to see if there can be another neurological explanation but I have been told by a couple of docs that CRPS can't cause such widespread movement disorders beyond the affected limb. My reading of the medical literature would suggest otherwise - I can accept that it might be very rare but it does seem possible.

I guess I have been lucky that as a bit of a gym junkie, I kept going through the whole time my leg was in plaster. After that I started swimming when the physio and ortho told me it was OK. It was absolute agony (which they couldn't understand until I got the CRPS diagnosis). I think they thought I was just feeble! I tried to walk and do the achilles rehab exercises in spite of the fact that I was in absolute agony and couldn't seem to progress. I think that sticking at these things because I was utterly terrified that people would think I wasn't trying hard enough probably prevented me getting a lot of the problems that are caused by not using a CRPS affected limb. I also kept working at getting a shoe and sock on so that probably helped to prevent the extreme hypersensitivity and allodynia reaching such a level that I couldn't bear anything to touch my skin.

I have kept up going to the gym all the way through even when I suffered from the inevitable bout of depression that followed the "high" of getting my diagnosis. It has helped pull me through in so many ways and I go 5 - 9 times a week. I swim (totally unable to use my legs since they are completely paralysed when I get in the water), sit on the bike (no resistance and very slow or the spasms become impossible) and do upper body weights. It keeps me sane(ish).

I have ordered a proper and very snazzy "active user" wheelchair and it should be arriving next week. Unlike some others here, I am really excited about taking the step of becoming a wheelchair user. It will give me a level of freedom and mobility that I've not had for a year. I have been utterly dependant on others and I need to reclaim some life. I have no prospect of any rehab or improvement while I have the movement problems so its a case of either embrace the assistive devices or go nowhere.

That's my story so far.

Hi Gymjunkie and Welcome to our group of compassionate and caring people.
I'm so sorry you have this RSD. I had not even heard of it 12 years ago. I had breast surgery-two benign tumors- I woke up next day with swollen arm. then my shoulder froze up. My Dr. sent me to Rehap Specialist. I had 100 treatments to get the use of my shoulder/arm back. Also had an hour of massage, that I paid for before the torture hour. Shortly after, the other shoulder froze up and again therapy. Then the left hand froze up while water skiing, no use of fingers at all. Was told I had rheumatoid arthritis. Flew from Arizona back to Oregon to a sports injury group. The Hand Dr. said RSD in 30 seconds. More therapy and desensitizing. It's amazing how many Drs. that have never heard of RSD. I, like yourself ,was very active, Tennis, Swimming 3 times a week, club work out, snow skiing, 10 K 1/2 marathon, horseback, That part of my life has been shattered.Now full body, and yes I have spasms, jerks, electric jolts from sound sleep to jerking my head right off the pillow. It's the meds that put that under control. My Dr. is a Psychiatrist,Neurologist, and degree in Pharmacology.It was the neurotin that controled the spasms and now switched to to Lyrica. For me, the Lyrica worked better on the pain. They are both anti-seizure meds. Both cause weight gain. I have always read and heard on this forum, the best chance of remission are the blocks before the first year anniversary. I didn't have any, because of being misdiagnosed for so many years. The anti-depressants do work on nerve pain. Because RSD is an autonomic disorder, it affects circulation, and blood pressure high and low. I've had some heart involvement. Recently someone wrote about a ketamine combination compounding cream to rub on the burning feet. My Dr. asked me this week, to fax him the information. I'm going to try it. I also have the cold, deep bone pain. I stretch and exercise every day. Swimming toe exercises actually changed my curling toes to go back in the right position. My arms are twisting now. Working hard to get the weight gained back off. Do you have trouble sleeping? Most of us do. It's miserable not being able to get to sleep, even with ambien cr. I think the anti-anxiety pill helps keep me calmer. It's hard with 24/7 nerve pain. I get very bad headaches. Also have trigeminal nerve pain on my left temple. Do you get skin rashes or red dots??
I'm so sorry again about your paralysis, you sound very strong and determined to make the best of your situation, but not giving up. I'm wondering too, if you have something in addition causing the paralysis? I know a lot of us end up in a wheelchair with whole body RSD or lower body. Anyway, I wish the best for you. I'm married-40 years , my hubby does a lot around the house, Our daughter is married 8 years, and moved to Chicago a year ago. She comes every two weeks and works 2-3 days and helps with the house. We live in Arizona. I think Oregon, where we moved from, would be difficult with the cold and rain. Take care, Loretta

dennyfan
09-16-2008, 04:43 PM
Hi! I am new to your board. It was recommended to me by a friend. I was diagnosed with RSD about 1 1/2 years ago after a year of misdiagnosis. But the doctors think I have had RSD in mild form for 18 years since I crushed my hand in an industrial accident. But a simple carpal tunnel surgery & ligament repair surgery in April of 2006 started what has been a very hard two & 1/2 years. I am now completely disabled. I had a very active full time job with one of the top delivery companies as a courier and now am home. I miss my job terribly. My son who I am very close to also left for college last year which was so hard. I had a SCS implanted a few monthes ago. It helps but has not been the answer I had hoped for.I tried blocks but they brought no help & horrible side effects. I live in a rural area so there werent a great deal of options open to me here even though I have a great general practitonier who diganosed me first. And the pain specialist I have now is a good doctor. My husband & I were married for nineteen years but had to get divorced to protect him & our home from my medical bills. We are still together but just not married on paper anymore. Getting divorced was one of the hardest things I have ever done. But it was neccessary. For my birthday he gave me an engagment ring & got down on one knee & everything & asked me to marry him again. SO I didnt have to say we were divorced anymore but engaged even if its a "very" long engagement. I can't wait to get to know everyone. Hope you are having a good week of low pain days.
Denny

loretta
09-17-2008, 06:14 AM
Hi! I am new to your board. It was recommended to me by a friend. I was diagnosed with RSD about 1 1/2 years ago after a year of misdiagnosis. But the doctors think I have had RSD in mild form for 18 years since I crushed my hand in an industrial accident. But a simple carpal tunnel surgery & ligament repair surgery in April of 2006 started what has been a very hard two & 1/2 years. I am now completely disabled. I had a very active full time job with one of the top delivery companies as a courier and now am home. I miss my job terribly. My son who I am very close to also left for college last year which was so hard. I had a SCS implanted a few monthes ago. It helps but has not been the answer I had hoped for.I tried blocks but they brought no help & horrible side effects. I live in a rural area so there werent a great deal of options open to me here even though I have a great general practitonier who diganosed me first. And the pain specialist I have now is a good doctor. My husband & I were married for nineteen years but had to get divorced to protect him & our home from my medical bills. We are still together but just not married on paper anymore. Getting divorced was one of the hardest things I have ever done. But it was neccessary. For my birthday he gave me an engagment ring & got down on one knee & everything & asked me to marry him again. SO I didnt have to say we were divorced anymore but engaged even if its a "very" long engagement. I can't wait to get to know everyone. Hope you are having a good week of low pain days.
Denny

Hi Denny and Hubby, and welcome even though it's a RSD family. I have found so much good education and coping skills here. Compassion from everyone- we are all in the same boat. I can understand why it's difficult for family and friends to really know what we go thru. Boy do I understand our children moving away. Our daughter and son in law moved away 1 year ago today. From Phoenix, to Chicago. We miss them so much. I've been up once, but my husband hasn't been up yet. Our daughter keept her job here, an independent court reporter whose firm let's her maker her own schedule. So she flys home every other week. Stays 4-8 days. Her husband comes when he has 3 or 4 days off. That's been so wonderful. They both help me with the house as does my husband. Do you care to share any more details on your scs- what you like and your disappointments? That's interesting about the 18 year diagnoses- Mine was was diagnosed about 5 years later. now total of 12 years and full body. I'm have terrible time sleeping at night from pain and headaches, have trigeminal nerve pain in left temple and now I'm sure the rsd is in my left eye. Incredible pain. I'll call my Dr. tomorrow.Do you live in warm
climate or cold? /what school is you son going to? Does he know yet what he wants to major in? That sweet your hubby was so sensitive. Wow a new engagement ring Last week I tried to get disability but was turned down as We have had our own business for 40 years and I lack 10 credits. We have asked our accountant if we can fix that and qualify. I'm on a group policy with our company. Otherwise , wouldn't qualify.Do you have the one son or more children, we just have our daughter.

I am really sorry you can't work now, and you loved it so much. I did too.
We have a coffee business. We have drivers and trucks and deliver to businesses and car dealerships, all kinds of business where they want to provide for employees and customers. I used to meet with new clients and show them catalogs of equipment to choose from and different coffee samples.I liked meeting with people, everyone loves coffee. We provide Starbucks, seattle's best, all kinds and also vending machines that provide one cup at a time bean coffee and mochas, latte's etc. With the economy, even business's are cutting back. Hope the best and glad you like your Drs.
that can be a challenge. I like mine too, see him once a month. Take care,:)
Loretta

dennyfan
09-20-2008, 01:51 PM
Loretta, Its so nice to meet you. Thank you for making me feel so welcome. I only have the one son. He is a driven young man. He goes to Oregon State University. He just changed his major from mechanical engineering to political science with a minor in engineering. He is an Air Force ROTC Cadet. He wants to spend his life in the Air Force serving his country with a goal of being a general one day. You are lucky to still see your children so often. Even though my son is only 2 1/2 -3 hours away I go monthes without seeing him. He has a great deal of commitments because of ROTC. But I am very proud. If not a little scared. I like my SCS & it helps my pain level on a day to day basis. It doesnt help a lot during a flare. It however did not help as much as I though it would & did not give me my life back like I though it would either. I thought it would cut my pain by 50% or so & I could go back to work.Not in my pevious job (it was a high energy & physically demanding job) but I thought I could get a college education & become a teacher. But my pain level on a good day was only cut by about 20%. More than anything it takes the edge off and helps me keep my sanity. I have beeen in a bad flare for 3 week or more and am jst now coming off it. The SCS barely helped but at the same time I didnt want to turn it off to take a shower or drive anywhere. I am so sorry you are in so much pain & I hope your doctors can help. I have heard RSD in the eyes is awful. I have friends who have it full body & that scares me to death. I just went to my pain doc yesterday & I am not very happy with him right now. It is the first time that I have felt no convidence in him & that he has given up in helping me. I think I am taking his control over my pain meds away from him and giving them back to my general practioner doc. I am closer to him & feel like he takes better care of me. I live in the high desert of centeral Oregon. SO I have both warm & cold climate. We have a distinct 4 seasons. I am not looking forward to winter. It is my worst time. The snow and ice & cold are not my friend. I dont know if I missed anything else you wanted to know. If I did just ask me again. I am sorry. It was really nice to meet you. Please let me know what your doctor said. And take care.
hugs,
Denny

loretta
09-21-2008, 03:50 AM
Hi Denny, Thanks for writing back. There are many Drs. that really don't like to be involved with RSD patients. Sounds like your G.P. Dr. is compassionate. My father was in the Air Force here in AZ. That's where he met my mother. He was a pilot. My son-in-law just finished his first year as a commercial pilot. That's why they moved to Chicago. Yes, we are so happy they come 'home' so often. Our daughter and myself were born in Eugene, not far from Corvallis as you know. We loved to ski at Mt. Bachelor and for about 17 years we spent 10 days at the Cove, Lake Billy Chinook. water skiing and my husband loved to fish. There were about 4-5 families that went every year. I love Bend, Sisters, and Sun River. I know what you mean about the cold not being our friend. If you swim, it's important the water is at least 86 degrees. In the winter, I use heating pad and bean bag in the micro. I have called my Dr. yet since he changed a couple meds.Loretta

ali12
09-27-2008, 09:44 AM
Hi everyone, This is my very long RSD Story - I need to update it but thought I would post it. I am thinking about putting my story into a book to try and help raise awareness about RSD.

My RSD Journey.

It’s hard to believe that just over a year ago I was a normal 12 year old: I went to school, had good grades, went shopping, had fun and did all of the usual things that a normal 12 year old would do.

Then on the 20th March 2007 all of this changed when I fell down some steps outside my moms work and sprained my left ankle. My ankle was painful but both me and my mom thought that it was just a normal ankle sprain and that it would be better within a few days – we couldn’t have been more wrong!!

Over the next few days instead of getting better my ankle gradually got worse and the slightest touch had me crying in pain. Knowing that something wasn’t quite right, my mom took me to ER, where they X-Rayed my ankle, told me that I hadn’t fractured any bones and that I should rest, elevate and ice my ankle over the next few days.

I didn’t think things could get any worse but they did, so my mom took me back to ER for a second opinion. Once again we were told that there was nothing to worry about, but that I may benefit from some Physical Therapy. This visit was to be my first of many experiences of the lack of belief and mistrust, some health professionals have in RSD patients.

Not only was I told that I needed some Physical Therapy, but that I should get my act together, stop dwelling on the pain and if I did that my ankle would get better.

By the time I had my Physical Therapy assessment the following week, my foot had begun to rotate out from the ankle and the slightest touch to the area round the ankle bone caused me excruciating pain. I was told that I had probably torn a ligament, given crutches to help me to bear less weight through the ankle until the tear had fully healed.

The following week I went on vacation with my parents to Spain and managed to increase my walking distance although the pain never went away. Unfortunately on the last night someone knocked into my ankle and I spent the rest of the night crying and in agony.

Over the next month I had twice weekly Physical Therapy but despite this the rotation in my ankle became fixed, the area of pain increased and walking became more difficult.

Eventually it was decided that something had to be done to stop the rotation so the PT's contacted ER to ask them to arrange for my leg to be placed into a cast to try and correct the rotation.

Even though the cast was supposed to remain in place for 2 weeks I had to have it removed after 4 days, my ankle and my foot were trying to rotate within the cast and I was unable to do anything because of the pain.

Until this time I had somehow being able to go to school in between hospital appointments but over the next few weeks I often had to come home due to the pain or couldn’t make it to school in the first place.

As the cast had being unsuccessful an MRI scan was ordered but I was told that I may have to wait 3 months for this to be done, so I was referred back to Physical Therapy. It was this time that the PT's first mentioned that I may be at risk of developing RSD. From what I understand now there is no such thing as being at risk of developing RSD and that I actually already had it and already had done from the very point in time when the injury had occurred.

I had regular Hydrotherapy sessions without success and despite the junior Physical Therapist still questioning RSD she was over ruled by her senior who believed that I was making up the whole thing because I was having problems either at home or at school.

The very last Hydrotherapy session I had consisted of 2 PT's cornering me in the pool and proceeding to attempt to prove that I was making the whole thing up and asking me to admit that I was lying about the whole thing.

Knowing that the MRI scan was still weeks away my mom asked for a second opinion and we were referred to one of the Orthopaedic Doctors.

At first he too believed that there was some psychological reason as to why all of this was happening. Fortunately a couple of nights previously my mom had noticed a slight spasm in the muscles in my lower leg so she asked the doctor to check it out.

It was almost as though a light had gone on, he suddenly realised there was something physically wrong and mentioned that there may be some nerve damage. As he had never seen this before he needed his boss to check it out.

The following week we were back again to see his boss, who despite telling him that the spasms, pain and deformity were in my ankle, he examined my hip instead almost dislocating it in the process, suggested placing me on a waiting list to have a full leg cast put on for around 6 weeks and also suggested that I may benefit from seeing a Pain Management Doctor. Whilst I was on the waiting list it was also suggested that I see my own GP whole would prescribe me some pain medications.

My GP took one look at my foot, picked up the phone, spoke to the Orthopaedic team and demanded that they saw me the same day and began running some tests to find out what he was actually prescribing the medications for.

An hour later I was back in ER and tests were being run. The doctor there couldn’t believe I had not being admitted previously and immediately sought to secure me a bed.

Unfortunately for me, he also asked the duty Physical Therapist to take a look at my foot. Once again I was told there was no reason why I needed an admission and that PT was the best way forward in my case.

I felt at the time that I was a hamster on a wheel, going round in circles but never getting anywhere. Despite the best efforts of the doctors, the PT's were once again calling the shots!!

By now I had been in pain for 3 and a half months, my walking was slow, my ankle was permanently rotated and I hadn’t been able to attend school for a number of weeks.

My mom called the pain team at our local children’s hospital but was told that it may be another 3 months before they could see me.

On June 30th I went to visit my grandma. The effort of walking the 20 metres to her house left me physically and emotionally shattered so instead of going home my mom drove me to the ER nearest her house.

The doctor’s took one look at me and ordered X-Rays. When they came back clear they admitted me for further tests as they sensed something was very wrong. As scary as this was, I was relieved that finally someone was taking my pain seriously, but I was also sceptical that I wouldn’t get any closer to knowing what was wrong.

A couple of days later the Senior Orthopaedic Consultant came to ask us if we would attend his team meeting where a discussion of my case would take place.

I found myself in a room with around 10-15 doctors who discussed my case with me and my mom, and carried out a full physical assessment.

They told me that they suspected I had RSD but none of them had ever seen a case before, so they had made arrangements for me to be transferred to our local Children’s Hospital.

Less than 4 hours later on the 3rd July I was seen by the Pain Management Consultant at the Children’s Hospital, the very person I would have to wait 3 months to see.

The PM consultant discussed my history, arranged an MRI scan which ruled out any other problems and diagnosed me with RSD (Reflex Sympathetic Dystrophy). Finally I knew what was wrong, and although he could make no promises as to how long my path to recovery would take, or how many twists and turns there would be along the way, I had someone who believed my pain was real and there was a reason for the rotation in my ankle.

The following day, 4th July, he arranged to do a bier block which could possibly reduce my pain for the first time in months.

Looking back now it is ironic that Independence Day 2007 would be a defining moment in my battle to regain my independence. I like to call 4th July “Loss of Independence Day”. For some reason the nerve block didn’t have the desired effect and instead of reducing my pain the block caused me to develop balance and coordination problems, leaving me in a wheelchair.

The hospital had never seen this before and believed it may be a temporary complication which would wear off once the drugs began to leave my system.

I was allowed to go home for the weekend and it was then that the reality of the situation hit me. I couldn’t walk, couldn’t climb the stairs to the bathroom or bed and had to rely on my mom taking me everywhere.

When I went back to hospital on Monday morning, the consultant was amazed that the problems persisted and referred me to the Physical Therapists and Psychologist’s attached to his team and prescribed new medications.

I had never had a good relationship with Physical Therapist's in the past and the new ones would prove no different.

The PT's believed that because they had never seen RSD present with movement disorders before they didn’t believe they were linked directly to my RSD. I remember one of the first comments made by my Physical Therapist was “It’s not that you can’t walk, it’s that you don’t want to!”

Can you imagine how upsetting it is to be told that you can control your legs, when despite your best efforts your RSD leg shoots out in front of you throwing you off your balance and onto the floor?

At the same time, the spasms in my leg, which were previously like a heartbeat or pulse around my ankle changed to become a violent twitching and jerking of my big toe, which happened at regular intervals throughout the day. Already self-conscious about being in a wheelchair, people would now stop and stare at my toe and I became more withdrawn and isolated as a result.

During July and August PT made no impact on my balance and coordination and any attempts at desensitisation were impossible as no amount of medication would begin to take the pain away enough to make touching my leg bearable.

Finally the consultant began to wonder if the Gabapentin prescribed at the time of the block was causing the new complications and arranged to change me over onto Amitriptyline.

Yet again my body reacted to the new drug, my pupils became fixed and dilated and I was unable to focus. I wanted to remain as independent as possible and despite pleas from my mom to let her help me I attempted to get myself out of the bath tub. I reached for the side of the bath to lift myself out and before I realised that I hadn’t gripped anything due to my inability to focus, I had slipped, my arm went underneath me and I fell with the whole of my weight landing on top of my arm.

Within a matter of hours my arm was bruised, swollen and had begun to close into a fist.

As it was the weekend I went to my local ER and as luck would have it the consultant who first suspected RSD was there.

He immediately believed this was linked to the original injury and wrote to my PM consultant asking him to assess my new injury.

A few days later I received the news that I was dreading, - my RSD had spread to my right arm.

In an attempt to reverse the effects of the fall I was taken off the Amitriptyline and put on Lyrica, and booked in for further Physical Therapy, this time concentrating on my arm.

Yet again, the trust I had in PT’s was brought into question when despite the PM consultant insisting I had RSD in my arm, the PT overruled this stating that the way my hand had become locked into a fist was a protective mechanism and not linked to RSD at all.

Three months later, and despite weekly Physical Therapy, I was suffering complications due to my finger nails growing and digging into my palm, so it was suggested that I was taken to the Operating Room where my hand would be cleaned, the nails cut and a splint would be used to attempt to keep the hand open.

In the Operating Room the splint was made and moulded to the shape of my hand. I was given morphine as the doctor knew that my hand would attempt to re-close and return into a fist.

By the time I was returned to the ward it became apparent that splinting may not be the answer as the ends of my fingers had began to curl up inside the confines of the splint.

By the following morning my hand had somehow managed to reform a fist and I was in a lot of pain as the morphine was ineffective.

The splint was removed and I was discharged later the same day whilst the staff at the hospital rethought their options.

During the month following the spread to my arm, my leg was sort of forgotten with all efforts being concentrated on trying to reverse the most recent injury.

My walking was still extremely unstable and my mom was having to support me along with crutches to prevent me from falling. I had also developed severe swelling in my leg and was readmitted to hospital as the doctors needed to be sure my circulation was not affected and there was no underlying conditions other than my RSD.

Using crutches wasn’t easy with my hand forming a first but we did notice that if I applied downward pressure I could somehow open my thumb enough to get a loose grip on the handles. This gave me an idea that I could begin to work on things at home.

I started by forcing a thick marker pen into the gap between my thumb at first and trying to write. We also got a new puppy and I used to stroke him with my RSD hand.

We watched in amazement as each day my fist began to uncurl a little bit more until a week later, although curled into a loose fist, I could open my fingers when needed and grip a normal pen and write. Finally something seemed to be going my way and I began to believe I could regain control of my body despite being unable to control the pain I was in. By now I hadn’t been to school for six months and I agreed to try and return on a part time basis.

Unfortunately the layout of the school meant wheelchair access was difficult and I had to transfer outside the building if I needed the toilet and work in the library as I couldn’t gain access to many of my classrooms.

The physical effort of getting ready and travelling to school would increase my pain to the point that it was almost impossible for me to concentrate on my studies.

Eventually I was offered home tuition but it would take another two months to organise.

Just before Christmas my mom had to go and do some shopping for presents for the family and as the bad weather was increasing my pain levels I agreed to stay at home.

I spent some of the time on my laptop and then decided to get back onto my bed and rest. I somehow managed to bang my arm on the corner of the desk during transfer to the bed and by the time my mom returned home around 30 minutes later the whole of my lower arm had swollen to twice it’s normal size and my hand was trying to close back into a fist.

The last thing I wanted was to lose my grip again so despite the pain I began to work through some of the exercises I had done previously and managed to keep my hand open throughout this most recent flare.

I wasn’t due Physical Therapy and had no doctors appointments booked due to the Christmas break so my mom emailed a photo of my hand through to the doctor’s office.

We received a call by return and were asked to come to the hospital the following day.

The doctor, PT's and nurse examined my arm and my PM consultant confirmed another flare of the RSD in my arm. I distinctly remember the look on my PT’s face when I explained that she had told me I had never had RSD in my arm, it was just my body’s way of protecting me after an injury due to the fear of my RSD spreading.

My doctor told her this was a clear cut case of RSD and there was no way I was either consciously or subconsciously controlling the way in which my arm was reacting.

It was also explained to me that my nerves were so “wound up” at the moment that if a slight knock could cause such a reaction in my arm, then it was equally possibly that the nerve block all those months earlier could have caused a reaction resulting in my loss of balance and coordination.

Despite agreeing with the diagnosis, we felt that it was now time to seek a second opinion, particularly with a view to treatment options, and my PM consultant agreed to look into where else we could go in the UK that would have seen the sort of dystonic RSD I was experiencing.

The problem was in the UK that although RSD is predominantly an adult illness our medical system directed that given my age I had to be treated at a children’s hospital. Eventually it was decided that I be transferred onto Great Ormond Street Hospital in London, the leading children’s facility in the country.

Whilst waiting for an appointment to go there my medications were increased and I continued to have regular Physical Therapy sessions. My relationship with the PT’s had never been good and this wasn’t about to change now. I found that they often made remarks which were never quantified, the latest one being “If your house was on fire and you were upstairs alone, do you think you could get out unaided?” The realisation that I probably couldn’t upset me to the point at which I became extremely agitated and although the intention of the statement had been to ensure I was safe and secure in my home, the fact that no one had ever explained this and the PT’s seemed to persist in their belief that I was somehow responsible for the situation I found myself in was unbearable.

I already had had terrible experiences with PT’s over the past year and nothing was about to change any time soon, though my mom demanded that any remarks made in future be explained fully as they could often be misinterpreted.

Before I went to London another, seemingly small problem arose, I developed an ingrown toenail on the big toe of my RSD foot. As the toe was now spasming almost constantly, and due to the pain and hypersensitivity in my foot and lower leg it was agreed that it would be removed in the Operating Room whilst I was asleep in early April.

Whilst waiting for this procedure, I made the journey to London to see my new PM consultant who confirmed the diagnosis of RSD with the added complications of Dystonia and movement disorders and suggested that I may benefit from a full assessment with a view to being offered a place on their rehabilitation program. As I was aware of the success of the program within the United States I began to feel more optimistic about the future.

On 2nd April I returned to hospital for the operation to remove my ingrown toenail.

It was agreed that I would stay in hospital overnight and be connected to a PCP (Patient Controlled Analgesic) to try and control any increase in pain following the procedure.

When I came round in recovery I noticed I was keeping the staff amused as the minute I regained consciousness my big toe began spasming continually and more violently than before. My PM consultant came to see me in recovery and said he thought things would settle back into the cycle of intermittent spasms within a few hours – how wrong could he be.

Overnight the PCP did nothing to decrease my pain and the ring block in my toe was wearing off making things even more painful. Around mid morning we noticed my whole leg starting to shake ever so slightly and within an hour it was thrashing around wildly for one minute out of every three.

My PM consultant tried Diazepam to stem the shaking but again this proved ineffective though he still suspected the shaking would resolve itself. It was agreed that I be discharged and return the following day for the dressings changing.

When I returned the following day it took 2 nurses and my mom to hold me leg in an attempt to redress the toe. My PMC stood watching in amazement and admitted he had never seen RSD presenting like this before.

Over the next few weeks a number of attempts were made to control the movements in my leg with drugs but despite this and despite the fact that the toe was almost fully healed the shaking persisted.

Walking was becoming even more problematic. I already needed the help of my mom and my crutches but now I had the added complication of timing transfers so they did not coincide with the shaking which could potentially throw me onto the floor.

I returned to Great Ormond Street Hospital for my PT assessment in May. The lead practitioner there explained that although she had seen over 100 cases of children with RSD mine was only the second case she had seen with these types of movement disorders and I also had the added complication of the Dystonia as well.

Even though it sounded as if the odds were stacked against me she explained that she had manage to regain varying levels of function and mobility in all but a few very small number of the children she had treated and that if I was willing to put 101% into the rehabilitation program she was hopeful that it would prove to be a turning point in my battle against RSD. By this point I was ready to try anything, however difficult, to regain control over my leg in the same way I had recovered from the two flares in my arm. Despite being told that it would be the hardest thing I would ever do I was actually looking forward to it and hoping the eight weeks before I started the program would pass quickly.

Great Ormond Street Hospital spoke to the PT's at my local hospital about my RSD and the way in with it should be handled and the change in attitude was amazing.

Where I had always been reassured that they had seen several people with my particular complications, the staff now admitted that this was not the case and that basically as they had never seen movement disorders to this degree they had no way of knowing how to treat them.

With support from GOSH they began targeting exercises which would be reinforced during my stay in London and were aimed at reintroducing weight bearing in an attempt to control the spasms.

Despite knowing that my best chance of remission lay with the rehabilitation program I was also reffered to a neurologist who would assess the movement disorders and look at treatment options should the rehabilitation program not prove to be as successful as it was hoped.

A year to the day since I last walked I went to see a Neurologist about my movement disorders.

I didn’t remember him but it turned out he was involved in the initial diagnosis and was surprised to see how much worse things were than in July last year.

He and my Pain Management Doctor are currently involved in writing a paper and conducting a study into movement disorders in children with RSD.

Although the numbers studied are small, it is hoped that the paper will be well received as it is one of the first to specialise in childhood RSD with the complications I suffer from.

Whilst the nine other cases studied happened up to 15 years ago and long term follow ups have not been made, they have asked that my case being the worse movement disorders they have seen to date will form the basis to take this study further and allow regular analysis of treatment and the progression of the illness over a long term period.

Although the study only followed patients for a maximum of 3 years after diagnosis it is apparent that early diagnosis is essential if a successful outcome is to be achieved.

A reduction in tremors has been seen in half of those seen so far but very few have had a full resolution of the problem.

I was advised that Physical Therapy would be the best treatment option as it has no side effects and I do not tolerate medications very well.

If the PT results in a partial reduction in the tremors and Dystonia my Neurologist will then prescribe medications which will hopefully stem the spasms even more and hopefully bring on my best chance of remission.

Hopefully the Physical Therapy program will lead to a full remission and my story will bring hope to others.

dennyfan
09-27-2008, 12:32 PM
Ali, I thought I was young to be going through this but I am old enough to be your mother (I am 38). You have been through so much Kiddo & you still seem to have such a positive outlook. Your Mom must be so proud of you. I can't even begin to imagine how hard this must be for a person your age. I hope the new program is successful & you find remission. Remember that it happens most for those that are young & that are treated aggressively & it sounds like you & your Mom have fought hard to find that treatment. It sounds like the UK is no different than the US though in finding doctors that even believe in the pain associated with RSD. Finding good doctors is certainely the key. I am sorry your pt specialists have been horrid. I have heard that over & over again. I haven't had problems myself except that they hurt me but through really no fault of theirs. First it was because I wasnt yet diagnosised with RSD & then it was because they were trying things that were just flaring me up so bad I couldn't take it. They finally just gave up & said they were doing more harm then good. But I have heard stories like yours from people over here too hun. I don't think it is just your age. Part of it at least is our disease not being recognized y the medical community as a whole. Keep you positive attitutude because you are truly an inspiration whether you mean to be or not. It is truly my honor to meet you though I wish in heart of hearts that I it hadn't been neccessary for you to seek out support.
hugs,
Denny

dennyfan
09-27-2008, 12:51 PM
Loretta, Sorry it has taken me so long to write back. I belong to another board where I am a mentor & I have been very busy with it lately. It has taken what computer time I can tolerate. I can't believe you used to hang out in my "neck of the woods". What a small world!!! When we owned a boatwe would take it to Lake Billy Chinook but I liked Prineville Reservoir better. Prineville was more family oriented & people followed common boater safety better there. But I only live 20 minutes or so from the cove. A lot of people from the valley vacation over here to get to the better weather. Its funny to me how people think the "whole" state of Oregon is nothing but rain. People have a hard tie believing me when I tell them I live in the high desert of Oregon. It'slike I am lieing I guess or don't know what my own climate is. I mean we get 9 whole inches of rain a year where I live. Not exactly like the Willamette Valley as you know from being here. If you ever get the chance t come back it would sure be fun to meet for coffee or lunch or something. Thank you again for making me feel so welcome. You are a wonderful lady.
hugs, Denny

loretta
10-18-2008, 02:39 AM
Hi Denny, Thanks for the invite. I certainly would contact you, that would be wonderful. No immediate plans. Our daughter now married for 8 years would love to take her husband to Oregon, to the cove, coast and Eugene. My husband and I have a lot of memories of the cove. 17 years of 10 days. Wow, lots of skiing. We liked to stay in the E section up above. We had a motorhome and Blue Water ski boat, built by the cove. We have the boat here in Arizona and the motorhome is parked in Washington State by his Mom's house.We live pretty close to several lakes here and had lots of fun till, I pulled a nerve in my left hand, which now is crippled for the RSD. I didn't know I had RSD and that's how it spread full body. Misdiagnosed here and flew back to Eugene and was diagnosed in 1 minute at Sacred Heart Hospital by sports injury Dr. It's funny, I got RSD from surgery one floor apart several years earlier from a bad surgery. Guess, I'm still a little bitter over it, even after lots and lots of counseling. Anyway, grateful for so many things. Take care, Loretta

loretta
11-11-2008, 01:12 AM
Hi Lisa,
I'm sorry you have RSD. It's amazing how long we can have it yet learn more and more. I wanted you to know I live in Scottsdale, should you ever want to talk or post directly to me. I developed RSD the day following surgery back in 1996. It started with swollen arm and then frozen shoulder. It wasn't diagnosed as such, just complications from left breast surgery. I had PT and massage therapy. The rehab Dr. I was referred to and that oversaw my pt wanted me to see Orthopedic Surgeon. He was to operate to 'speed' up the process. Would still have to have PT. I said no thank you. I had already been thru about 1/2 (50) pt. I did the massage therapy on my own just before pt.
It was torture.So I finished out the therapy and had nearly all range of motion back.

loretta
11-11-2008, 01:40 AM
Hi Lisa,
I'm sorry you have RSD. It's amazing how long we can have it yet learn more and more. I wanted you to know I live in Scottsdale, should you ever want to talk or post directly to me. I developed RSD the day following surgery back in 1996. It started with swollen arm and then frozen shoulder. It wasn't diagnosed as such, just complications from left breast surgery. I had PT and massage therapy. The rehab Dr. I was referred to and that oversaw my pt wanted me to see Orthopedic Surgeon. He was to operate to 'speed' up the process. Would still have to have PT. I said no thank you. I had already been thru about 1/2 (50) pt. I did the massage therapy on my own just before pt.
It was torture.So I finished out the therapy and had nearly all range of motion back. Hi Lisa again, they told me it might move to other shoulder , I thought that sounds strange, I didn't have surgery there. Sure enough, a few months later after we moved to AZ, the right shoulder froze up.more therapy. Then while water skiing at Bartlett Lake, I felt a pull in my left hand, then started swelling. PAINFUL Dr. said RH arthritis. Didn't make sense, tests said no. Flew to Oregon, diagnosed by an hand ortho with RSD within one minute.

Hi again Lisa, I know it is hard to be honest with friends and family, they love us so much and can't stand to see our lives change and to be in pain and not be able to do what we used to do and love. I know I'm careful with my 29 year old daughter and my husband. They have both researched RSD on the net, so they know it's bad. They also both went with me to my Dr. of the past 4 years. But I feel caring for myself, means being discreetly honest.
I do have friends I can say anything to, two of them have RSD too. full body from a car wreck.My Dr. is a pschiatrist, neurologist and pharmacologist.
of course I can cry and say anything.
Lisa, do you go to any of the RSD support meetings at St. Joseph's hospital? They are once a month on a Saturday. It would be nice to meet you in person, family members are welcome, I brought my son in laws mother.
I don't drive a lot anymore, but still can.
Don't give up. and take care, Loretta Jewell

tiffanyc
11-12-2008, 12:38 AM
Hi everyone I'm Tiffany a 26 year old stay at home mom. My boyfriend was diagnosed with RSD back in May..We have two children a 9 month old and a 3.5 year old. I am very glad to find this forum. Geoff got in a motorcycle accident in March and broke his foot and it turned into RSD which is preventing him from walking without crutches. He goes to physical therapy 4 times a week went through months of epidural injections and now has (sorry i don't know all the terminology involved) but he has the thing implanted in his spine and an internal battery. Well he had the internal battery implanted above his butt and becuase he is so skinny it was literally ripping out so he just had it removed and they now put the battery in his stomach. Luckily he was working when the accident occured so he is on worker's comp. He is on so many medications it is crazy and he is such a different person...I am glad to find this board to learn more about this condition and maybe find someone like me that is having to care for a loved one with RSD. Times are tough here because we are living on worker's comp and I can't work because he isn't able to take proper care of the children. We have applied for disability once and already been denied. We are in the process of reapplying...

loretta
11-12-2008, 06:12 PM
Hi Tiffany and Welcome,
I'm so sorry what you are going thru. RSD is a unbelievably difficult condition for both the person having it and the family. Hopefully, getting diagnosed early and getting treated, it won't spread. The medications totally change a person, I am that person in our family and my husband has had many adjustments because of it.
The medication probably is pain meds, anti=seizure meds,maybe neurotin or lyrica, make you very tired, very! Also with me I gained weight, as I was so active in sports before and worked out. I've had it 12 years now and full body. Depression is a big part of RSD as it affects the Limbic part of the brain which controls that part of us, as well as decision making. I also take two different blood pressure meds- didn't have bp issues before rsd. What helps a lot for me in an anti-anxiety med. called Lorazepam and a sleeping pill. Sleeping or lack of it is an issue with most of us. Short term memory or lack therof is an issue for most of us. I sometimes grope for works in speaking, and a little slow in my thoughts. It truly is a life altering event.
I got counseling to cope with that fact and deal with chronic pain. My phychiatrist is also my pain management Dr. He is a neurologist and pharmacologist, experienced in rsd.
My husband and married daughter with me to the Dr. to ask questions and both have read on the rsd sites. My daughter is a court reporter and has done medical malpractice depostions for a rsd lady. It's very hard on her. she is 29.
I'd encourage you to read as much as you can on this forum.
I don't qualify for ssd but have group insurance thru our business we own. Personally, I was going to use an experienced attorney if I qualified. RSD is recognized as qualifing for disability. I know I will never work again, as many on this forum. Keep trying and get an attorney if they don't cooperate. When you get it, they go back to your application date for back $ and attorney takes whatever he charges out of that.
If there is a support group in your town, it would be good to get in touch with them and attend. They can provide references and a lot of support emotionally. Usually, the meetings are at a hospital conference room. You can look up RSD. org and punch in your zip code and they give you the closest one to you. Sometimes, just calling the hospital and asking for list of support groups. If not RSD, maybe even a 'chronic pain' group or Rheumatoid arthritis group.
There is a very nice lady whose fiance has rsd, is here, but just can't remember her name right name.
There are things that I have learned for pain distraction. Listening to music, reading, being involved on this site, petting my cat, keeping in touch with friends both here and former state, by phone, or letter. scented candles. funny movies. trying to keep a positive attitude.
Thank you for the picture of your family! I love kids and being a mom. Our family traveled a lot, water skiied, snow skiied, played tennis, worked out , 10k runs. swimming. Swimming is one of things that has really helped me the most to keep walking and mobile.
My toes started curling, and my Dr. gave me exercises to do in the water and got them back on the floor!
Physical therapy is really painful, I went thru three different events. My RSD came the day following breast surgery, swollen left arm, then frozen shoulder. that fixed after over a year with a few months reprieve, then moved over to right shoulder, more therapy, then pulled a nerve while water skiing. Was diagnosed with Rheumatoid Arthritis, WRONG. Changed Drs. and had RSD since the surgery. 4 years late diagnosis.
Did Geoff have blocks? Is that what you meant by injections. that and pt. are your best hope for remission, and that does happen! it really does. After my therapy and getting the use of my arm back, I was back to tennis, everything, till it hit again the other side. then had several months pain free, till the water skiing thing. Since then, it's been down hill.
You will find lot of very kind supportive understanding friends here, on both sides. It's wonderful you are reaching out to others, You'll better be able to understand what Geoff is going thru and receive the encouragement you need as a caretaker. I am so very sorry your family is going thru this. We had never even heard of RSD, as obviously half the drs. in this country haven't either. But unfortunately it is becoming more and more common. Please, reach out anytime and you will have a lot of support. Take care, Loretta

rsdslade
11-14-2008, 02:15 PM
:Wave-Hello:My name is Samantha. I have had RSDS for eight months now. I was given RSDS by my doctor when he attempted to give me a "temporary cure" for my Endometriosis by administering an injection of Depo-provera to stop my monthly flow. My doctor then attempted to tell me that the pain that i started feeling that day had 'nothing to do with the injection that was received at this office" and that it was just "minor back spasams from an underlying case of sciatica" and that all of the pain in my hip, leg, foot, and back was just "all in my head and I should stop worrying about it." When I went to an neurologist and was immediatly rushed into the emergency room due to severe pain from the doctor just touching my leg, I was then diagnosed with RSDS. I called the doctor who gave me the shot of Depo and told him that I had been diagnosed with RSDS (six months after the initial injection) and that I now had little to no hope for any type of 'true remission' of the disease due to the lack of attention and care by the medical professionals looking after my health. My doctor proceeded to say "Oh my god, I really screwed up, I am so sorry" and all i could do is laugh at him. To this point, because of his lack of care and incorrect diagnosis, I have been unable to get any type of medical coverage through the state, and up untill this point, (since march) I have been unable to work. So I am out possibly thousands of dollars in wages and have no known date of when I can return to work...so go Dr. Douchewad!!! other than that, life is peachy lol!!

loretta
11-14-2008, 08:11 PM
Hi Samantha,
I am so sorry you have RSD. Injections IS one of the ways people get RSD. It must have hit a nerve. You can't understand the damage of a Dr. Not listening to your complaints after the procedure. The 'I'm sorry' doesn't cut it. This is potentially a disorder that is life time leaving you 'insurance' issue. You will never get private insurance with RSD in your record. Most of us are unable to work, The medical procedures and meds you'll need the rest of your life are expensive. I'm not an attorney, but I am somewhat educated in this area of law. I'll write more in a few minutes. soon, Loretta

loretta
11-14-2008, 09:40 PM
Hi Samantha,
Hi again, My mother died at age 46 under the care of an idiot. My father sued and won the suit. That's been 35 years ago, but it was like yesterday. He lived 8 years and never remarried. We had a video deposition, because we knew she wouldn't be alive for the trial. Anyway, my daughter is a court reporter and I know she did a case of rsd against a Dr. for negligence. I know we got a medical practice attorney from a bigger city 100 miles away. Local attorneys don't like to up against their golfing buddies. Insurance companies representing Drs. etc have deep pockets. Most of these go on a no cost and attorney benefits by a percentage of the award and nothing if there is none.
I didn't sue my Dr. I wasn't diagnosed for 4 years. You have two years from the 'event' causing the rsd or 2 years from when you were diagnosed in most states.
We had moved states after my surgery and physical rehab. A few months later, it moved to the other shoulder, RSD. More physical therapy. Still didn't know it was RSD. A couple years from the original surgery, I was water skiing and felt a pull in my left hand.(surgery side-left breast and arm pit.benign) Fingers swelled and so painful. Dr. said it was Rheumatoid Arthritis. Didn't sound right so flew back across country and saw a sports injury group I knew and was diagnosed in 1 minute and had neuclear tests at the hospital.
The surgeon that had ruin my life, went on vacation the day following surgery. My arm swelled up terrible and his partner withdrew fluid 3 days. Doc came back and my arm was frozen, sent me down the hall to Rehab Dr. to oversee P.T She said the Doc messed me up. I came back home and got a neurologist and hand specialist and started PT again. It was rough again. Used a Tens Unit. My hand was frozen solid-fixed fingers straight. They were able to get them to bend just part way and desensitize my hand. That is such an important part of treatment-desensitize. But at least, I can cut my food now and drive, shut my car door myself, zip my clothes, button the, and type. Then I was ok for a while, then it moved to the other hand and then both feet and legs. Saw another neurologist , joined a rsd support group. The neurologist said full body, generalized rsd. Now have the lesions, high blood pressure, heart condition. RSD is an automic disorder that effect the circulation, blood pressure, high and low, loss of memory, the limbic part of brain controls short term memory, decision making. depression. Depression is no small matter, The meds for everything makes you lose your energy level. I had spasms, electric jolts during sleep that would raise my head right off the pillow. Had jerks, involuntary movements. My toes starting curling off the floor. Dr. had me exercise in the pool, dailey and got them back down to the ground.It's in my spine,lower back, neck, face, Internal organs. I don't leave the house maybe 3-4 times a month. Can't walk long or stand long.
3 years ago I woke up and stumbled into the door and bathroom, I passed out and was out over an hour. When I woke up, couldn't get up, but beat on the wall and my husband opened the door. I lost my bladder and colon, and just said call 911. He said he heard my get up-was upstairs at his office- it was at least an hour. Paramedics came and couldn't find a pulse, I had passed out again. Told my husband I was dead. Then got a pulse and got to hospital. The blood pressure was 60/40. Was in 4 days icu and $16,000 tests-Think the bill was $30,000.
I'm tell you all this, not to just talk about myself, but to let you know the road ahead can hold so much we don't know about. I expect someday I'll be in a wheelchair. I had the flue this week and blood pressure shot up 160/109 I'm on two different blood pressure meds.
Sometimes I'm sorry I didn't file suit, I can't work, I loved my job and social life. My husband and I traveled a lot. Lots of trips as our daughter grew up. I was traveling a lot with a girlfriend, in fact, the next day from the passing out we were to go to Maui. I miss that, we went every year. My husband doesn't like to go as much as I do. My daughter and I traveled a lot in her teenage years, and then we vacationed the 3 of us.
Our economic lifestyle has changed too as result of not being able to work. There are so many losses. My Dr. now says, it started with my breast surgery 12 years ago. The following day my arm swelled up so much.
Anyway, just something to think about or talk about to those that love you. No matter what you decide to do, it's always good to make a timeline of your health conditions, or journal.
I'm going to exercise and stretch now. I gained so much weight on the meds, I'm working really hard to get it off. I'm almost up to 15 lbs.
I hope I didn't offend you or try to get in your personal affairs. Certainly not to discourage you. I just remember, when I was told, I had never even heard of RSD and not a clue what lie ahead. I can't even get disability, as we've always been self employed. Take care, Loretta

rsdslade
11-15-2008, 01:06 AM
Hi Samantha,
Hi again, My mother died at age 46 under the care of an idiot. My father sued and won the suit. That's been 35 years ago, but it was like yesterday. He lived 8 years and never remarried. We had a video deposition, because we knew she wouldn't be alive for the trial. Anyway, my daughter is a court reporter and I know she did a case of rsd against a Dr. for negligence. I know we got a medical practice attorney from a bigger city 100 miles away. Local attorneys don't like to up against their golfing buddies. Insurance companies representing Drs. etc have deep pockets. Most of these go on a no cost and attorney benefits by a percentage of the award and nothing if there is none.
I didn't sue my Dr. I wasn't diagnosed for 4 years. You have two years from the 'event' causing the rsd or 2 years from when you were diagnosed in most states.
We had moved states after my surgery and physical rehab. A few months later, it moved to the other shoulder, RSD. More physical therapy. Still didn't know it was RSD. A couple years from the original surgery, I was water skiing and felt a pull in my left hand.(surgery side-left breast and arm pit.benign) Fingers swelled and so painful. Dr. said it was Rheumatoid Arthritis. Didn't sound right so flew back across country and saw a sports injury group I knew and was diagnosed in 1 minute and had neuclear tests at the hospital.
The surgeon that had ruin my life, went on vacation the day following surgery. My arm swelled up terrible and his partner withdrew fluid 3 days. Doc came back and my arm was frozen, sent me down the hall to Rehab Dr. to oversee P.T She said the Doc messed me up. I came back home and got a neurologist and hand specialist and started PT again. It was rough again. Used a Tens Unit. My hand was frozen solid-fixed fingers straight. They were able to get them to bend just part way and desensitize my hand. That is such an important part of treatment-desensitize. But at least, I can cut my food now and drive, shut my car door myself, zip my clothes, button the, and type. Then I was ok for a while, then it moved to the other hand and then both feet and legs. Saw another neurologist , joined a rsd support group. The neurologist said full body, generalized rsd. Now have the lesions, high blood pressure, heart condition. RSD is an automic disorder that effect the circulation, blood pressure, high and low, loss of memory, the limbic part of brain controls short term memory, decision making. depression. Depression is no small matter, The meds for everything makes you lose your energy level. I had spasms, electric jolts during sleep that would raise my head right off the pillow. Had jerks, involuntary movements. My toes starting curling off the floor. Dr. had me exercise in the pool, dailey and got them back down to the ground.It's in my spine,lower back, neck, face, Internal organs. I don't leave the house maybe 3-4 times a month. Can't walk long or stand long.
3 years ago I woke up and stumbled into the door and bathroom, I passed out and was out over an hour. When I woke up, couldn't get up, but beat on the wall and my husband opened the door. I lost my bladder and colon, and just said call 911. He said he heard my get up-was upstairs at his office- it was at least an hour. Paramedics came and couldn't find a pulse, I had passed out again. Told my husband I was dead. Then got a pulse and got to hospital. The blood pressure was 60/40. Was in 4 days icu and $16,000 tests-Think the bill was $30,000.
I'm tell you all this, not to just talk about myself, but to let you know the road ahead can hold so much we don't know about. I expect someday I'll be in a wheelchair. I had the flue this week and blood pressure shot up 160/109 I'm on two different blood pressure meds.
Sometimes I'm sorry I didn't file suit, I can't work, I loved my job and social life. My husband and I traveled a lot. Lots of trips as our daughter grew up. I was traveling a lot with a girlfriend, in fact, the next day from the passing out we were to go to Maui. I miss that, we went every year. My husband doesn't like to go as much as I do. My daughter and I traveled a lot in her teenage years, and then we vacationed the 3 of us.
Our economic lifestyle has changed too as result of not being able to work. There are so many losses. My Dr. now says, it started with my breast surgery 12 years ago. The following day my arm swelled up so much.
Anyway, just something to think about or talk about to those that love you. No matter what you decide to do, it's always good to make a timeline of your health conditions, or journal.
I'm going to exercise and stretch now. I gained so much weight on the meds, I'm working really hard to get it off. I'm almost up to 15 lbs.
I hope I didn't offend you or try to get in your personal affairs. Certainly not to discourage you. I just remember, when I was told, I had never even heard of RSD and not a clue what lie ahead. I can't even get disability, as we've always been self employed. Take care, Loretta
Loretta...Thank you so much for your kind words. They really helped me and my boyfriend. I understand that I am in for a long and techerous battle that is going to go uphill at a 90 degree angle. I have already started on that uphill battle as the RSD that started in my right hip has spread up to my right shoulder, and my chest as well as my right side and I think my urithra. I am not sure. But...I do know that it is very painful and sometimes I am just not willing to go on fighting, but I know that I have to. I know that if I don't...no one will fight for me. My boyfriend is very supportive and loves me very much, he takes such good care of me and he really looks out for my best interest. again...Many thanks:hug:

crunchberry
12-01-2008, 09:26 PM
Hi there...

I don't know if finding this forum is good or bad. My 11 yr old son was in a freak boating mishap 6.5 weeks ago. Our boat went airborn and he was in the cuddy cabin with some buddies. He got knocked around the cabin and came down hard on a ledge hitting his spine in the middle of the shoulder bones. We heard the scream.

He was diagnosed by the family dr as having a sprain and strain since the xray was normal. The first week, he got better. AT the end of the week (was on darvocet) we let him go to a bday party. Next day he went to physical therapy and then his pain has gotten progressively worse instead of better.

2 weeks in, they gave him an MRI and the Cleveland Clinic said he probably micro fractured two vertebrae - could take up to a couple months to heal. Put him in a back brace for the pain.

Pain got worse, went from vicodin to percocets and ultrams.

After 5 weeks, went back to same doctor who said he was cured and was probalby faking the pain. But in the slim case he wasnt (he is not), it might be RSD and to see a Pediatric Nuerologist and Pediatric Pain Mgmt.

Then went to a party and talked to two friends of family who are adult nuerologists that told me that he was faking it since kids CAN NOT be in pain for more than 2 to 3 weeks - they heal to quickly. And that he was probably just addicted to the percocet.

My son is in all the gifted programs, plays ice hockey, soccer and is well liked - he is not faking!!

During this time went to the CC spine center where one doctor had no idea what was wrong and another doctor said go see your family physician. The family physician meanwhile said - oh you have the Cleve Clinic drs - go see them. Pass the potato the game is called.

Could not see a pedicatric Nuerologist so called up the ped ortho who said - well I will diagnose him with RSD so they will see him faster. So in a month, we go see the nuerologist.

His symptoms - pain that NEVER goes away - constant. Muscle spasms - very severe that causes him to scream sometimes - 4 to 10 times a day. Complains last week that it the pain is burning. We have not been able to touch his back at all in 6 weeks - extremely sensitive. But able to wear shirts and lay on his back. NO DISCOLORATION except mottling on one day last week.

So he does have a couple symptoms but def. missing some of the others. I do NOT want him to have RSD. I read your stories and others and I have no idea how you all deal with this. Had no idea it even existed till last two weeks.

I have heard that if it is found early - remission is possible - anyone know of this?
Anyone been tested for other nerve disorders it might be? I am grasping at straws since it is tearing me apart to not be able to take the pain away.

Please email me if you would like. There is so much information out there, it is tough trying to weed thru it all.

Finally, I have read a lot of the stories on this forum and they have brought me to tears but I am so surprised at the bravery you guys show every day. I hope my son does not have this - but I have found a new disorder to support since after learning about this - you can not forget it.

Happy Holidays. Crunch

mollymcn
12-03-2008, 10:14 PM
I am a lawyer and a former medical school professor. I have fibromyalgia, pretty badly, so I took a lower stress job that doesn't damage my health as much. I know a little bit about living with chronic pain, and enough to know that RSD pain is far greater.

I joined Neurotalk a couple of years ago. I do not have RSD. My best friend does... I'll call her Penguin. Penguin has had RSD for 22+ years, since she was 12 years old. It started with a sports injury in her right knee, and after she had a baby 3 years ago, the RSD spread to her head, neck, torso, right and left arms, and internal organs.

Penguin needs support and understanding, so I decided to learn everything I could about RSD -- research, treatment, medicine, psychology, patient perspectives. I hope I can make her loneliness a little less.

Also, sometimes I feel lonely and scared of dealing with RSD and the 'caretaking' responsibilities. I don't want to do anything to make it worse!

The third reason I'm on Neurotalk RSD board is because Penguin no longer posts on Neurotalk because she found it overwhelming, and scary. So I read it for her and share non-scary tidbits with her.

That's my story.

Coerley
12-11-2008, 04:45 PM
Hi Everyone,
I am new to NeuroTalk. I was looking up information about clonidine patches and RSD. I am finally getting some relief from my RSD with the clonidine patch. Here is my story:
I was in an auto accident back in early 2001. A tree fell on my car from a tornado while I was driving. I do not remember what happened but after months of being treated with I don't see anything wrong (as the hand specialist in my area stated), the doctor finally examined both hands and realized my thumb was dislocated and my tendon was torn. And he was a hand specialist. After 2 surgeries, one fixing the dislocation and loose thumb and the other was fusing my thumb. The pain did not stop so my family physician sent me to Dr Ostermann, a well reknowned hand specialist from Philadelphia. He was the best. Talk about a doctor that cares, I was at his office at 11 pm and he still took 1 hour to talk to me about my care. He was supperb. He told me that my fusion did not heal properly and that it needs to be fixed or wait until it breaks. He stated that it should not have been fused in the first place. It was a mistake, a surgery that should never have happened. I was so upset, that surgery cost me my job and it was not even necessary. Anyway, he refused my thumb, which is ok now, but my RSD is horrible. Since seeing Dr. Ostermann, I have been to pain specialists, neurologists, anyone that would see me. I stopped 2 1/2 years ago. I was tired of hearing "You can't take the meds that will help so there is nothing I can do for you." I heard that so often that I just gave up. This past August, my family and I were in an auto accident where a young kid hit us head on and down the entire side of our van. I remember the entire accident as I was driving, but I don't remember what I did with my hand. I started doctoring again because it got so much worse (which I didn't think could happen) than it was. A new anestheisologist came into our area from Philadelphia that my family physician referred me too. For the first time since Dr. Ostermann, I didn't feel brushed off, I felt good. He didn't tell me there was nothing he could do. In fact, he laid out a few options on the table and said in two weeks he will have a treatment plan for me. I am now on Clonidine Patches. It has been one week and my pain is getting better. I did forget to mention that I had to nerve blocks also. They didn't help but made my neck and face so swollen that I could barely swallow. I still have the burning and the tightness, but the worst of the pain is almost gone.

tracidreams
12-12-2008, 01:31 PM
Hi All~
I look forward to meeting many new friends here, as I now realize I have put off joining a group forum like this for way to long. I fell and broke my left patella(knee cap) Oct of 2001, had burning pains in knee that far exceeded any torn miniscus or other. I knew this from having miniscus surgery on right knee in high school and this was nothing close to the same.
From here, I was passed over by my doctor saying it was just arthritis, said she saw nothing in the x-rays, and being the stubborn Irish gal I am, I would not except this and said I want to be referred on to orthoped! From there, he was angry at the fact this doctor let me walk around untreated with two fractures in my knee for months...
Next, Mri's done to check for soft tissue damages as well, which there was(I had a 3 in mass of tissue ripped off floating around behind cap and torn up cartalidge, so he said this would of course require that ol' scoping surgery many of us are so familiar with.
Problem with this, by the time 1st surgery time came my leg was totally on fire. After this was done the pain got even worse? He was really getting puzzled at this point since he knew he cleaned up all damaged areas and fracture should be pretty well healed by then! He said we can take one more look in there Traci but I dont think we will find anything, if we do we'll fix it ie; re tears, etc. So, on with #2! Right before they wheel me in for surgery he brings in the anthstegs. with him into my waiting room and pulls back my sheet and said let us take one last look at that leg. My leg now was purple and blue? It was known to do this often now, go red to blue to purple. Then they said were going to do an epideral on you for extra pain just incase?
I had no clue why at this point, I had never heard of ever having to have this much numbing done for a scope. So they go in, then bring me out. Found nothing. But in his own words said "We know she has what they call AN ANGRY KNEE" and he then was confident to say she has what they call RSD! They could'nt give me enough injections to take the pain away after this stupid scoping last time around! It was a nightmare. I think I used up there years supply of fentenol and vicodins.
Nearly 8 years later, hear I am. with many more stories, treatments to tell, experience under toe to hopefully help others just starting out! I know there are many out there worse than I but each of us are hurting beyound what any living thing should have to, thats all I know. And, I believe my new theory to be a very strong one! Labratories and testings are great, but if the rats don't talk back you might as well throw away the beakers! So, with that being said, I will leave you all for now, but must say I believe the strongest weapons we carry is our daily experiences... We have to learn to make our doctors and loved ones listen to us, but do it a fair and honest fashion. Don't hold back some of the real things we are feeling but are afraid to tell anyone, quit feeling like you can't tell your doctor all your symptoms each and every visist! You must! Because they change constantly from visit to visit. Keep a journal log, date it daily, write the pains and problems you experience. Then take the collected data to your doctors/specialists and they will make copies for your medical file! Take pictures of your color changes, skin rashes, blisters, etc., as these also come and go and doctors can not possibly catch this all the time. I tell you this because my story has many professionals who claim to know what they are doing, or call themselves doctors but are themselves just as puzzled as we are about the whole thing! At the same time they naturally/not intentionally always tend to think that such a major, multi-symptomatic, complex disease must be somewhat made up at times or added to, exhagerrated whatever you want to call it. Remember they are also just men and women and could get RSD just as easily as we did and hopefully never will.
In the mean time, peace out to all of you and anyone who has a loved one or family member serving in the military for us. Tell them I say "Thank you for Their bravory".
What they do every day is probably the most inspiring thing I could ever ask to see in action as far as endurance and strength goes. And when I can't get out of bed some days and wish I could just (pardon me for saying this) shoot my leg off because the bone pain and spasams are so unbearable and theres nothing I can do to make my leg and foot get warm... I think of how our men and women over in the middle east don't have beds to sleep in a lot of nights, and no showers to soak in, no computer access, no phones, cleaneness(you can throw that one out the window) they can't take showers either. If they get hurt they make do, and they don't get to come home for who knows how long... And to top it off, no matter what skeptics think or say over here, they belive in a cause! And they will fight to the end for it! This last part of my message was meant to inspire us not discourage us. People like this can be the best examples of "Love in Action" "Hero's" "Strong&Meek" "Humble". This is how we need to be in our battle for our lives again! We love our lives in action and want them that way! It takes strength and meekness to walk in enduring times. Yet we must remain humble to all others in pain no matter how high our disease ranks on the "MCGILL PAIN SCALE" at a whopping 47! (all other pains well below RSD-thus RSD being still recorded as the most painful disease to date!
So, remember, when your feeling whipped and beat. Dont forget you are taking on one of the biggest physical challenges you ever possible could in your life and your doing it! Others are watching us, and those who are also finding out they have it and who have it and don't yet know how to identify it need people like us to make everyone aware of this problem that does'nt seem to be going away for now.
However, I must say the newest "hyperbaric chamber" treatments do look most impressive along with the sucess rates!
I warned everyone, I talk to much!
and this was my quick response...(hee hee hee)
God Bless all you fellow heros and tough guys and gals out there!
Traci

superduck95
12-13-2008, 10:54 PM
Hi everyone! Unfortunately I am not new to RSD. I had two episodes when I was younger. One when I was 13 and one when I was 18. I had rsd in my leg and foot, and with both occasions it came on suddenly with no injury. These episodes only lasted a few months and then went away. I am 32 yrs old and having my 3rd episode of RSD and this episode is the worst ever. My story of my 3rd episode sounds amazing and unique to everyone I tell it to including doctors. So here it goes. 6months ago I woke up with major swelling in my riight leg and ankle. And again I did nothing to cause injury. I didn't fall or get injured playing sports, nothing like that. It took 3months to get a diagnosis after seeing many doctors and getting many tests done, as I;m sure many of you are aware of. I have been going for pool pt which hasent been helping. With the amount of pain i am in daily it is very hard for me to bear weight in water let alone on land. One of my doctors has me on Lyrica but I am not noticing any improvement with that either. I have had 1 nerver block done and didnt have any luck with that either. My doc now is doing a treatment where a cathreter is inserted into your spine to have daily injections of steroids (i think) to try and reverse the rsd. He is also numbing my foot and leg and trying PT that same day to hope the PT's can work with me and my pain threshold a bit easier. But again I am not having nay results with that. My doc also wants me to take Cymbalta and to try not taking the percot. So I will see how well this goes over. Will post more later when I am feeling up to it. Can't sit in a chair for very long. I look forward to chatting with everyone. !

loretta
12-16-2008, 10:42 PM
Hi Traci and Welcome!

I'm so sorry you have RSD. I've had it is '96 following surgery but didn't get a 'wrong'diagnosis till 2000 ," well what do you know, RA" but no rheumotoid factor in blood. That doesn't make sense, so I fly a few states away to sports injury Doc, 'ortho' and he says RSD in 1 minute followed by positive testing. It's wonderful you found this site, full of loving compassionate friends, lots of knowledge and understanding going on here.

We have a couple who have HBO in their home and are doing quite well with the treatment. I have talked with Diana A and was very encouragedd. Asked my Dr. about the treatment and he is very enthusiastic about it. currently building two clinics and putting in hospital grade HBO. He is a Neurologist, Pharmacologist, and Psychiatrist. I've been going to him for about 5 years now and have lowered pain level, no depression, and no spasms, electric jolts, jerks, etc that I has having dailey. Cymbalta 60 mg. is only anti-dep. I take. WAs on 2 double and thriple dosed antii-dep. before. Was on 3200 mg. ofNeurotin and now take 100 Lyrica. Vicodin for pain . I'm not saying I have really bad days, but am doing better. Last couple weeks were the worst in my 12 years. Have blisters for the first time, big ones.Thank you for the picture idea, and of course journeling. I have full body, generalized plus trigimenal nerve on left side, plus fibromyalgia.

Do you have a support group in town? or someone to talk to in your area? You are welcome to PM anytime. Have you had any spreading? I haven't had surgery since my initial breast biopsy that caused left arm swelling, followed up with left frozen shoulder and 100 PT and massage therapy, followed up by right frozen shoulder and more PT. I have found massage therapy to be very helpful, plus other distractions like scented candles, music, petting my kitty, reading, writing cards and phone calls to others that are alone, elderly, chronic pain, etc. My Dr. is wonderful and see him once a month, pain management. I try to stretch dailey and meditate. Spritituality is important to me. My husband is very supportive and we have a daughter that is knowledgeable and supportive.
I used to dwell on all the things we used to do as a family, Our daughter and I traveled a lot too, and also our son-in-law. Haven't given up hope on that.

Please know we all care and are so happy to see you with us. 'not too long for me' Loretta Jewell

loretta
12-16-2008, 11:14 PM
Hi Superduck95!

loretta
12-16-2008, 11:29 PM
Hi Superduck95!

I guess I punched the wrong button too early. Anyway, welcome to NeuroTalk. You'll find so much comfort and encouragement on this forum. So many wonderful, encouraging friends and knowledgeable, caring, sympathetic and understanding friends. It's good the 3rd time around you got a diagnosis. It was my 3rd time around too, the first 2 'spells' were from surgery and the third was from water skiing on my left hand. Misdiagnosed and didn't get pt soon enough, so have a claw for a hand, but at least can cut my food, and put on clothes. I also found warm water therapy in a pool wonderful. We have a heated pool and I spend a lot of time in it, especially in the summer. swimming helps so much to keep from freezing up. I have full body. 32 is young. Hopefully you can get it under control. I believe the first two times I had so much pt and massage therapy was responsible for getting the use of my arms back and also touch therapy allowed me to get use of my limbs without being sensitive to touch. At the stage I'm at now, I have a lot of skin lesions, and now blisters. I'm checking into HBOT. My Dr. will have the first two units in my state 'out of hospital' His are hospital grade. Now, hoping my insurance will cover this treatment.

Percocet, I know you are in a lot of pain. The Cymbalta helped me, So did the Lyrica, but now am going down on mg. of Lyrica to 100................ Do you have blood pressure issues? Many do because RSD is a autotomic disorder, affecting involuntary organs I have both high and low blood pressure. High is the sympathetic nervous system and low is the parasympathetic nervous system.

Hope the best for you and don't give up. You'll hear from a lot of friends from here. May be a bit slow because of time of year, but it will pick up. Take care, Loretta Jewell

angelrsd
12-20-2008, 01:52 AM
hi im carrie i was 16 when first got rsd from car accident 11 yrs later whole body organ involvement i used to go to the mass general chat light years ago i swear. i live in tennessee now have 2 great girls and a wonderful husband. the only thing that keeps me goin is those 3 ppl and the fentlyn (sp) pump i have had for the past 5 yrs. and finally having great docs. ive been thro so much since rsd its unreal just to look back at it all and to think that i thought 1yr of rsd would be horrible 11 yrs has been unreal. always think forward one day they will find something that will help (hopefully !!) and more long term thanks for listening to me ramble

-carrie

loretta
12-20-2008, 03:42 PM
Hi Carrie,

Just wanted to say Hi! I'm happy for you in having a loving supportive husband and two girls. I am sorry you have rsd and especially getting it at such a young age. We had our one and only daughter at age 31. She is 29 now and a wonderful encouragement. She and my husband have met my Dr. and also did their own research on rsd. That really helped them to better understand. I'm hoping to try the HBOT when my Dr. gets them installed in his two new clinics. He is also doing more research. He is a Neuro. Psych. and Pharmacologist. One med that has really helped me is an anti-anxiety med, 2mg. 3x day, Lorazepam, keeps me calm and less pain. Hope you are having a comfortable day- Take care, Loretta Jewell

angelrsd
12-22-2008, 01:19 AM
hey loretta
thanks so much. it was hard but found out quick who true friends were that is for sure. yes i am lucky to have such a great family . it would be aot harder if i didnt trust me .. the two docs that treat my rsd are a neuro and pain managment. they but are doing current rsd research and but very excellent docs i got luchy here in nashville when i moved . wouldnt be alive if it werent for them .. where are you at again ?

-carrie

tracidreams
12-27-2008, 10:22 PM
Loretta~
thank you for responding so warmly to my intro. I have no clue really what I'm doing in here as far as all these different "inner chat" supports, and "friends" and so many other things to do as far as this whole profile page it looks like yet. So, you'll please have to excuse me if I appear scatter brained and short minded. I am. (smile)
I am happy to hear you are also blessed with a family of love and supportt. I just recently placed a post to a lady regarding discouragement today. If you want to check it out I think you can get to these things through viewing our profiles can't you? I'm not sure. Please let me know if that's even possible for future reference.
I forget what I am talking about easily, just to forewarn you ahead of time. And can tend to bunny trail at times, simply because I talk alot! Just tell me to be quiet (Heh-Heh-Heh).
To answer your question about all over body rsd... My "pain Management" doctor #6 who won't do any invasive procedures on me what so ever because he says I've had them all and it would be a waste of time and a shame to put me through all that pain again if they did'nt last (ie; rhizotomies, symp blocks, bier blocks, trigger pts, ice baths/hot steam baths contrast/which was totally stupid by the way).
He said if I would have come to him a long time ago, like back in 2002, instead of the other PMS's, he would have been able to help me alot more with his aggresive "9" block series to the symp chain. So, he just tells my husband and I that I will have this for a long time, and that It could be worse, and at least I'm walking and using it since I listened to their advice and exercised the crap out of it years ago. Ultimately, me getting more use of it back is credit due to God, and him giving me the stubborness, and "good" anger that I needed to remind that I did'nt want to lose my legs and their mine. He gave them to me, so I shall fight for them as hard as I can & want. Question is'nt so much can we, but do we want to fight each day. In this sick kind of unexplainable pain it is so easy to just throw in the towel. But, it seems for me personally, Since I started asking God to channel all that pain into motivation, and that if He did'nt do this for me I knew I would die. I told him, I will move, I will pick up my matt and walk like the man waiting at the healing pool in the Bible waiting to be healed! Funny, the whole time he layed there on his mat it says when Jesus asked him why don't you get into the pool? The lame man blames the other people around him that also are in need of healing but are in fact doing what ever they need to to get in there. The man just says they are always in my way therefore stopping me from getting in. Jesus "DO YOU WANT TO BE HEALED"? and the man says yes, then Jesus says, "THEN PICK UP YOUR MAT AND WALK"! All along the man had put his faith in hopes that the pool might have healing powers. When all along The One/Savior/Jesus standing right in front of him "HAD HIS HEALING FOR HIM THE WHOLE TIME"! How cool a story. Anyhow, that gave me so much hope to move it or lose it! So i did. Move it that is. Did and does it hurt? Do we even need to ask? What I have done in the last 5 years to these two legs let alone this body to keep it is none the less a miricle. And thats it...
Yes I still have symptoms, and some pretty bad ones, yet some seem to have hidden away a bit. but my limb is stone cold and has been for years now. Oh well. Ive still got it.
Oh, also, another helpful tip. I promote healthy foot care first and foremost to all of us! Since our tempretures escape from our head and feet the most, they are usually affected the most though we tend to neglect the both of them.
I also do my families feet when I'm able to. (pedi's) I have a dremel, all the fixin's for home use foot care and then some. But, you want to make sure you are soaking your feet in EPSOM SALT. As often as possible. It relieves tired muscles, bone aches, cleans, disinfects, promotes circulation and is very cost effective. Check it out on a web hit for: RSD Puzzles, vero beach florida.
These doctors are amazing and have helped my locals in some situations to boot!
Well later for now,
keep movin with a friend,
traci

fishnchef
01-06-2009, 06:06 PM
I have been diagnosed with RSD in the left leg (knee, down). Simple injury at work when I hyperextended my left knee while running some stairs. Doctors couldn't figure out what was causing the pain in the back of the knee as I continued to work in some pain for 2 1/2 months. Exploratory surgery! Two times, after the first one did nothing. Waking from the second surgery was life-altering to say the least. I had never felt anything like it.

Indescribable pain.(I am a chef and am used to cuts and burns that hurt alot) Pain has taken on a new meaning. I have gone through the crutches, canes, PT, Lumbar Symp. Blocks, Fentanyl patches, Lyrica, contrast baths,needles in my affected limb, etc. Did I say life-altering? By the way,
I am 32 years old with two young children, one a 5 year old boy begging to run with Daddy.

Enough of that. This is a worker's comp. claim, so I do what they tell me to do. And I have. I saw an "independent"?????????medical doctor. He, in turn, gave me and the insurance company(who he works for) 22 pages of lies about my situation. Is this legal????? I guess so! I did what he said, as required by the system. :( On the second visit to the same doc (??????)he wrote in a report that I am "FINE, cut his benefits off and send him back to work". "It will help him Psychologically."

So I am cut off. What now? Time will tell. This is out of my hands now. I am going to continue pressing on as best I can, and run with my son and daughter in spirit. I will cheer them on. I am hoping that they don't remember the early times of this disease of moping and anger and feeling sorry. This is now in God's hands. He will do just fine with it.

I may have stirred a few things up here. I'll start by saying that, I live in the state of Kentucky. I have aquired an attorney and we are in the middle of a tug-of-war. I did not mean to sound as though I was bad mouthing the insurance adjuster. Even through all the junk that I have been through, I still tell doctors and my attorney to tell the adjuster hello and that I appreciate the assistance he gave me while I was allowed to speak with him. (once
hiring an attorney, you are no longer legally allowed to contact them) He was more than willing to speak with me on my terms. I educate myself to the situations I am in and I adapt to those situations as they arise. My adjuster went so far as to tell me what he would do in my shoes, and where to find information supporting those opinions.

I was also told that I needed a pulse rhizotomy and what led me to discussing
this option. According to my PM doctor, the SNB injections are given
in a series of up to 10 blocks. I was getting relief from them
anywhere from 1-7+ days. The injections were done once a week for
three weeks, skip two weeks, then again once a week for three. At
the beginning of the fifth, I was in some pretty serious pain
(nothing like the results of the earlier ones). They told before
beginning the series that if they stopped or lessened in the pain
relief that the injections would stop. I know that these injections
and their expectations are strictly based on indidual status. This,
like alot that we are dealing with, is case by case basis.

Pulse Rhizotomy is very similar to these injections. The difference
as I understand it, is that once the needle is in place at the nerve
chain ganglion, rather than injection medication, a wire is inserted
through the needle and radio waves are aimed to the same ganglion.
This deadens the nerve chain, "putting it to sleep", in hopes that as
it come back to full function "wakes up" it will reset and function
properly. The PM doctor told me that her success rate with this
varied from approximately 5% of people who leave feeling the same to
worse than before, 15% had worse pain upon leaving which slowly
became quite a bit better over the course of a week (once reaching
the "better" it remained better), 80% felt relief instantly upon
receiving the rhizotomy. She said that the procedure would usually
last, in whatever state it affected the patient, for one year at
which time they would repeat the rhizotomy.

The reason I don't know what the procedure could do is........
Worker's Comp denied the procedure then cut me off. An 80% success
risk sounds great to me. After all, I begged them to just get me
back to work. I have worked my way up from a dishwasher(starting
position)in a fast food joint, to the Executive Chef at many
restaurants and a lead position in one of the longest running 5-star
restaurants in the country. From the age of 13, I am a self
proclaimed workaholic. I would say that over my 17 years in the
rest. business, I average 80-90 hours per week. I love it. I just
wish they would ask anyone I have ever worked with or for. It would
be great to storm back into a kitchen. I have almost 2 years of a
bed, crutches and a cane to make up for. One more thing, I HAD
NEVER, IN THOSE SEVENTEEN PLUS YEARS, MISSED EVEN ONE DAY OF WORK. I have work ethic and I just wish someone would realize it.

->I guess the major issue I have with this whole ordeal is that the
insurance company has sent me to said doctor, he is an "independent"
examiner. For this "doctor" to come back to me with a report,
literally 22 pages of out and out lies regarding my injury. He
twisted my words or flat out omitted my words only to use his
instead. He started in the very first line of his report by stating
that I had said that I injured the opposite leg than the one I
injured. I won't get into all that he said, but when my PT read it he
was nearly as angry as I was. All the work he had been doing to help
me keep my RSD symptoms in somewhat control, he felt it was a slap in
the face. Two doctors who were treating me at the time were as well.
They filled me in on the Ind. Med. Examiner way of life. If your
insurance company gets to them first, they say what the ins. co.
wants to here. If the attorneys get there first guess what the
findings are. Neither is better in my opinion. I am an honest and
hardworking man and nothing can change that in me, no matter what
they do.

With the internet at our disposal you can find some pretty
interesting things about whomever you wish. I found that the expert
medical man that they were sending me to was a retired hand
surgeon/doctor. He was not in the interest of finding out what was
wrong with my knee, nor was he experienced in pain treatment. I
would have at least expected an orthopedist or PM experienced doc.
At least the "IME" that my lawyer is sending me to is a retired
PManagement doc. He spoke with obvious knowledge of the pain
aspect, he wasn't much more clear than the first on what to do about
the initial mechanical issue with my knee. I am interested to see
what his report has to say, I should have it this week.

One last thing, when I am able to retrieve the court dockets on the
insurance company's IME, and see that he has been involved in
overruling practicing doctors opinions in court(it is all out there
to find with a little snooping), and see how many time he has been
utilized as a tool of the insurance, it is rather sickening to me.

How is this legal. Do they not recall the Hypocratic oath that they
took? Not only do I feel that it is illegal practice, but I feel
that it is immoral. For the insurance company, and attorney the
same, to support such practice is where I say my issue lies. If
there is anything I can do about that I am open to suggestions. I am
not hopeful for resolve in this part of the game I am being forced to
play.

My medical and medicine and compensation has been stopped. I don't know exactly what will happen. The injury took place in April of 07. The
surgeries were in july and august. I didn't contact an attorney
until January of 08. The IME was in July of 08, the first one. He
recommended that I seek aquatic therapy and PT. I did both. I also
joined a local gym to try to work on some strengthening. My quads
will not strengthen. I saw the IME again in Oct. 08 He then said
that I was fine. There is nothing wrong with my knee. There is no
RSD, despite the ama guidelines. He says that I show no symptoms. I
have six other doctors that have documented that i do have ALL the
symptoms, or at least have had in the past. Here recently, with the
cold, the ones that had slacked off are coming back with a vengance.
I have a positive 3 phase bone scan, x rays showing osteopenia, MRI's
(three) showing progressive atrophy, and on and on and on. I do not
understand how this is legal. I think that is my main gripe through
this whole ordeal. Is there anyone I could complain to? I guess
not. As far a the video taping me, I have no knowledge of them doing
so. But, if they would I will put on a tracking ankle bracelet to
let them know where I am at all times. If they think that my life
the way I live it, is that of an average 32 year old man (let alone a
workaholic, verifiable by anyone I have EVER worked with), I would
love for them to video tape it and take it to the judge when I get
there. I am very uneasy about going into court. Not for anything
that I have to hide or am exagerating, but rather for fear that the
judge is somehow involved in this crazy game like the IME's and the
lawyers. I have a real hard time trusting anyone involved in this,
after all it is affecting the future of my children. A future that I
was well on my way to providing them and now it is all just withering
away. I will do the best I can and leave the rest in the hands of the
man up above. This has been great talking with you today and
tonight. I can tell that there are some knowledgable and forthright
people on this group and I look forward to talking with you all.
Oh and I still go to the gym on my own for now. The contract is up
end of January. I have no compensation so it will end too.


I look forward to chatting with some of you on the page here. After just a few days I can tell that this is going to help precicely when I need it. Thank you all for putting up with my rant. It feels good to punch this out on a keyboard. It made me feel better to get some things off my chest that I try to keep bottled up around family. Thanks J.

angelrsd
01-07-2009, 08:12 PM
hey fishnchef i live in nashville have had rsd for 11 yrs now how ya feel i dnt have workmans comp but had to go through 5 yrs of legal to get a tiny bit of money from the car accident that caused my rsd in 98. also i have 2 young children two girls 8 and 5 i know what you are feeling both my girls only know me as sick it really hasnt made their life any differnt except maybe a couiple more chores here and there. kids are pretty rezliant to sickness. fyi there is a great pain managment doc at vanderbilt in nashville that i see he used to work at the va he isa neurologist and pain managment very through very smart and very up to date on treatments he is on a couple boards for pain managment and rsd treatment ..
i ahve had every treatment know to man except ketamine .. i know have a morphine pump that has fentnly in it due to the fact that i am very deathly allergic to morphine .. i would keep the pt up.. for pt i use the kids try to stay as active as you can be .. i does help trust me.. im am gald that you found this site. so sorry that you are having a hard of things.. so sorry that you had suffer from this horrible diease


welcome

frogga
01-07-2009, 11:09 PM
Hey;

Most of this is copied from earlier on - but as it took me days to write I don't want to have to retype it!

Basically, if you can't be bothered to read this as it is very long and boring. I got RSD when I was 16 after injuring my right wrist and I am now 23. In that time it has spread full body and I have developed secondary generalised dystonia as well as HMS etc. I am now a quadriplegic and have occasional chest spasms, a lot of dystonic storms, have gone into status dystonicus several times. I have am in my third year at university and am studying psychology. I am in a wheelchair and have a live in 24 hour carer. I love animals and have 4 cats and a dog at home and unfortunately none at uni. I used to be very musical but now prefer hanging out with my friends or reading. I have an amazing boyfriend called James who is always there for me, is studying Chemical Engineering and is just generally awesome.

Take care and pain free hugs!

Rosie xxxxxxxxxxxxxx (a.k.a Frogga)

I have apparently had HMS (and apparently, according to my neurologist, dystonia) for most of my life but I wasn't really affected by it - my joints hurt if I did too much and I had pretty bad neck pain from the age of about 8. However, I still did sports, played for my county in hockey, was a grade 7 pianist, played the double bass, accordion, organ etc. I was predicted 12 A* at GCSE (highest grades you can get) and was on an academic scholarship to one of the best private boarding schools in the UK.

When I was 16, in January 2002, I was packing to go back to school when I slipped going up the stairs carrying a pile of ironing. One of my cats, Fred, was walking down the stairs and ran between my feet and I went flying, hit the top of the stairs and in a desperate bid to not drop the ironing I threw my right hand out. I landed on my right wrist and fell down the stairs.
Everything went black.

When I came too my arm hurt so much I thought it was going to kill me. It had swelled to three times its size and had gone black and purple and ice cold. I couldn't move my fingers, wrist or elbow and it just hurt SO much. When mum got back from visiting my grandma she took me to A and E (ER) and they thought I had broken my arm. The X-rays showed nothing, so the drs put me on some pain killers (dihydocodeine - similar to percocet I think) and sent me home with a collar and cuff and told me to rest it. I went back to school (crying in the car - the vibration from the car hurting so much) and tried to get on with my life. The alloydinia was so bad that I couldn't keep any material or clothes touching my arm, nor bed sheets, blankets, water or anything, wind made me cry. The pain moved up into my right shoulder and I had no movement from my right shoulder down and my right hand was clasped in a fist, my wrist twisted down and my arm held tight against my chest. Two weeks later I was still taking the tablets and getting no relief, no sleep and just generally going insane with pain. I went to back to A and E (ER) at my local cottage hospital close to school (Basically meaning they can take X rays and that’s it) and they told me I needed an emergency appt with my PCP in case it was a blood clot. Anyway - saw the GP (PCP) who recognised it as RSD. He increased my pain killers, referred me to pain management, orthopaedics, rheumatology and physiotherapy and told me that I had to move and touch my arm to get better. And so I started a long process of treatment. I saw the rheumatologist 2 weeks later who then said that it was the worst case of RSD he had ever seen and if I couldn't get my arm moving then it would be amputated. I got admitted to hospital and started inpatient physiotherapy, hydro etc.

Two weeks into treatment the RSD spread into my right leg. It had been hurting and I woke up to discover that my leg had gone black, ice cold and just generally horrible. I couldn't weight bear on it so I was given a crutch for my good arm and hopped in conjunction with the crutch. I was working really hard on physiotherapy and had got some movement in my fingers but the swelling still wasn't going down. I had turned into a drugged zombie as the doctors tried to keep my pain levels low enough to move but the only thing I could think was "this pain is going to kill me" and at times even breathing burnt so much I didn't know how I could live through another minute. The doctors decided to give me a pemidronate infusion to try and help with the pain but it didn’t work.

I got discharged from hospital in March 2002, still hopping with the crutch (they had tried to suggest a wheelchair but I told them I wasn't going to use one), still unable to do anything with my right arm. I was then spending a fortnight in hospital, a week at school and a week at home and then back to hospital. By now I had had to move into my house mistresses flat because I couldn't do stairs and my friends had to help me dress, wash etc. I was doing physiotherapy everyday, seeing the physiotherapists 3x a week, the OT's 3x a week and just trying to get some function back in my arm and leg.

This continued into the end of April, when a "friend" broke my left wrist by dropping something on it (by accident admittedly - but I’m still cross about it). The break was lightly plastered because of the RSD in my right side and I had to hop everywhere on my left leg because I couldn't use a crutch until I asked the physiotherapist for a gutter crutch. Two weeks later the cast had to be cut off my left arm because the RSD had moved into it - my left arm had swelled so much the circulation was cut off to my fingers and I still have the scars from the cast. I was readmitted to hospital again. I sat my GCSE's in hospital and continued with the physiotherapy. So, it was May, and I now couldn't walk, could barely use my arms or do anything. Then came several months of being hospitalised whilst I did physiotherapy, had OT and tried new drugs whilst the doctors tried to get control of my pain and get the circulation back into my limbs, reduce the alloydinia so I could bear having my body touching anything.

My dr’s finally decided to try a lumbar block as I just couldn't handle the pain any longer. It was my worst decision. I had it done and as soon as I came round from sedation my left leg had gone black. Whatever had happened whilst I was out - the RSD was now in my left leg so the RSD had gone into all limbs. The sensitivity had got to a point where I was in shorts and a t shirt and I couldn't sleep on a bed - I had to either sleep sitting up or lying across a bed with my arms and legs hanging off. I lived in fear of being touched and was always on my guard in case someone came too close to me.

I finally came out of hospital in October time and tried to start at a new sixth form college (high school) on a full time course. I came out of hospital just able to use crutches to drag myself around the house and feed myself and that was about it. I dropped out of the A level course by December because I was in so much pain and so exhausted I just couldn't cope - I was still doing all the physiotherapy, all the desensitisation etc and the fatigue was so awful I was lucky to manage 5 hours a week at college.

In November 2002 my physiotherapist put me in a wheelchair because I was so unsafe walking and because I had an infection in my legs. It was only going to be for a week or two. Four years on I am still in it. Whilst I was in the wheelchair I got dropped on the floor and broke my ankle causing dystonia in it and causing it to twist upside down and invert into a contracture. Unfortunately that was my "better" foot. From then on I started to get really bad muscle spasms, dystonic postures and contractures and found my muscles stopped responding how they should have.

I spent the rest of 2002 and 2003 in and out of hospital, trying new meds, new drs, new treatments, HBOT, blocks, infusions, physiotherapy, OT, hydro. I got assessed for and given new wheelchairs, started to have adaptations done to the house. I started having huge amounts of burning in my butt and spine.

In Spring 2003 mum and I realised I wasn't going to be "magically" cured so she started a new thing with me. We decided to choose one symptom which seriously destroyed my quality of life - hypersensitivity - and worked on it. Slowly it started to improve, though we would have argument after argument about it - I wasn't allowed out of the house unless I was wearing trousers, socks and a cardigan and slowly as I forced myself to confront stimuli I realised the sensitivity was improving. I got a new bed (a heated water bed) and mum used to get up and check that I hadn't removed all the covers etc.
(you can tell she's a military nurse). Anyway - the sensitivity started to be dealt with slowly.

As I live in a very quaint area of the UK it thus means there is no wheelchair accessible public transport - and as I am miles from my nearest town and at least a 30 minute drive from college I learnt to drive an adapted car and passed my test.

I started back at college in September 2003 and attempted full time (a mistake as I only managed about 30% attendance) and managed to complete the year with ACC at AS level. I went on to do another year at college (part time) and found a boyfriend who I pretty much lived with. He accepted me for who I was and what I could and couldn’t do (I could feed myself, dress myself with help, drive etc but still needed a wheelchair and help with quite a few things, cutting up food, getting in and out of bed, being lifted in and out of the bath etc).
Anyway - that year I got ACA in my exams. In this time my pain and dystonia had been getting worse and I had started getting twisting spasms and tremors and myoclonus. Although I had developed a better attitude towards the pain and realised that I had to get on with my life, and was still doing the physiotherapy etc I wasn't getting better, I was just getting worse. My feet were both totally inverted and my toes pointed backwards over my feet. I couldn't use my left hand at all because all my fingers had locked. I had specific splints for stretching my joints out but they didn’t work. I got engaged to Jay and then broke up with him, realising that firstly I didn’t want this level of commitment and secondly it wasn't fair on him to spend his life with someone needing to be looked after all the time.

I got referred to a neurologist in October 2005 after the spasms dislocated both my thumbs. This had been happening regularly and had ended up with spasms where I had dislocated thumbs, shoulders, knees etc. But my thumbs were the biggest problem as the spasms would pull them out of joint and then backwards over my hands - which was VERY painful and annoying! He didn't understand what was going on so ordered an EMG to be done as he felt that it wasn't possible for RSD to get as bad as mine was. Meanwhile my pain management dr had decided to put me on ketamine because I was still not sleeping for more than 3 hours a night and even though I could now cope with clothes I still couldn't cope with anyone touching my skin etc. The ketamine trial was good and worked better than the high doses of fentanyl and morphine I had been on and so I switched.

A week later I got bitten by my dog and jumped. I couldn’t open my mouth or hold my head up. Apparently the jump had caused me to develop orimandible dystonia. To avoid having to have tube feeds I had to be on liquidised food to try and eat it, though it also had to be thick enough to swallow as I also had problems with that. I was placed in a full spine/ neck brace to hold my head up and more tests continued as to why I had lost the use of it. Orthotics made me a special brace that I used during the day in conjunction with the head rest on my wheelchair to keep my head upright and to allow me to drive.

In March I had the EMG. Straight after those I lost almost the entire use of my arms (before I hadn't been able to use my fingers or thumbs, now I couldn’t move my elbows either or my shoulders). Loads more tests etc and they discovered I had severe dystonia (which I have botox for). However, in 2006 I stayed in college, managed full time and managed to get 4 A's - the highest grades you can get. I got a place at a prestigious college to study psychology.

So now (in 2007), on the 5th anniversary of me having RSD where am I? I am still in severe constant pain; I haven't slept through a night in 5 years. I take ketaime, dihydrocodeine, baclofen, diazipam, benzhexol, ibuprofen, paracetemol and diclofenac. I am living away from home at university most of the time. I have live in 24 hour carers who feed me, dress me, lift me, etc. I use an electric wheelchair or am pushed around in my manual. My hands don't work and I have to have someone with me to do anything at all. I am waiting to see a neurosurgeon about possible having a DBS implanted. Both of my feet are inverted and twist over each other whilst my toes are twisted backwards, my hips have twisted too. My periods stopped for several years and have now re started very sporadically. I still can't hold my head up and though my jaw has improved I still can't eat very solid food. I still aspirate frequently and have difficulty with swallowing. My elbows still don't work and my shoulders aren’t much better. The botox has helped my right hand a bit so I can operate my electric wheelchair. I have RSD full body and everything hurts, burns, stabs, screams. I can now wear clothes (but not shoes) but everything that touches my skin still feels like it is burning holes through it.

Update: Jan 2009. I can’t believe I have now had RSD for 7 years.. it’s so scary. The pain has really spread into my back and it is really burning, in fact my whole body is. I’ve started getting lots of full body spasms and my jaw keeps locking and then unlocking. After a really awful dystonic storm my arms went from being locked out straight to bending up and across my chest so I was totally unable to operate my wheelchair, type or drive. I got my new wheelchair accessible van which is awesome – it’s a Chrysler Grand Voyager and means I can go out. I am in my third year at university and am now on placement working as a mental health officer at Wiltshire county council – I really enjoy the work and they are really good about giving me the opportunity to work from home and giving me time off when I’m not well etc. I have awful dystonic storms 3 or 4 times a week, especially at night, and I also faint from pain a couple of times a week. My friends know I hate hospitals so they deal with almost everything (along with my live in carers). I ended up going into status dystonicus in December 2008 and ended up in hospital. My arms ended up moving from up across my chest (near my neck) to down under my breasts. The pressure they put on my chest is agony and bruises both my chest and arms. I am also having huge jaw problems with eating. My chest has started to go into spasm and that makes my lips go blue and my face go grey when it happens. The dystonia also affects my face and eyes which can be embarrassing.. I am so blessed to have the most amazing friends anyone can have and also an awesome boyfriend who is there for me every step of the way. He has been there when I’ve been fitting, he doesn’t mind feeding or dressing me or taking me to the toilet and still thinks that he’s lucky that I’ll date him!! ROFLMAO! He is studying chemical engineering and is called James and is gorgeous and just generally lovely. We’ve been together for the last 14 months and he has practically moved in.

I still take loads of meds and my pain is still not under control, I’m on oramorph, ketamine, dihydrocodeine, tramadol, baclofen, diazepam, ibuprofen, paraceptemol and domperidone. It still feels like burning, stabbing, screaming, exploding, deep aching, throbbing, whipping, lashing, clicking, all consuming pain.

It’s strange... the one thing I find is that the more the RSD and dystonia destroy my body the stronger it makes me against it. Sometimes it feels like the pain is going to destroy me but yet.. I think I’ve made it through agony and more agony than people that don’t have RSD can possibly ever understand, where nothing can control the pain and that’s given me the strength to keep fighting this thing, even when things get to a point when I feel I’m going to give up. Sometimes I get really down with this, I feel that it’s not fair and it’s destroyed my life… and that it’s not fair that my “normal” friends can go out on their own, live on their own, have freedom let alone feed themselves, stand up and walk or be pain free.. I sometimes wander what it would be like to be pain free, to walk outside in the sun holding James (my boyfriend’s) hand, or to be able to go out dancing with my friends. I wish I could concentrate better on my work as the pain just destroys any concentration I could possibly have! Does anyone else ever wander what their life would be like if they hadn’t got RSD? I mean, I discovered several months ago that my neurologist thinks I would have got the dystonia anyway – but at least that would have been less painful! And I think less debilitating than the two disorders together (as well as all the other stuff). But, would I have made it to medical school? Would I have qualified now, like some of my friends? Maybe, but… Would I be the person that I have become? Somehow, I don’t think so.

Much love and pain free hugs to you all

Rosie xxxxxx

djheadley
01-28-2009, 12:01 AM
I just found this forum tonight and boy, do I need help. I got RSD in 1992 after tripping over a step in a sidewalk. Luckily I was diagnosed in a few weeks and was even in remission for about 6 months, then fell in my yard and activated it again. My primary RSD site is my left ankle and foot but about 1 1/2 weeks ago I tripped going up the steps from my porch (I guess I'm really graceful :thud: ).

Anyway, I cracked a toe on my right foot and now I'm getting RSD symptoms there. My new Dr. know a lot about RSD and she said to keep her informed about what is happening.

I guess I'm just going into depression (more than usual) because I know what is going on.

I'm glad I found y'all.

djheadley

MominPainRSD
01-28-2009, 10:20 AM
I just found this forum tonight and boy, do I need help. I got RSD in 1992 after tripping over a step in a sidewalk. Luckily I was diagnosed in a few weeks and was even in remission for about 6 months, then fell in my yard and activated it again. My primary RSD site is my left ankle and foot but about 1 1/2 weeks ago I tripped going up the steps from my porch (I guess I'm really graceful :thud: ).

Anyway, I cracked a toe on my right foot and now I'm getting RSD symptoms there. My new Dr. know a lot about RSD and she said to keep her informed about what is happening.

I guess I'm just going into depression (more than usual) because I know what is going on.

I'm glad I found y'all.

djheadley

Welcome!!! I, too, am so glad you found us.....but am sorry for you that you need us. This is an awesome forum with many knowledgeable, caring people. I think you'll find that you have found a second family here....we're all related in the aspect that we are familiar with the pain, fear, suffering, and depression of having an incurable disease.

I am glad that your doctor seems to know about RSD. So many of them out there have never even heard of it, much less treated it. Are you currently on any meds that are helping to calm down the sympathetic nervous system or for pain???

I, too, am very accident prone. I've fallen down my stairs more times than I can count and slipped in the tub last spring and broke some ribs. Go figure that none of those accidents caused my RSD......it was "simple" ankle surgery I had in December. My RSD has already spread to my other foot (in less than two months) despite no additional injury, so it can spread on its own without any precipitating factor.

I have found a WEALTH of information on this forum and respect the member's personal experiences living with RSD as much as the other information I have found on the internet. I think both have their place in my decisions on how to proceed with my treatment.

Under the top section, you'll find a "new thread" button. You can post a new thread asking any question you may have or "search" the forum for any topic you might be curious about that have already been posted. We are all here for you and welcome your questions, concerns, and input!! Please take care!!! Hope to hear from you soon!!!

salten
02-03-2009, 02:24 AM
Hi everyone,
I'm Jenny and I'm here because my husband was injured on Jan 8 of this year by an accidental gunshot wound. The bullet seems to have hit his sciatic nerve up high in the leg and he has been experiencing severe pain in his foot ever since. This morning we finally saw a neurologist who diagnosed causalgia. I had never heard of RSD or CRPS until this morning and I've been on the internet all day reading stories like yours. My gosh, I am amazed that some of you have been dealing with this for decades! It has been just less than a month for us and it's already seemed an eternity.

This accident happened one day before my husband's last day of work at his full time job, which he was leaving to pursue is dream of joining me full time on our small family farm. He has been on crutches ever since and the pain is so bad when he stands up that he can only be out of bed for a few minutes. I have been caring for all the livestock and our two young kids who are homeschooled in addition to all the housework, taxes, bills, etc.

He has just started gabapentin and we have an appt. with the pain clinic on Wednesday. Is there anyone here from the Albuquerque area who can recommend a Dr?

I am terrified not just by the pain component of this but also the depression. He was already suffering from bad depression before this happened. We were hoping that getting him home on the farm full time would help this. Now he is facing the possibility of never ending chronic pain and doctor visits, which he hates, and not being able to do anything on the farm, not to mention the financial stress this will cause.

One good thing is that he has been getting regular massage therapy since the first week of the accident. He is trying to bear weight on the foot and the massage therapist is able to do a lot of good stretches and work out the cramping he gets in his calf.

I'm glad to have found you. I'll start by asking if you have any advice for our pain clinic appointment on Wednesday.

And please know that I believe you when you say how painful this is!

Thanks,
Jenny

ali12
02-03-2009, 08:57 AM
Hello and Welcome to Neurotalk Jenny - I am SO glad you found us, everyone here is so nice and friendly and I am sure will be more than happy to help you in anyway they possibly can!!

I'm so sorry to hear that your husband has been diagnosed with RSD/CRPS:hug:! I have RSD in my left leg and right arm, I developed it when I was 12 years old and am now 14!!

The "lucky" thing for your husband is that he has been diagnosed VERY quickly - unfortunately, it can take a lot longer for some people to be diagnosed and some people are left to suffer in excrutiating pain for years without a diagnosis and by that time, it is too late to do anything for them! It is extremely important that RSD is caught and treated very quickly - Doctors say that the best chance of reaching remission is if the RSD is caught within 3 months so please take that to heart!!

I wish you and your husband the very best of luck with his upcoming appointment and really hope you can get some much needed help!:hug: Please don't be afraid to ask your husbands doctor ANY questions that you have ... it is really important that you know what to expect and don't ever be afraid to ask anything, no question is a bad one!! Also, don't let your husbands doctor do anything that you aren't happy with - it is REALLY important that your husband makes his mind up as to whether he wants to go ahead with a certain procedure and no-one can force him into doing anything!!

Please make sure your husband moves his foot and leg - I KNOW it hurts a lot as I have been there but it is probably the one thing that will help in the long-run! I have another neurological condition called Dystonia on top of the RSD which means I can't move my leg at all and it makes any Physical Therapy extremely difficult!! Also, please tell your husband to touch his foot and leg so that it doesn't become too hypersensitive - if it is already hypersensitive, start by touching it really gently with a nice, soft material and then build it up as and when he feels as though he can tolerate it better!!

As for the Depression, unfortunately a lot of people with RSD suffer from it as they are frustrated that they can't do what they want to do etc etc. I was VERY depressed a few months ago and felt like life wasn't worth living and it was extremely difficult to try and overcome it!!!! I see a Psychologist and she has helped me quite a lot ... that's not to say I still don't feel depressed and angry, I do but I have "learnt" to try and deal with it better through exercises that she has given me!!

If you ever need someone to talk to, please know that I am here for you both!

Please keep us all updated when you can and im sending your hubby many pain-free hugs!!

Alison.

Hi everyone,
I'm Jenny and I'm here because my husband was injured on Jan 8 of this year by an accidental gunshot wound. The bullet seems to have hit his sciatic nerve up high in the leg and he has been experiencing severe pain in his foot ever since. This morning we finally saw a neurologist who diagnosed causalgia. I had never heard of RSD or CRPS until this morning and I've been on the internet all day reading stories like yours. My gosh, I am amazed that some of you have been dealing with this for decades! It has been just less than a month for us and it's already seemed an eternity.

This accident happened one day before my husband's last day of work at his full time job, which he was leaving to pursue is dream of joining me full time on our small family farm. He has been on crutches ever since and the pain is so bad when he stands up that he can only be out of bed for a few minutes. I have been caring for all the livestock and our two young kids who are homeschooled in addition to all the housework, taxes, bills, etc.

He has just started gabapentin and we have an appt. with the pain clinic on Wednesday. Is there anyone here from the Albuquerque area who can recommend a Dr?

I am terrified not just by the pain component of this but also the depression. He was already suffering from bad depression before this happened. We were hoping that getting him home on the farm full time would help this. Now he is facing the possibility of never ending chronic pain and doctor visits, which he hates, and not being able to do anything on the farm, not to mention the financial stress this will cause.

One good thing is that he has been getting regular massage therapy since the first week of the accident. He is trying to bear weight on the foot and the massage therapist is able to do a lot of good stretches and work out the cramping he gets in his calf.

I'm glad to have found you. I'll start by asking if you have any advice for our pain clinic appointment on Wednesday.

And please know that I believe you when you say how painful this is!

Thanks,
Jenny

MominPainRSD
02-03-2009, 10:32 AM
Hi everyone,
I'm Jenny and I'm here because my husband was injured on Jan 8 of this year by an accidental gunshot wound. The bullet seems to have hit his sciatic nerve up high in the leg and he has been experiencing severe pain in his foot ever since. This morning we finally saw a neurologist who diagnosed causalgia. I had never heard of RSD or CRPS until this morning and I've been on the internet all day reading stories like yours. My gosh, I am amazed that some of you have been dealing with this for decades! It has been just less than a month for us and it's already seemed an eternity.

This accident happened one day before my husband's last day of work at his full time job, which he was leaving to pursue is dream of joining me full time on our small family farm. He has been on crutches ever since and the pain is so bad when he stands up that he can only be out of bed for a few minutes. I have been caring for all the livestock and our two young kids who are homeschooled in addition to all the housework, taxes, bills, etc.

He has just started gabapentin and we have an appt. with the pain clinic on Wednesday. Is there anyone here from the Albuquerque area who can recommend a Dr?

I am terrified not just by the pain component of this but also the depression. He was already suffering from bad depression before this happened. We were hoping that getting him home on the farm full time would help this. Now he is facing the possibility of never ending chronic pain and doctor visits, which he hates, and not being able to do anything on the farm, not to mention the financial stress this will cause.

One good thing is that he has been getting regular massage therapy since the first week of the accident. He is trying to bear weight on the foot and the massage therapist is able to do a lot of good stretches and work out the cramping he gets in his calf.

I'm glad to have found you. I'll start by asking if you have any advice for our pain clinic appointment on Wednesday.

And please know that I believe you when you say how painful this is!

Thanks,
Jenny

Oh Jenny,
I am so very sorry to hear of your husband's accident. It is VERY good that he has been diagnosed so quickly, and I think it is an extremely encouraging sign that he is able to put weight on the foot so soon and is already working with a PT to stretch the leg.

I developed RSD in my left ankle after surgery on Dec. 3 '08, so I haven't had it very long myself. I have already had a series of sympathetic nerve blocks and the swelling is under control. I do have nerve damage in my left foot from the surgery, and the RSD has spread to my other foot, but I am not experiencing as much pain in the right foot as the left. I credit this to early treatment, just as your husband is getting. I can walk slowly, without a limp, and am able to get most of my chores done.....maybe not perfectly like I used to......but well enough.

Ali is exactly right about desensitizing the foot and leg. He needs to remember that even though it HURTS like fire (or glass or whatever) is being rubbed into him to touch it, that it is just the nerves misfiring and sending false signals to his brain. The more quickly he can desensitize it to get used to being touched and used, the more mobility he will retain in the long run and the more quickly this can happen.

Regarding the depression, he absolutely needs to be put on a good antidepressant if he's not already on one. First, some antidepressants are proven useful in treating depression AND pain in RSD. Second, lingering depression will only further discourage him from doing his PT and moving on with his new life. Chronic pain and loss of function IS depressing.....he didn't choose this nor did he do anything wrong to get RSD.......it just happened.......it is not his fault.

Every one of us here has had to adjust to the various changes that RSD has imposed upon us. It is so good that you found this forum, as there are many caring, supportive, and knowledgeable people here to offer support or guidance. Better still, this is a safe place where you can get a lot of understanding and compassion.....we all know how this feels.

Please feel free to post any new questions on the general forum that you may have. It is so wonderful that he has you to be so supportive of him. You BOTH need support to adjust to this diagnosis, especially since you have had to take over so many of the other responsibilities. Try to remember that you guys WILL be ok. It may alter how you go forward in your immediate life, but many people with RSD and on this forum still manage to lead productive, happy lives......perhaps just in a slightly different way than planned.

Try not to look too far into the future, but take it one day at a time. Our greatest hope is that your husband responds quickly and positively to treatment. Please remember to take care of yourself as well. You must be forgiving of yourself and your personal limitations right now......accept help from people that offer (is there family around you??).....get as much rest as you can in between tasks.....you have to regroup your priorities realistically and remember that you're just one person.....you can't do everything perfectly as though you were two.

Regarding specialists......there really are none in the area of RSD, although there may be doctors that are familiar with treating it. A good Pain Doc that has been successful treating RSD in the past is critical. If yours isn't, be willing to travel some to get one that is. You already mentioned that he has seen a neurologist and a PT. It sounds like you guys are doing all the right things! Be careful not to read too far into the disease and "project" all of that happening to him in the future. That is overwhelming and depressing. Simply accepting where you are now is struggle enough.

Please keep us posted on how his visit tomorrow goes. Ask any questions you want to.....spend some time reading other posts on this forum. You can do a "search" on a specific topic you may be interested in (option available on the blue bar at the top). We are all here for you!!! Hope to hear from you soon!

wildberry2277
02-10-2009, 08:31 PM
Hello everyone… My name is Jacquelina… I have RSD and TOS…. I was diagnosed around 2 years ago for the TOS… I was in constant pain with the TOS for almost 7 years.. Only took them long enough to diagnosis it… Following that I started having swelling and skin color changed., flowed by sweating profusely…. 3 months after my TOS dx came the RSD one.. I was dx with Bilateral TOS and RSD on the right side…

I cant tell which symptoms belong to what condition … The worst one or at least as of lately:

-I am having swelling that starts from elbow up to the shoulder… Like 4x normal size.. And the bottom half of my arm from the elbow down is just white..
-swelling
-hot all the time/ with just the tips of my finger swelling.. And very cold..
-skin hot to the touch
-Molted skin changes
-Depression
-Trouble holding and writing things
-Pain levels in the high 9-10 for the last month..
-Pain from the surgical site
-Under neither my armpit is so sensitive I can barley stand to put deodorant on … and most days I don’t because of pain..
-this is one of the most painful parts…
-I will have episodes where my hand will cramp up so tight I can get it on done..
-Fire feeling in my arm of course…
-Intense burning numb pain … sometimes it feels like I am sticking my hands in glass….

Those are the symptoms I can think of right now… As for things I have tried.. I have had 4 blocks with relief for only a few hours… I have had a right rib resection with removal of part of the scalene muscle.. No relife from that what so ever.. Actually made things worst for me I think…The surgery its self was very painful and with the high tolerance to meds that didn’t help the pain at all.. I have had 3 keatmine injections… I have tried 8 different types of physical therapy and have swore to my pain doctor I will never have PT done again.. My god is it painful and ineffective… NEVER EVER AGAIN WITH THAT LOL… unless I go forth with the possible 2 rib resection on the other side then I will do pt for that part I guess..

Right now I am currently on the following meds::
Percocet 6 daily
Opana 60 mg
Topmax
Neroutin 1600 mgs a day
Hydroxine
Levythorixine
Flexiral
Allergy meds
Volatar gel
Cymbalta
Blood pressure meds Metropol
And vitamins… Milk thistle, vitamin E, calcium, flax seed, olive leaf, lysine, Fish oil, and some other ones… *** but may I suggest that all of us start taking the milk thistle.. It is great great great for your liver.. And with the medications we are all on we for sure could use something to help clear that out… I don’t know how exactly it works but my doc suggested it..

MominPainRSD
02-10-2009, 08:48 PM
Wow Jacquelina, you are on a LOT of meds.....some in the same family. I am SO sorry for all of your pain and problems. It sounds like things have just gone from bad to worse with you. Do they suspect that the TOS (which I had to look up and am pretty sure you're not referencing "terms of service"!!) caused the RSD??? Or the surgeries you've had to try to repair it??

Have you tried a SCS??? The key to proper PT in an RSD patient is getting good pain relief BEFORE attempting PT so that you can improve your ROM and strength. You can't get a limb moving if you're guarding it from the intense pain. Was your PT experienced working with RSD??? Otherwise, you're just going to exacerbate the RSD (which I should call CRPS, but I'm lazy and RSD only requires capping and typing with my left hand!!).

Have you been to the sister forum on Neurotalk for TOS??? I think that all of your symptoms could be the RSD.....they all match what many of us experience here......I am just so sorry that you're so disabled by your pain/condition.

Thank you so much for telling us your story (to us newbies who may not have known you before). Please keep in touch and posted on your progress. I hope that they will find a different medicinal approach that can help you regain more of your life. Best wishes!! Please post any time in the general RSD forum about anything that may be of concern to you. We are all here to help each other out.

sue barbour
02-13-2009, 10:03 AM
I feel for you guys but please tell me how this got so far out of hand ...Here is my story ..had shoulder surgery on nov.18 09 never got rid of the pain on cut they made on top of it first doc kept telling me its find this is normal,so with no help from him after giving me sleeping pills,pain pills,creams,and any thing his PA could find I went to a new doc it was hard to find one that wasnt in with the same company but when I did she took up look at me and sent me to her pain management,got my first block and got some releaf go for 2 more in the next 2 weeks I am hoping for a cure with the shotsBut after reading the hell you guys have been in for most of your life I'm not so sure,Is it because it was not coute in time or what,now I'm not sure if I should get the block or not someone please tell me how long you had this before a doc did anything for your pain......?????

ali12
02-13-2009, 11:21 AM
Hello Sue and Welcome to NeuroTalk - you will meet many great people here who will be more than happy to help you in any way they possibly can!!

I'm so sorry to hear about everything that you have been through and really hope you get some much-needed pain relief real soon!!:hug: Please don't EVER give up hope - there is always hope and it seems as though you are still at the begginning of dealing with this awful disease? Doctors usually say that RSD is best caught and diagnosed within 3 months as that is the best chance of getting your RSD into remission! Unfortunately, there isn't any cure for RSD at the moment however there IS medications to try and help reduce the pain and other symptoms!!

I have RSD in my left leg and right arm - I developed it when I was 12 years old and am now 14. It took me 4 and a half months to get diagnosed and treated which was pretty "good" compared to some as some people are left to suffer in awful pain for years on end! Before I was diagnosed, I was having Physical Therapy although it wasn't helping at all as the PT's didn't know anything about RSD and thought that I was just faking the problems for attention - why would I do that?!?!?!

When I was diagnosed with RSD, my Pain Management Doctor immediately did a Guanethidine Nerve Block and it didn't help me at all and I was left wheelchair bound for over a year!:eek: Unfortunately, when my Doctor did the nerve block, he didn't realise that you should NEVER inject directly into an RSD limb unless you absolutely have to and it was only when the complications started happening that my mum found an article on the internet about it so by that time, it was too late unfortunately!

MANY people have had relief from the nerve blocks though and it is different for everyone - no two people are the same when dealing with this illness unfortunately so it really is a matter of trial and error! I would suggest that you do a lot of research before going ahead with anything though and to weigh up the benefits and side effects and speak to people that have had that paticular procedure done before!

If you need anything, please know that I am here for you because I DO understand what you're going through and how painful and frustrating it is!! I hope you get some much-needed pain relief real soon and am keeping you in my thoughts and prayers!!

Alison.

I feel for you guys but please tell me how this got so far out of hand ...Here is my story ..had shoulder surgery on nov.18 09 never got rid of the pain on cut they made on top of it first doc kept telling me its find this is normal,so with no help from him after giving me sleeping pills,pain pills,creams,and any thing his PA could find I went to a new doc it was hard to find one that wasnt in with the same company but when I did she took up look at me and sent me to her pain management,got my first block and got some releaf go for 2 more in the next 2 weeks I am hoping for a cure with the shotsBut after reading the hell you guys have been in for most of your life I'm not so sure,Is it because it was not coute in time or what,now I'm not sure if I should get the block or not someone please tell me how long you had this before a doc did anything for your pain......?????

Dubious
02-13-2009, 06:55 PM
I feel for you guys but please tell me how this got so far out of hand ...Here is my story ..had shoulder surgery on nov.18 09 never got rid of the pain on cut they made on top of it first doc kept telling me its find this is normal,so with no help from him after giving me sleeping pills,pain pills,creams,and any thing his PA could find I went to a new doc it was hard to find one that wasnt in with the same company but when I did she took up look at me and sent me to her pain management,got my first block and got some releaf go for 2 more in the next 2 weeks I am hoping for a cure with the shotsBut after reading the hell you guys have been in for most of your life I'm not so sure,Is it because it was not coute in time or what,now I'm not sure if I should get the block or not someone please tell me how long you had this before a doc did anything for your pain......?????

[F]Hi Sue, I had shoulder arthroscopy at the end of April last year. Second day after surgery, my arm, hand and shoulder be came very swollen and unbelievably painful. After 4 weeks of the madness, I self-referred for an EMG/NCV which was positive and the neuro told me to go to pain management within a week or two if not better. I then self-referred to pain managment at 6 weeks post and had my 1st stellate block the next day. I have had 5 now, mostly because PT aggravates my causalgia symptoms but at least the blocks work temporarily for me, if nothing else. I have fortunately not returned to the awfull, intensity of pain that I had pre-blocks. I think that if they seem to help, you should continue until you feel they stop helping. That's where I'm at too.[/FONT]

Alessea
02-13-2009, 08:29 PM
Hi there, I'd just like to introduce myself...I'm already friends with Ali ;)

I am not going to write my whole story just now, maybe I will one day-maybe not. You all know how it is already anyway.

I'm 23 years old and I live in Christchurch, New Zealand, when I'm not studying in Dunedin at Otago University.

I've had CRPS/RSD (what ever you call it doesn't make it any easier) in my right leg and foot since March 2006 but was only diagnosed to my face with it in May last year. I missed one step and landed hard on the next one, I didn't even fall over but I managed to mess my hip quite badly and also my foot.

Took a few months to get a doctor to believe that I had hurt my hip even though I could barely walk and finally when we did find someone we discovered that I had done so much damage I needed pretty major surgery to try fix it.

I've had a series of accidents since then mostly involving complex concussions (and one scaphoid fracture), I do not mix well with stairs and my balance and centre of gravity are shocking. One fall even took me out of a whole 8 months of uni.
I had the surgery on my hip which has been amazing as now I can walk quite well again as before the surgery I could barely walk at all. At that time my surgeon was confident that all the problems with my foot were 'my body's way of dealing with the pain in my hip' and that surgery would fix everything-how I wish that was true-I often think he was trying to pretend to himself as much as me because he knew.
I have continuing problems with the head injuries too but have never given up on my dream.

I got through a very competitive pre-med year getting grades good enough for physio (PT) school (all the health science professional wanna be's do a combined first year) so now I'm a couple of weeks away from starting my 3nd year, having passed all my 2nd year exams, not really believing that I have made it this far.

I take the good with the bad, try and focus on the good as much as I can and I love helping people! Things don't always go to plan and I get pretty stressed sometimes and my grades are not as good as I wished they should be. But I am learning slowly that its an achievement in itself to be where I am and passing at all and above all to never give up on something you truly want with all your heart.

I've just spent the summer doing an intense hydrotherapy program (been at the pool almost every day) and have made a lot of progress in terms of strength, endurance and function. I'm still in pain but I have been hardened some what to now be able to do quite a lot despite the pain. I still have bad days but I have a close network of friends who are always there to pick me up and get me back on track.

Looking forward to meeting you all.
Felicia

Crystal Dawn
02-17-2009, 06:21 PM
First, I would like to thank everybody else for posting their stories. I've read lots of articles about CRPS, but this forum is much more informative.

About 2.5 years ago, I gave a blood sample at work. Unlike many other people posting in this forum, I did not feel a nerve being hit and the blood sampling was uneventful. However, within 2 hours, my whole right arm (from the elbow down) ached painfully. Later, I developed swelling at the sight of venipuncture and a large bruise about 2 inches from the site. Within a week, I had numbness, tingling, and weakness in my right arm. Since then, I've had cold sensitivity, temperature changes, mild color changes, occasional burning/electric pain, and mild swelling.

Fast forward to 2 years later, and I wake up one day to notice that my right shoulder has dropped in elevation, so that it sits significantly lower than my left. After a few trips to the doctors/neurologist and several MRIs, I am told that the muscles in my shoulder and back are 'dystonic' (essentially the nerves are telling them to constantly contract).

I am getting botox for my back and shoulder muscles, but am no longer on any treatment for my neuropathy (or possible CRPS). It is usually fairly mild, however I do have flair-ups which make work (i'm a molecular biologist) very hard. I am thinking of seeing a CRPS specialist, because not having a diagnosis while my symptoms seem to grow is very frustrating.

angelrsd
02-17-2009, 08:51 PM
welcome to all
my name is carrie i have had rsd for 11 yrs i am 27 years old and have full body rsd organ involment . welcome to our forum i hope that you guys jump right and ask any quetions that you guys have there are alot of great people here and alot of information goin around. i am so sorry that you any of us are
goin through this

hope we talk more
carrie

just_jan
02-27-2009, 11:47 AM
I was diagnosed 4 weeks ago with "probable" CRPS. I had a rotator cuff repair in July 08, 4 months after a work injury. After months of physical therapy, my pain kept increasing. My range of motion was also worse than before the surgery. I developed swelling in the collar bone area and the side of my neck along with radiating pain from my ear down to my elbow, a creepy-crawly feeling across the back of my shoulder and tingling in the fingers. My surgeon said he was not concerned about my pain that he was more concerned with my function(which I thought was odd because I went to him for pain...my function was not very limited before the surgery). At the urging of PT he sent me for a cervical mri and an emg. That showed slight herniation of c4c5 and that I had carpal tunnel and cubital tunnel syndrome so he sent me to a pain specialist for epidural injections. The pain specialist did not think the disc were significant enough to cause my pain and symptoms, examined me thoroughly and said he thought I may have CRPS due to my blotchy skin and weird symtoms. He started me on neurontin and refered me to a hand specialist for my hand symtoms. The hand specialist said he didn't think I had CRPS and gave me a cortisone injection for carpal tunnel. That was 4 days ago. Today I have a deep stabbing, burning type pain in the palm of my hand and can barely bend my fingers. Is this normal after a cortsone injection? Also my WC adjuster called a little while ago and said that I needed to go for an IME before he would approve any more treatments. He is setting up the appointment now. I guess the fun is just beginning. I don't want this to be CRPS. I am very greatful that someone is finally addressing my pain and hope that WC does not impeed any progress I may make with the PM Dr. Sorry for rambling I am just tired and frustrated.

AngeLsLuv
03-17-2009, 11:20 PM
Hi Everyone,

Well let's see... Back in 1995 I was in a severe car accident where I went 1/2 way through the windshield.. I broke my left shoulder and collar bone, and my right collar bone and spiral broke my right arm.. The orthopod was paranoid about doing surgery to repair the spiral break (a rod and two pins) because if he "slipped" one way my arm would have been paralyzed, and if he slipped the other way, I would have bled to death before they could do anything.. Nice idea to have a doctor in charge that was so insecure about his skills.. So, after this, afew weeks went by and the RSD began in the bad arm.. Non-stop going to one doctor after another about my symptoms, I was finally diagnosed 4 years later.. At this point, the RSD has spread to both arms, down my right side and both legs, on top of having diabetic Poly Neuropothy...Being that there is no doctor in my area that I can find that has a clue about RSD, I feel like I'm just stuck with it... Years ago I had made an appointment in Philia to see Doctor Swartzman but needed to cancel it.. I'm now in search of a doctor that actually knows what RSD is and can treat it in the Scranton/Wilkes-Barre area of Rennsylvania... Anyway, Just wanted to say "Hi" to Everyone and hope you are all happy and full of hope for a cure or at least good enough treatment that you are all well :D

kevindonaho
03-25-2009, 02:44 PM
Hi i am 31 yo from oklahoma. I have had rsd for about 6 years in my hand wrist and arm. it was a result from an work injury. I had to have major reconstructive surgery on my wrist as a result i developed rsd. I currently take lyrica, gabitril zanaflex, celebrex, tylox, kadian, cymbalta, trazodone and a cream with ketamin and some other stuff in it. well yall have a good day

klb1553
03-25-2009, 06:15 PM
I just wrote a brief intro on the general site. This seems to be difficult for me.

I was diagnosed with RSD in June, 2009 after 5 months of pain and terror. I initially thought I had injured my right knee while working out. That was in February. In March I visited my internist who wrote orders for PT and gave me names of several physical therapists. I guess I had about 5 sessions and continued to get progressively worse. By this time I was using a cane and experiencing pain and loss of ROM in both knees. I got a referral to an orthopod who found nothing on the X-rays, gave me an NSAID, and a shot of steriod. I was barely able to walk to the car and wasn't able to drive again until September, 2009. I saw the same doc for a follow up and although he seemed to dismiss me as a lunatic whose complaints were just somatic in nature, I somehow persuaded him to order an MRI of both knees. The MRI was essetially normal with a bit of chondromalacia and some cysts. The guy was now truly convinced that there was nothing physically wrong with me. I continued to get worse. My knees felt like they were being eaten with acid from the inside out. The more pain I experienced, the less I moved. My muscles began to atrophy in a relatively short period of time. I once again I visited my internist (someone I have seen for years and who knows me to be one who is rarely ill). She took me seriously and after seeing many specialists, undergoing a plethora of tests and a hospitalization I was diagnosed with RSD. I was now almost bedridden and needed help with basic things. With the help of friends, family, and some excellent health care givers (excluding the orthopod), I am once again functional. I am by no means pain free and I have flare ups. The flare ups do however seem to be less in frequency and duration.

I am thrilled to have found this site. I still sometimes can't believe this has happened to me and mourn my limitations. But I am truly thankful for the functionality I have regained and try not to take anything for granted. I hope I can find as well as provide some comfort.

To health.

butterflyLisa
03-27-2009, 09:23 AM
Hey;

Most of this is copied from earlier on - but as it took me days to write I don't want to have to retype it!

Basically (if you can't be bothered to read this as it is very long and boring). I got RSD when I was 16 after injuring my right wrist and I am 21. In that time it has spread full body and I have developed secondary dystonia which is also body wide. I have just started at university and am studying psychology. I am in a wheelchair and have a live in 24 hour carer. I love animals and have 5 cats and 2 dogs at home and unfortunatly none at uni. I used to be very musical but now prefer hanging out with my friends or reading.

Take care and pain free hugs!

Rosie xxxxxxxxxxxxxx (a.k.a Frogga)

I have apparently had HMS for most of my life but wasn't really affected by it -my joints hurt if I did too much and I have pretty bad neck pain from the age of about 8. However, I still did sports, played for my county in hockey, was a grade 7 piano player and also played the double bass, accordion, organ etc. I was predicted 12 A* at GCSE (highest grades you can get) and was on an academic scholarship to one of the best private boarding schools in the UK.
When I was 16, in January 2002, I was packing to go back to school when I slipped going up the stairs carrying a pile of ironing. One of my cats, Fred, was walking down the stairs and ran between my feet and I went flying, hit the top of the stairs and in a desperate bid to not drop the ironing I threw my right hand out. I landed on my right wrist and fell down the stairs.
Everything went black.
When I came too my arm hurt so much I thought it was going to kill me. It had swelled to three times its size and had gone black and purple and ice cold. I couldn't move my fingers, wrist or elbow and it just hurt SO much. When mum got back from visitng my grandma she too me to A and E (ER) and they thought I had broken my arm. The X rays showed nothing, so the drs put me on some pain killers (dihydocodeine - similar to percocet I think) and sent me home with collar and cuff and told me to rest it. I went back to school (crying in the car - the vibration hurt so much) and tried to get on with life. The alloydinia was so bad that I couldn't keep any clothes touching my arm, nor bed sheets, blankets, water or anything, wind made me cry, everything hurt so much I thought it was going to kill me. Two weeks later I was still taking the tablets and getting no relief, no sleep and just generally going insane with pain. I went to back to A and E (ER) at my local cottage hospital close to school (Basically meaning they can take X rays and thats it) and they told me I needed an emergency appt with my PCP in case it was a blood clot. Anyway - saw the GP (PCP) who recognised it as RSD. He increased my pain killers, referred me to pain management, orthopaedics, rheumatology and physiotherapy and told me that I had to move and touch my arm to get better. So started a long process of treatment. I saw the rheumatologist 2 weeks later who then said that it was the worst case of RSD he had ever seen and if I couldn't get my arm moving then it would be amputated. I got admitted to hospital and started inpatient physio, hydro etc.
Two weeks into treatment the RSD spread into my right leg. It had been hurting and I woke up to discover that my leg had gone black, ice cold and just generally horrible. I couldn't weight bear on it so I was given a crutch for my good arm and hopped in conjunction with the crutch. I was working really hard on physio and had got some movement in my fingers but the swelling still wasn't going down. I had turned into a drugged zombie as the nurses tried to keep my pain levels low enough to move but the only thing I could think was "this pain is going to kill me" and at times even breathing burnt so much I didn't know how I could live through another minute.
I got discharged from hospital, still hopping with the crutch (they had tried to suggest a wheelchair but I told them I wasn't going to use one) , still unable to do anything with my right arm. (this was March 02). I was then spending a fortnight in hospital, a week at school and a week at home and then back to hospital. By now I had had to move into my house mistresses flat because I couldn't do stairs and my friends had to help me dress, wash etc. I was doing physio everyday, seeing the physios 3x a week, the OT's 3x a week and just trying to get some function back in my arm and leg.
This continued till April, when a "friend" broke my left wrist by dropping something on it (by accient admitedly - but im still cross about it). The break was lightly plastered because of the RSD and I had to hop everywhere on my left leg because I couldn't use a crutch until I asked the physio for a gutter crutch. Two weeks later the cast had to be cut off my left arm because the RSD had moved into it - my left arm had swelled so much the circulation was cut off to my fingers and I still have the scars from the cast. I was readmitted to hospital again. Sat my GCSE's in hospital and continued with the physio. So, it was May, and I now couldn't walk, use my arms or anything. Then came months of being in hopsital, doing physio, hydro, OT. drugs, infusions, quests for knowledge, increased pain management etc.
My drs finally decided to try a lumbar block as I just couldn't handle the pain any longer. It was my worst decision. I had it done and as soon as I came round from sedation my left leg had gone black. Whatever had happened whilst I was out - the RSD was now in my left leg as well. The sensitivity had got to a point where I was in shorts and a t shirt and I couldn't sleep on a bed - I had to either sleep sitting up or lying across a bed with my arms and legs hanging off. I lived in fear of being touched and was always on my guard in case someone came too close to me.
I finally came out of hospital in October time and tried to start at a new college on a full time course. I came out able to use crutches around the house and feed myself and that was about it. I dropped out of the A level course by december because I was in so much pain and so exhausted I just couldn't cope - I was still doing all the physio, all the desnense etc.
In November 2002 my physio put me in a wheelchair because I was so unsafe walking and because I had an infection in my legs. It was only going to be for a week or two. Four years on I am still in it. Whilst I was in the wheelchair I got dropped on the floor and broke my ankle causing dystonia in it and causing it to twist upside down and invert. Unforutnatly that was my "better" foot. From then on I started to get really bad muscle spasms, dystonic postures and found my muscles stopped responding how they should have.
Anyway. I then spent 02 and 03 in and out of hospital, trying new meds, new drs, new treatments, HBOT, blocks, infusions, physio, OT, hydro. Got assessed for and given new wheelchairs, started to have adaptions done to the house.
In Spring 2003 mum and I realised I wasn't going to be "magically" cured so she started a new thing with me. We decided to choose one symptom which seriously destroyed my qualiy of life - hypersensitivity - and worked on it. Slowly it started to improve, though we would have argument after argument about it - I wasn't allowed out of the house unless I was wearing trousers, socks and a cardigan and slowly as I forced myself to confront stimuli I realised the sensitivity was improving. I got a new bed (a heated water bed) and mum used to get up and check that I hadn't removed all the covers etc.
(you can tell she's a military nurse). ~Anyway - the sensitivity started to be dealt with slowly.
As I live in a very quaint area of the UK it thus means there is no wheelchair accessible public transport - and as I am miles from my nearest town and at least a 30 minute drive from college I learnt to drive an adapted car and passed my test.
I started back at college in Septemeber 2003 and managed to complete the year with ACC at AS. Went on to do another year at college and found a boyfriend who I pretty much lived with. He accepted me for who I was and what I could and couldnt do (I could feed myself, dress myself with help, drive
etv but still needed a wheelchair and help with quite a few things, cutting up food, getting in and out of bed, being lifted in and out of the bath etc).
Anyway - that year I got ACA in my exams. In this time my pain and dystonia had been getting worse. Although I had devleoped a better attitude towards the pain and realised that I had to get on with my life, and was still doing the physio etc I wasn't getting better, I was just getting worse. My feet were both totally inverted and my toes pointed backwards over my feet. I couldn't use my left hand at all because all my fingers had locked. I had specific splints for stretching my joints out but they were being odd. I got engaged to Jay and then broke up with him, realiing that firstly I didnt want this level of commitment and secondly it wasn't fair on him to spend his life with someone needing to be looked after allt he time.
I got referred to a neurologist in October 2005 after the spasms dislocated both my thumbs. This had been happening reguarly and had ended up with spasms whereI had dislocated thumbs, shoulders, knees etc. But my thumbs were the biggest problem as the spasms would pull them out of joint and then backwards over my hands - which was VERY painful and annoying! He didn't understand what was going on and so ordered an EMG to be done as he felt that it wasn't possible for RSD to get as bad as mine was. Meanwhile my pain management dr had decided to put me on ketamine because I was still not sleeping for more than 3 hours a night and even though I could now cope with clothes I still couldn't cope with anyone touching my skin etc. The ketamine trial was good and worked better than the high doses of fentanyl and morphine I had been on and so I switched.
A week later I got bitten by my dog and jumped. I couldnt open my mouth or hold my head up. Apparently the jump had caused my to develop orimadible dystonia. To avoid having to have tube feeds I had to be on liquidised food to try and eat it, though it also had to be thick enough to swallow as I also had problems with that. I was placed in a full spine/ neck brace to hold my head up and more tests continued as to why I had lost the use of it. Orthotics made me a special brace that I used during the day in conjunction with the head rest on my wheelchair to keep my head upright and to allow me to drive.
In March I had the EMG. Straight after those I lost almost the entire use of my arms (before I hadn't been able to use my fingers or thumbs, now I coudnt move my elbows either or my shoulders). Loads more tests etc and they discovered I had severe dystonia (which I have botox for). However, in 2006 I stayed in college, managed full time and managed to get 4 A's - the highest grades you can get. I got a place at a prestigous college to study psychology.
So now, on the 5th anniversary of me having RSD where am I? I am still in severe constant pain, I haven't slept through a night in 5 years. I take ketaime, dihydrocideine, baclofen, diazipam, benzhexol, ibuprofen, paracetemol and diclofenac. I am living away from home at university most of the time. I have live in 24 hour carers who feed me, dress me, lift me, etc. I use an electric wheelchair or am pushed around in my manual. My hands don't work and I have to have someone with me to do anything at all. I am waiting to see a neurosurgeon about possible having a DBS implanted. Both my feet are inverted and twist over each other, my toes are twisted backwards, my hips have twisted too. My periods stopped for several years and have now re started very sporadically. I still can't hold my head up and though my jaw has improved I still can't eat very solid food. I still aspirate frequently and have difficulty with swallowing. My elbows still don't work and my shouldners anre't much better. The botox has helped my right hand abit so I can operate my electric wheelchair. I have RSD full body and everything hurts, burns, stabs, screams. I can now wear clothes (but not shoes) but everything that touches my skin still feels like it is burning holes through it.

But at the same time - I now have a life - which is something I never considered possible. I have friends, I go out, I try and be as "normal" as possible. I even went on holiday last summer with my friends. I will never stop hoping that there is a cure or some relief somewhere out there - but my life is not going to stop whilst I wait for it.

Thank you so much for sharing your story

AiKane
03-28-2009, 04:04 AM
New here. I typed my intro only to lose it before I posted:mad:. So I will give a very short version without all the good details. First, my username means Friend in Hawaiian. I am not Hawaiian but lived on the island.

My RSD started from a flight while on business travel. Got a blood clot (DVT) which was left untreated bec was un diagnosed by WC doc. Went months getting worse, while tossed around by docs. My WC doc couldn't give me a dx unless it was confirmed, but sometimes some are too small don't show on ultrasound. Was in ER also numerous times only to be sent home in same or worse than when I went in.

FYI - I work in clinical research and around lots of docs and many years in health industry. It was my coworker MD's that finally used their influence to get the WC to go with their suggestion/referral to another Friend MD who is Chief Director at a teaching hospital. Lots of diagnostic tests/scans, etc, etc first thought was Lymphedemia but finally diagnosed with RSD.

Had no support from family or friends and no one to turn too, so a few times had to call ambulance to lift me in a cage, call "scooper"to transport me to ER. Only to get doped up bec they didn't know what to do, even though I went to the same hospital my file is at, until they finally called my PM doc the next day. Oh need to mention, in so much pain, had to have a catheter and they never gave me an IV for fluids. When I was finally released, couldn't walk, sent home with a walker and major doped up.

Marriage was already on rocks and only got worse. Meds take me 2 months to adjust to function again, and this only put more strain on marriage. After some PT, med trials and procedures, finally had some kind of normalcy in life. This only made me see how bad the marriage got. I decided screw you, and packed my belongings and shipped them and me to an island-Hawaii, where I was far enough away from non-supports and long distance calls to harrass me about my actions. I finally decided to think of me, selfishly for once.

While in Hawaii - I loved it, my body loved it. I felt good: was able to walk, take a bus, relax on beach, less symptomatic - wow, i thought. Again everyone chose to not understand why i was happy. Well, after almost a year and pending judge signature on divorse papers, my husband had a huge wake up call and made changes. We decided one last time (3rd separation/3rd marriage therapist) to try to work out our issues. I must give all credit to GOD for changing both our hearts, the counselor/pastor for sharing with us tools what a healthly marriage is. We stopped our divorce in the nick of time before was officially over and working to develop a new marriage, which is going good.

Since I returned to the mainland, however, any strides in hawaii R gone, my health has gone down hill. Doc wants to tweek my meds and I'm scheduled for another LSB. I surely miss the island and love living in middle of an ocean and everything hawaii gave me, but my husband won't move there, have a daughter who is a senior this year, and with the economy, work is hard to find, here and harder on an island.

Looking for work here, interviews coming up (why can't have change in meds) and have to fight to continue to be able to work (which every1 knows) can be a challenge. My husband was recently laid off and unemployment for both of us don't cover our expenses and our 2 (out 5 children) at home. I do have an atty and a QME schedule in a few months. RSD dx in early 2007, started in one leg and spread to both full legs, both arms and upon returning to mainland started in face around lips and one cheek. The electrical zaps also returned two-fold especially at night in my legs and head. I have these brown scars used to be sores on both legs and middle of my back - don't know what they are, do you??

Liven hour by hour -
Mahalo for reading my story.

angelrsd
03-28-2009, 03:34 PM
AiKane
i just wanted to say welcome and glad that you found us. i am so sorry that you have had such a ruff time with the rsd. i have had rsd full body and organ involvement for 11 yrs. i was 16 at the time so it was very hard for me to get DX period, so i know how you feel. i bet hawaii was awsome i went there as a kid before i got sick and loved it .. didnt want to go home

welcome again jump and join the party

carrie

tjbird
03-29-2009, 01:51 PM
tjbird here and I hear where you are coming from. It is so hard to teach Dr's what is wrong. I live in the Mountains of Virginia and I even had a shrink tell me that the only thing he knew about RSD was that is was a "bear", haven't seen him since.

Jimking
03-30-2009, 09:34 AM
I'm new here, I've read everyone's intro posts and see the similarities those with RSD and caregivers go through. My wife Suzy contracted RSD in 2002 from a fall in which she broke her right wrist. She tripped and fell, at a family function in northern NJ, reaching out with her right hand as a brace when she fell. Her hand and arm turned blue as we rushed her to the hospital.

To give everyone an idea of my wife is that she is very stubborn and shy when dealing with doctors. I've known her for 29 years and in 22 of those years she may have went to the doctors twice. Her mother told me Suzy would cry as a child during doctor visits. Simply put, she doesn't care for doctors which have made these last 7 years shear hell. She was an athletic person who loved sports and even contact sports such as football and basketball.

At the hospital Suzy refused to stay the night and insisted on having the arm temporarily set and will have the arm looked after when we returned home to Washington DC suburb in Northern Virginia the next day. After two weeks under her doctor's care, the doctor told her and I that her arm was not set correctly and needed to be re-broke and set at the hospital. Suzy objected over the doctor's and my insistence that she check into the hospital. She insisted that the doctor numb her arm in her office and re-brake and set it there. Two doctor assistants remarked after the procedure that they've never seen any thing like it before.

Suzy did follow the doctors advice once the arm was reset and healed but never recovered. She soon went into PS in which I participated helping her stretch and move her locked wrist for a short time. Her pain increased and the doctors let her go. For 2 years she would go from one doctor to the next seeking relief of her pain and keeping me at arm's length, telling me everything was ok. After 2 years she told me she was diagnosed with RSD and was told this a year before. I, of course, researched this disease and went into denial, no way a disease like this can exist! At this time and several years after Suzy's RSD pain was not controlled at all. She only took aspirin for pain. Within the 3rd year Suzy started to loose her mind and started to hallucinate from the pain and became very paranoid. She complained to me the doctors refused to help her and more or less told her she was nuts and to pull herself up by the bootstraps and go see a shrink. I had my doubts about this, got angry and insisted that I take her to every doctor's visit.

I was shocked at these doctor visits. They would just brush her off as I sat there slacked jawed! With her right arm totally crippled, hairless, waxy white and cold, tears pouring down her cheeks, both of us begging for a plan to help her, we were brushed off again and again, told once more, yes she has RSD, prescribed Tylenol 3 and go see a shrink. We even made it to that Prestigious hospital in Baltimore, Maryland only to be treated very rudely and shown the door and all this from doctors who've told us they treat RSD.

Why are they doing this, there must be a reason. We would go to all these doctors with her records, MRIs, EMGs etc. and they would seem to get an attitude real quick not because we were rude because I was always dumb founded by the hole thing and was overly nice and calm. I just couldn't not figure it out! Suzy then started to explain to me the reason, in which I found hard to believe too. She believed it was because of her work which was the world's largest defense contractor and that she worked for their benefits department at their corporate headquarters for 15 years. She believed that it was her employment through her health insurance that was trying to dump her. She said she witnessed this over the years where a person was deemed worthless to the company because of a illness. She said, before it happened, that either the insurance company, who have representatives work full time at this large company, would make it difficult for treatment thus she would be unable to work so the company would dump her relieving the big company and the insurance company of a dead beat. I started to get hints that there maybe some merit to this when I explained 2 times with the insurance company that we are having a hard time finding a doctor who will treat her RSD. The insurance company told me both times they have never heard of RSD.

That time came when Suzy could no longer work and was put on short term disability-6 months, 4 years after her injury. At that time we found a doctor who appeared to want to treat her and prescribed some meds for her to control pain etc. Not the strong stuff but it was a start and we were exited about it. She saw Suzy 3 more time when the doctors where switched for some reason. This new doctor (the founder of the clinic) cut her meds down to one Vicodin per day and the weakest one at that. At the end of the month we went back to this doctor where I asked him what is the plan to help Suzy and he ignored me, I also asked him very nicely if there is no improvement with Suzy's condition will he sign for her long term disability which was coming due? He ignored me and left the room. He spent no more than 5 minutes with us. Two weeks later we found out that he ordered Suzy back to work, that she was fine and dandy. Suzy was terminated from work shortly there after.

Here's the kicker. When I picked up health insurance from my work to cover Suzy she immediately received treatment. The new doctor, in 2007, prescribed a very strong combination of drugs to help her in which it did. She was able to sleep through the night for the first time in years. She became much more normal. The doctor then sent her to George Washington Hospital for ketamine infusions and PS.

We've been in the process of getting Suzy SSDI for 2 years with an attorney with no luck. Senator Mark Warner of Virginia has stepped into her case to help her get the benefits that she earned from 30 years of work. My biggest fear is for us to lose our health insurance in this economic climate we are all in. I pay out of pocket $800 per month soon to rise to $1000. I really need her to receive medicare for our survival.

Suzy explained to me why she kept me in the dark those first couple of years. Her fear was that I'd leave her.

Jimking
03-30-2009, 10:27 AM
I forgot to mention is in those early years of neglect the RSD has spread from Suzy's arm to the other, both legs and her back. She is now in level 3. :(

Fireball
04-02-2009, 05:02 PM
Just diagnosed 6 months ago, not much support or experience for the medical community in the area where I live.

Depending on where your RSD is. Aqua therapy is WONDERFUL. To just hang in a pool. Takes all the pressure off and help's one feel pretty darn good for awhile. After I get out of the pool, I can actually go to walmart by myself and manage in the wheel chair for quite awhile. It makes me feel great. Gathering information on the net that is congruent with your situation might prove to be benificial to you when you do see a physician, if they don't know too much about RSD. I'll have to go back to the rules of the forum to see if I can give you more detailed information or my e-mail address. As my memory fails me frequently. But I'm not going anywhere. Hope to see you in chat sometime. As I'm looking forward to chatting here as well. soft hugs.:hug:

shogan7RSD
04-03-2009, 08:44 AM
I am very new to this all. I just need some support.
Last fall I was diagnosed w/ RSD, but I don't have any of the major symptoms (other than the pain in both of my arms, shoulder down, that started in my right wrist 6 months after I had carpal tunnel surgery, and some allodynia). The doctors are baffled by my lack of sensitivity to hot and cold, and I have burning pain only occassionally. No excessively dry skin or sweating and no redness.
I am in pain all the time, like all of u, and am having difficulty just accepting this disease.
I can't work because of the pain and haven't worked since last July, when the pain got too bad.
I feel blessed to have found this forum, where I can talk to others in worse shape than me, no offence.

Sarah

ali12
04-03-2009, 10:10 AM
I am very new to this all. I just need some support.
Last fall I was diagnosed w/ RSD, but I don't have any of the major symptoms (other than the pain in both of my arms, shoulder down, that started in my right wrist 6 months after I had carpal tunnel surgery, and some allodynia). The doctors are baffled by my lack of sensitivity to hot and cold, and I have burning pain only occassionally. No excessively dry skin or sweating and no redness.
I am in pain all the time, like all of u, and am having difficulty just accepting this disease.
I can't work because of the pain and haven't worked since last July, when the pain got too bad.
I feel blessed to have found this forum, where I can talk to others in worse shape than me, no offence.

Sarah


Hello Sarah and Welcome to Neurotalk - you will meet many great people here who I am sure will be more than happy to help you in anyway they possibly can!!!

I'm sorry to hear about everything that you have and are still going through:hug:!! I really hope that things start getting better for you soon and you are in my thoughts.

I also suffer from RSD. It currently affects both arms and my left leg. I developed it when I was 12 years old after I fell and sprained my ankle and am now 14. I have tried all sorts of treatments to try and help but none have helped that much really. I am now on Oral Ketamine although my doctor doesnt like me taking it too much as he feels that it could mess up my hormones because of my age etc.

You dont have to have all of the symptoms of RSD to get diagnosed. I think when my Doctor diagnosed me, he said that you have to have at least 5 of the symptoms to get diagnosed. I have all of the symptoms of RSD and when I was diagnosed, my doctor told me that I was the first case he had seen in over 20 years that was text book RSD - it's a shame that my other Doctors didn't pick up on it before then!!!:(

Everyone is different when it comes to dealing with this awful disease and no two people are the same which makes it really hard for Doctors to diagnsose and treat it properly. Some people might have most of the symptoms whilst others might have them all etc.

If you dont truly believe your diagnosis, I would consider getting a second opinion if you haven't already. I KNOW it can be very stressful but it would probably put your mind at rest and you need a doctor that you feel comfortable with and that knows about RSD.

Please feel free to post anywhere on the forum and ask any questions you may/will have!! No question is silly and im sure someone will try and help you if they can!! Everyone is so nice here and I honestly dont know what I would do without this forum!!!

I understand what you are saying about having a hard time accepting this disease and im sure many others too do!!! I had a real hard time accepting that I had RSD and would literally spend hours in bed just crying and I didnt go out of the house for months because I didn't feel up to it and didn't want others to see me as being 'different'!!!! I got really depressed and it got to the point where I actually wished that I was alive. I eventually found a nice Psychologist in London and she really helped me and gave me coping mechanisms to try and help. I still get depressed, especially if I cant do things that my friends can but im not as bad as I was and can control it a little better. I also have my Psychologist's email so I can talk to her whenever I need/want to.

Do you see a Psychologist?? It might be something to look into if you dont already as they can really help. I actually want to be a Psychologist when I am older and am trying to get accepted onto a Health and Social Care Course!! This disease has taught me a lot and I want to try and help others who are in the same situation as me. There's a few people on here that see a Psychologist/Psychiatrist to help them come to terms with their illness so it might be worthwhile speaking to them about it.

Take care and if you need anything, please know that I am here for you because I DO understand some of what you are going through!!

Alison.

quackingmoose
04-03-2009, 10:42 AM
Hello everyone,

My boyfriend has had RSD/CRPS for 5 years now. Recently it has spread and mde his pain worse where he is unble to work and travel for longer that 30 minutes.

He is prescribed:
Percocet 5 ml 3 times a day
Lyrica was 75ml 2x a day but now it will be 100 ml 3 x
Soma, didn't work so he's off that
Physical Therapy was 3 x a week but they determined it wasn't working and discharged him.

I am trying to be supportive and beleive me it is the hardest thing in the world that I have been given to tackle. I am doing what I can but the most frustrting part came today when the doctor wouldn't listen to him. I was right there in the room with them and the doctor ignored everything my BF was telling him.

I found a great website I am working with to raise research funds. I just need to hear from others with and without RSD and how I can be a better supporter.

Thank you.

ali12
04-03-2009, 12:16 PM
Hello everyone,

My boyfriend has had RSD/CRPS for 5 years now. Recently it has spread and mde his pain worse where he is unble to work and travel for longer that 30 minutes.

He is prescribed:
Percocet 5 ml 3 times a day
Lyrica was 75ml 2x a day but now it will be 100 ml 3 x
Soma, didn't work so he's off that
Physical Therapy was 3 x a week but they determined it wasn't working and discharged him.

I am trying to be supportive and beleive me it is the hardest thing in the world that I have been given to tackle. I am doing what I can but the most frustrting part came today when the doctor wouldn't listen to him. I was right there in the room with them and the doctor ignored everything my BF was telling him.

I found a great website I am working with to raise research funds. I just need to hear from others with and without RSD and how I can be a better supporter.

Thank you.


Hi Quackingmoose and Welcome to Neurotalk - it is great to have you here and you will meet many great people who I am sure will be more than happy to help you in anyway they possibly can!!!

I'm SO sorry to hear that your BF suffers from RSD also:hug:! I really hope that things start getting better for him real soon and you are both in my thoughts.

I also suffer from RSD. It currently affects both arms and my left leg. I developed it when I was just 12 years old after I fell and sprained my ankle and am now 14. I have tried all sorts of medications and procedures and none have really worked that well for me. I am now on Ketamine as a last resort but my doctor doesn't like me taking it as he feels it could mess up my hormones because of my age etc.

I cant imagine how hard it must be for you as a Caregiver to have to watch your BF go through all of this and not be able to help and make him better - it must be the hardest thing in the World :hug:! My mum is my caregiver and I honestly dont know what I would do without her, she has helped me through a lot of the rough times and has been the only person in my family that has really supported me 100% through all of this. She posts on the forum sometimes when I am unable to so if you would like me to get her to PM you, please let me know as i'm sure she will be happy to as she understands a lot of the things you are having to deal with as well!!!!

I give you a lot of credit for sticking by your BF and trying to support him - I know its hard and it takes a strong person to do that!! Please dont ever be afraid to let your emotions out - I think sometimes people forget that RSD affects the whole family, not just the person suffering and it's important that you vent all of your feelings. We have a Caregivers section on the forum so please feel free to post there should you wish as it's important that YOU get support also!!!!

I'm sorry to hear that PT isn't working for your BF. I can relate. PT didn't help me at first, then it started helping a bit and I was able to walk where as before I was wheelchair bound but didn't cure the pain and it isn't workling at all for me now. We are looking at other options to try as a last resort and I think we will probably try Botox as I have severe Dystonia's (movement disorder). Please tell your BF to keep moving as much as possible though - I KNOW it is really painful, trust me, I do but it is probably the one thing that will help in the long run - even if it doesn't feel like it now!!! My Doctor always says that we either have to use our RSD limbs as much as possible or loose them and it's true!!!!

I have been on Lyrica also. I didn't help me and I put about 25lbs on whilst on it so eventually, we decided that it was best if I come off it. I really hope that it helps your BF and that he gets some much needed pain relief!!! Everyone is different when it comes to dealing with this condition so it makes it hard for doctors to determine what will work and what wont unfortunately.

Take care and I hope to see you around the forum more soon!!! If you need anything, please dont be afraid to ask because I DO understand some of what you are going through unfortunately!!:hug:

I hope things start getting better for you soon and please dont give up hope!

Alison

hopeful11
04-05-2009, 05:55 PM
Hello everyone. I have used this site a little and wanted to introduce myself. I used hopeful as my user name because I refused to give up hope that someone will find a way to cure this disease. My CRSD started after a fall on the ice. I thought that my arm would hurt more if it was broken, so I did not get it checked. After 6 months a Dr. at work, I was a surgical RN, did a X-ray of my Left wrist. It was broken but healed. So I started to see him at his office. We tried to figure out why my arm was in so much pain, more than when it was broken. My arm did freeze up on me, so I had 3 different surgeries to get my movement back. Then my Dr. went on a convention about pain, to try and help me, that is where he heard of RSD. He was 98% sure that was what I had and sent me to a pain clinic. I was diagnosed with RSD in1998 about two and half years after this started. I went through most of the greiving period and now I am trying to do as much as I can. I do have many days that I still grieve my lost, however I have tried to look at the postive, and remember that there are many more people worst then me. Today was a really bad day of pain so I in my "pain room" so I have time to write this. I wanted to thank everyone who has posted on this site it has all ready help me. Hopeful

stressedout
04-08-2009, 07:18 PM
Hi, I was just diagnosed today with "mild" crds. I had torn a ligament in my hand at wk back in Dec. After 6 wks in a cast and the rest of this time in a splint, pain worse and spread to my whole hand from just my thumb. It feels like my hand is being ripped apart and it burns. This is mild?! Anyway, I have some swelling, a bit of color chaange (red w/white lacey pattern sometimes) sometimes it is colder than my other hand but not always. The pain is worse when I try to move or use it and it's constant. I can't think, concentrate, sleep, i am irritable etc. I bet my kids are ready to run away . I am in OT and it seems to help. This is under wc. Anyway, pain magmt doc gave me a creme for my hand and ultram but suggested nerve blocks, especially if no improvement in function in the next 2 wks. I was just so stunned today, i am on an emotional roller coaster I couldn't even think of questions to ask.

The wc nurse case mgr says that if meds don't wk we'll do nerve blocks and that will cure it...is that true? I feel like i am losing my mind.

ali12
04-09-2009, 04:23 AM
Hi, I was just diagnosed today with "mild" crds. I had torn a ligament in my hand at wk back in Dec. After 6 wks in a cast and the rest of this time in a splint, pain worse and spread to my whole hand from just my thumb. It feels like my hand is being ripped apart and it burns. This is mild?! Anyway, I have some swelling, a bit of color chaange (red w/white lacey pattern sometimes) sometimes it is colder than my other hand but not always. The pain is worse when I try to move or use it and it's constant. I can't think, concentrate, sleep, i am irritable etc. I bet my kids are ready to run away . I am in OT and it seems to help. This is under wc. Anyway, pain magmt doc gave me a creme for my hand and ultram but suggested nerve blocks, especially if no improvement in function in the next 2 wks. I was just so stunned today, i am on an emotional roller coaster I couldn't even think of questions to ask.

The wc nurse case mgr says that if meds don't wk we'll do nerve blocks and that will cure it...is that true? I feel like i am losing my mind.


Hello Stressedout and Welcome to Neurotalk!! You will meet many great peopl here who i'm sure will be more than happy to help you if they possibly can!!

I'm SO sorry to hear about everything that you have and are still continuing to go through!!:hug: I really hope that things start looking up for you soon and you are in my thoughts!!

I also suffer from RSD. It currently affects both of my arms and my left leg. I developed it when I was 12 years old after I fell down some stairs and sprained my ankle and am now 14. I have tried all sorts of medications and treatments but none have really worked - the only med that offers me some relief is Ketamine but my doctor doesn't like me taking it as he feels that it could affect my hormones etc because of my age. We are now considering trying other options such as Botox as a last resort.

What the WC nurse said is totally wrong!!!! Unfortunately, there is currently no cure for RSD however it CAN be managed with medications, nerve blocks etc! Remission means that the symptoms can go away for a period of time although the RSD isn't fully gone and can still flare back up again. Everyone with RSD is different and that makes it really hard for doctors to determine what will work for you as what works for one person, might not work for another. It can usually take a period of time for you to find the right treatment plan. You are pretty "lucky" that you got diagnosed so quickly - doctors usually say that the best chance of RSD going into remission is if it is caught within just over 3 months.

Have you tried Physical Therapy?? I KNOW that it is really painful but it is probably the one thing that will help you in the long run. If you aren't having PT at the moment, start off by doing some gentle exercises at home and then gradually build them up as and when you feel able to. With RSD, Doctors say that you either "Use it or lose it" and it is true!!!

I can relate to the feelings of being angry, frustrated and irratable and i'm sure many others can also!! RSD affects the Limbic part of the brain which is where moods and emotions is controlled. You are also fairly early into your RSD and you are probably still in denial which is VERY common!!! It took me over a year to start and accept that I have RSD and I dont think that I have fully accepted it now! Do you see a Psychologist?? They can help you come to terms with dealing with a diagnosis if you see one who knows what he/she is talking about!!!

Take care and if you need anything, please know that I am here for you because I DO understand some of what you are going through and just how scary it is to get diagnosed with such an horrible condition!!

Pain free hugs,
Alison

Coerley
04-19-2009, 12:23 PM
Hi Everyone, My chiropractor has been researching for the past 2 years to try and find help for me and my RSD. He talks to physicians, patients, and alternative medicine doctors all over the world. The other day, he suggested trying a Bio-Mat. I can understand how this can help and he has another patient that has been having relief from using it. The only problem is that there is no facility in my area that has it. The other patient purchased one for herself, but it costs $1700. I am not against paying that if it will help me, but I wanted to see if anyone has tried it and got relief. She is willing to rent the mat out to me for a day to see if I want to purchase one for myself. Let me know if any of you have tried this or heard that it may help. If I do purchase it, I will be back to let you know if it does help.

loretta
04-20-2009, 01:36 AM
Hi Sue and Welcome.
No, I've never heard of a BioMat. I'll ask my Dr. and try to do some research. I've taken Biofeedback and know that is an excellent way to calm down. Also Breathing exercises, Visualization, Meditation, Of course Physical Therapy, and massage therapy. I found swimming to excellent, water needs to be 86 or warmer. Keep moving, stretching. I had frozen shoulder right after surgery, pt and massage took about ayear, but well worth it. Then the other shoulder, then left hand. Hand only got 50%, but and bend fingers some. Kept the toes from freezing up by swimming exercises, and following Drs. exercises.
I'm going to try HBOT as soon as my Dr. finishes his new clinic. Heard good things about it and talked to a couple of people. I have full body-3 years. Took 4 years to get diagnosed. I live in Arizona, where do you live?
I have learned so much from this forum and got so much support. Wonderful group of friends here that truly understand the loss we all face, pain, and change in our life. I'm grateful for my family, and friends. It's something that is so difficult to get your brain wrapped around, especially since our brains have those memory problems! Take care, and let us know what you find out. Again Welcome, happy you have joined our group. loretta

RSDLynnie
05-03-2009, 06:18 AM
I've been participating for a few weeks now and guess it's time for an intro. 7/24/04 I was riding with my motorcycle group when I "met" a speeding truck in a one lane railroad underpass. Survived with a only a badly broken right leg, 3 1/2 weeks in hospital in so much pain. They sent me to a psychologist because I was crying so much. Second visit she finally agreed that I wasn't mental but actually was in pain! It didn't help that my mom had gone into the hospital 4 days before my accident and was close to dying. For the next 1 1/2 years my surgeon kept saying to give it another 6 months and the pain should go away as did 2 other ortho consults. Finally a physical therapist suggested I had RSD. My surgeon didn't believe it but my family doctor did. Another 6 months before any tests for nerve conduction then pain doctor I was referred to did 2 nerve blocks with no ease. Changed to another pain doctor who specializes in RSD (he's considered an outsider and strange by the established physican community) because he believes there is a correlation between the vascular & nervous system, heavy metal poisoning or inflammation may underly the RSD. It's interesting that recent research is beginning to support his therapies. He also found out I had deep vein thrombosis and have mild lupus and some weak ligaments. He founded the local South Carolina RSD support group! He calls me emotionally fragile and we finally have come to an understanding that I'm not bipolar but have post traumatic stress and am entitled to cry when I hurt.

It's been pretty difficult as you all know but those first few years were horrendous. My Mom was in the hospital, nursing homes and assisted living for 2 1/2 years and I had to move her 7 times. Thankfully she is now back a home. I got served with divorce papers 2 days after I got home from the hospital. My son was working and going to school full-time and he'd just threaten (tease) to put me in the psycho ward if I didn't stop crying. He doesn't want to know anything about RSD so doesn't understand or empathize, some times he gives me a hard time about not doing housework or yard work. He's been great about the big things around the house - reroofed it, insulated attic and crawlspace, painted decks & storage shed, etc. but neither he nor his girlfriend do much although they stay rent-free (that's another story).

I work for a large hospital system in employee benefits and am trying to hang in there until I can retire in 2015. I've already had to take a demotion due to the RSD and every week it seems like it becomes more difficult especially when I don't sleep from the pain. They just hired another person to take over 1/2 my responsibilities (it's now taking 3 people to do the work I did along before the accident!) and I've formally asked for flexible work hours and to work from home as my responsibilities now are 99% computer based. I've been working from home after hours and weekends for at least 15 years but they say we don't have a policy so they won't committ to accommodations under ADA even though the Department of Labor recognizes these accommodations as reasonable. So I just continue to track hours I work from home including days my manager okays for me to work at home in case they try to fire me for missing scheduled work hours.

I hate the pain, I hate not being able to do things I could before, I hate being exhausted all the time, I hate no one really understanding how hellish RSD is and how it affects every facet of living. But I appreciate that so far the RSD has not spread to other parts of my body, I appreciate my Mom for caring enough not to complain when I don't see her often enough now that she's homebound, I appreciate my sister who comes to help with Mom every vacation even while she is dealing herself with a life-threatening brain disorder, I appreciate my funny, loving dog (my pet therapy), I appreciate the sights and sounds of nature. I hope more answers/therapys come quickly for all of us. Lynnie

CRPSbe
05-03-2009, 09:42 AM
Lynnie, what a story! I am so sorry you had to go through it all, the accident, the excruciating pain, the way the RSD was discovered. I don't blame you for crying. Anyone would cry in your position. I still cry. It's nothing to be ashamed about.

If there's anything that RSD patients all have in common it's that they try very hard to keep their lives functional, and themselves functioning. If it's taking 3 people to do your job right now, then praise them for keeping you employed. Not many employers are so kind. Hang in there. I hope something can be accomplished with the ADA accomodations.

I am hoping along with you that the RSD will stay contained in one part of your body, so you won't have to give up anything else in your life.

I admire you for seeing the good in your life too.

Welcome to the forum!!!

Coerley
05-10-2009, 10:08 AM
I just wanted to say that I have purchased the Bio-Mat last Friday. It was delivered on Thursday and I started using it on Friday night.

So far, I have used it two nights on the green settings. After the first night, and I know this sounds too good to be true, and I am a person that does not believe what I hear I need to try it to believe it, my fingers were loose. I did not have the stiffness like I have had for the past 7 years. It lasted until about 4 p.m. It was great. Yes, the pain is still there, but the pain will take the higher settings to alleviate the pain. I could turn over in bed without pain in my hip (RSD) and my back (normal back ache). My ankles that were constantly swollen from osteoarthritis were normal (no swelling until about 7 p.m. at night). I sound like a infomercial, but I am speaking the truth, I have not felt this good in years. My pain is still here, but I do have high hopes of it decreasing somewhat. I am slowly increasing the settings in the morning for about 30 minutes to the higher settings until I am comfortable with the highest setting which will alleviate the pain. I will keep everyone informed.

If anyone is interested in the bio-mat, let me know. I will give you the name of the lady that helped me with my purchase. She is extremely nice and helpful. She is a distributor. She has other clients that have RSD that purchased the mat. She is great. I have her name and number and email if you are interested. It is expensive, $1790 total price for the mat, pillow, and shipping. But so far, it is worth it. I have a better outlook on life in only two days.

Judy L
05-12-2009, 06:21 PM
Excerpt from Frogga's intro.: [But at the same time - I now have a life - which is something I never considered possible. I have friends, I go out, I try and be as "normal" as possible. I even went on holiday last summer with my friends. I will never stop hoping that there is a cure or some relief somewhere out there - but my life is not going to stop whilst I wait for it.]

******

Wow Frogga, that is some story. I read every word: it's poignant, and you tell it so eloquently. You must be a very strong girl. I don't know that I was ever that strong, but certainly I know I wasn't at age 21. You are special.

Please keep telling your story. It speaks of horrible pain, but of hope for having a life despite the pain. That is what I strive for, and try to speak about. I too have RSD, have had it for 15 years. I have started a blog (I know, so has everyone else) to try to help people who haven't found the peace in their pain that you have. Not to say we're Pollyannas, I'm sure you have your bad days, I know I do, but we try to move forward anyway. That's what it's all about (and good for your mum for instilling that in you), moving forward - even if you take baby steps, keep moving forward. Or else you get stuck looking backwards at all the things that you CAN'T do, instead of focusing on what you CAN do.

Anyway, I'm very impressed.**. I SO want to help even just one person not sink into the depression that I did.

I hope to hear from you,

Judy

CRPSbe
05-13-2009, 01:07 PM
Welcome Judy. I have RSD for almost 15 years too. Where can we read your blog?

Miz Lizzie
05-13-2009, 04:32 PM
Feel free to post your story, your RSD history, or an introduction to the forum members.

Welcome to the RSD/CRPS forum.

Hello out there! I was just diagnosed with CRPS a week and a half ago. I live in the great Pacific NW also!! So thankful to find an active site. I am sort of going crazy trying to find out everything I can and mostly what is normal and what isn't.
I also have fibromyalgia and systemic lupus, but the lupus has been quiet lately (thankfully).
I fell off my bicycle last September and hurt my foot. It just never got better and in fact is worse. Had multiple MRI's and x-rays but they couldn't find anything broken, just soft tissue swelling and inflammation. I'm relieved to have a diagnosis, but not necessarily happy with it ;)
The area is my left foot/ankle, but it seems to be spreading up my leg. The swelling is awful and the tenderness is exquisite. My doc put me on Celebrex which is helping with the pain, but still get shooters and lots of burning, aching type pain. I go back to the doc tomorrow to see what is next. This is not fun and I'm ready to quit playing.
Miz Lizzie aka Queen Foothurtsalot

angelrsd
05-13-2009, 10:41 PM
lizzie

wanted to welcome you and come down and join any time you feel like it. ask away.. i ahev had full body RSd for 11 yrs..
im sorry that we had to meet this way..

come down and join the crowd.
ask anything and everything.. there are alot of great people here

welcome again

carrie

CRPSbe
05-14-2009, 09:34 AM
Welcome Lizzie!

Miz Lizzie
05-14-2009, 10:53 AM
lizzie

wanted to welcome you and come down and join any time you feel like it. ask away.. i ahev had full body RSd for 11 yrs..
im sorry that we had to meet this way..

come down and join the crowd.
ask anything and everything.. there are alot of great people here

welcome again

carrie

Thank you! Was wondering if anyone has experienced a light rash that hurts like a horrible bruise. Pain and swelling seem to be moving up my leg also. This sucks - sorry, had a fitful night without much sleep. I can't even imagine having this full body. You must be very strong.
Lizzie

Jeanninemm
05-20-2009, 02:02 PM
Hi,
My name is Jeannine...Im 51 and was injured at work on June 24th 2008...I was diagnosed in November with RSD...Right now I am home again after a nasty flare up...ugh.. This whole experience started when I was coming down the steps after punching in and somehow, God knows, I missed a step and landed on my left foot and ankle, twisting the ankle inward and landing on it....As time goes on Ill tell more about my experence so far with this crappy thing that ruined my life ...I am on Lyrica...300 mg 2xdaily and right now on another Predisone pack and hydrocodone with Apap..I have been on Lexapro for quite awhile, so no other antidepressents were needed...anyhow, if you all would not mind me looking around this site for awhile, Im learning so much, Ill leave more messages...sorry for rambling and any typos, as either the Lyrica or the RSD has left me a bit scatter brained ...
Thanks,
Jeannine

CRPSbe
05-21-2009, 06:38 AM
Welcome Jeannine!

Jo*mar
05-21-2009, 11:37 AM
Be sure to post on the main RSD forum also - sometimes a single post here may not get noticed right away.

Main RSD forum -
http://neurotalk.psychcentral.com/forum21.html

Julette
06-01-2009, 06:26 PM
Hi all
I have recentley been told I have RSD due to either Radiation treatment I had in 04 or carpol tunnel in both wrists,I have pain in my kneck shoulder arms and fingers, both hot and cold sensation in hands and fingers/arm and stiffness in my fingers. The Neuroligyst started me on low dosage of Gabapentin four days ago I am to call his office in two weeks to see how this is helping then see him two weeks later.
I am noticing a few strange things going on the other day I tried to shut a door but kept missing it eventually I shut it it took five attempts I kept miss judging were the door was, has anyone else had these experences, and when e-mailing I am missing some letters in the words I type I have to keep going over it I never had this problem the same is happening with my speach not getting words out the way they should be I hear my self saing the word wrong but to late gone and said it I asked my son if he wanted some peckers instead of peppers that kind of thing not all the time just some.
Thanks for any help you all can give to me.

Julette
06-01-2009, 06:54 PM
hi all. i'm angie... i just turned 33 - wife of josh and mom of 3: talley (girl, 7), london (boy, 5) and scout (girl, 3).i was diagnosed with RSD about 3 days ago. i had shoulder surgery in march and had constant pain afterwards. the pain meds wouldn't work and i finally had a face-to-face with my doc about the pain that was burning a hole thru me! i had an x-ray and an MRI that showed the surgery was a success, but the pain said something different. i also had a purple hand and cold and numb fingers.

she told me i had RSD and sent me up to the pain clinic. the doc there said he didn't know... said 50/50 chance, but that he wanted to do blood work, a bone density scan and a shot in the neck. he said if the shot worked then he knew what it was.

well, i had the shot and it worked. i left the office without any mention of doing any other tests.

i'm really scared. i have a loving husband, but he doesn't understand how much pain i am in and thinks i just want attention. i am a very, very active person. i love any kind of sport and just play till my body stops. i'm scared that this is going to take over my life! i have been forgetting things. i have been talking strangely - i will start a sentence and then start the sentence over after saying the first 3 words like... i have to i have to go to the store.

can you guys relate to this?

i'm glad i found this forum.

ang

Hi Angie
Yes I too have this happen and then somtimes forget what the word is for something I asked my son to get his wash basket but got as far as wash in the end I just pointed to it and he said wash basket its very frustrating and then I dont say the word right like saying pecker for peppers that kind of thing. I have only recentley been told I have RSD so very knew to me. Like you I have pain and stiffness in my fingers and it must seem to my husband that Im going on a bit about this that and trying to find out what its all about and how it affects me, it seems like everytime he walks past Im on the computer doing research I just hope he doesnt get fed-up with me talking about it. I also have the pain in shoulder and arm hands/fingers with both heat and cold and tinling in hands I drop things alot and loss of strengh in arms and hands for me this could have been caused with having Radiation treatment for Cancer in 04 or that I have carpul tunnel in both wrists not sure which. I have not had anything go purple in colour but have read that this can happen its really frightning to know some of the terrible affects this can have on your body.

ndsrsd
06-02-2009, 09:52 PM
Hi Diane,

I am newly diagnosed with RSD and new the the area where I live in NJ. I have had NO luck finding a primary care Dr. who will listen and is interested in helping me piece this together. I have been to neurologists, neuro-surgeous, pyschiatrists, pain management, ............. I leave their offices in pain, begging for help, to no avail. I can't find a single Dr. lead alone a team to work with me. It's been 11 months, I have had no therapy, I feel like I am being lead in circles and I am afraid the longer I wait the more progressive my pain/damage will get.

What types of Dr.s do you see? What are their philosophies? My current pain management guy takes an "anesthesia-based approach." He does nerve blocks, epidorals...but that seems to be about it. I have exhausted my brain to find help. I feel so desperate and I haven't a clue how to begin to find someone I trust that can help lead me in the right direction.

I would appreciate any ideas about types pf Dr.s, their philosophies, drugs, therapies, etc...

I have RSD in my foot/calf/lef from herniated disks/back surgeries.

Thank you!

Hi,
My name is Diane, I have been diagnosed with RSD since 2/2002. I fell in the parking lot at work and broke both the tib/fib 2" above my ankle in my left leg. I had surgery to repair the damage-2 plates, 19 screws. 1 screw was thru both bones as the tendon that holds the bones over the joint was compromised. I had another surgery 3 months later to remove that 1 screw, then in Oct 2002, they took the remaining hardware out thinking that would resolve the pain. Guess what.. it didnt!

I was finally diagnosed with RSD and have been trying to find a way to live with it and work with it. It has been increasingly more difficult to work the 40 hours I am restricted to. No ot no weekends.
My medicine regime has constantly changed to try to control the pain. So far, it is from my mid calf down to the tips of my toes. I believe it is beginning to crawl up my leg to my knee as I have burning pain more prevelant at night in that area now.

Luckily, I have had wonderful QRC's and doctors. I was diagnosed about a year and half after the accident. I am looking foward to participating in this chat area for both support, laughs, direction, and anything else anyone can provide that will help living with this much easier.

My family doesnt quite understand. My grown children are concerned about the amount of medicine I am taking, but my oldest son (28) attended my last doc appt and seemed satisfied with what he heard. (He lives in Italy and was finally home for a visit so he was able to go with me finally). My youngest son (25) still gives me some grief about the meds. It is difficult to explain this to someone that loves you and hates to see you like this. Hopefully one day, my youngest will be able to go to the doc with me as he is my emeregency contact should anything happen too me. My mom, well, she hears news stories about the meds I am on and calls me thinking that I am going to die any day if I dont get off these meds--but somehow I seem to calm her down letting her know that I try to keep on top of all the medical information about this as I can.

I am looking forward to gaining more info and sharing what I know if I can.:icon_wink:

lexiemae1
06-03-2009, 12:47 AM
Hello out there! I was just diagnosed with CRPS a week and a half ago. I live in the great Pacific NW also!! So thankful to find an active site. I am sort of going crazy trying to find out everything I can and mostly what is normal and what isn't.
I also have fibromyalgia and systemic lupus, but the lupus has been quiet lately (thankfully).
I fell off my bicycle last September and hurt my foot. It just never got better and in fact is worse. Had multiple MRI's and x-rays but they couldn't find anything broken, just soft tissue swelling and inflammation. I'm relieved to have a diagnosis, but not necessarily happy with it ;)
The area is my left foot/ankle, but it seems to be spreading up my leg. The swelling is awful and the tenderness is exquisite. My doc put me on Celebrex which is helping with the pain, but still get shooters and lots of burning, aching type pain. I go back to the doc tomorrow to see what is next. This is not fun and I'm ready to quit playing.
Miz Lizzie aka Queen Foothurtsalot I have only been dx'd about 7 months ago, so feel free to ask anything and If we know or think we may know< we will answer u!! Have a good day!1:eek::hug:

denise18
06-12-2009, 12:25 AM
Jacqueline, We have some thngs in common. I had tos surgery w/ sympanthectomy 20 yrs. ago , for 15 yrs I called the rsd "my nerve damage" The surgery gave me back the use of my arm and alot of the pain was gone. I had other injuries that kept me "couch ridden" for several yrs. I have dealt with alot of your symptoms and have gotten relief with some and learned to live with others. Did you have surgery under both arms? Do you sweat at all? Do you do any jerking?I also had problems with PT and different exercises I've tried over the years. Scar tissue can be a huge side effect that effects everyone different and cause it's own problems. The best thing I did was see a massage therapist. She was very experienced and had a school. She taught me more about my body than anyone. We end up with scar tissue simular to someone who has had a mastectomy. between the frozen muscles(neck back right leg) and s car tissue I had alot of spasms, pain, jerking, toxin build up. you also get referred pain ( a tight muscle pinches a nerve causing something else to hurt) I saw her 3 times aweek for several years. It was painful and I was nauseated afterwards( release of toxins) i even drained thru a place in my back and one in my arm. My body couldn't get rid of all the toxins. It was months before I would let her touch my arm and I cried alot but I got better. The other thing I did was see a chiropractor she recommended .Someone on here spoke about using an applicator or what they call the "grostic technique". I was shocked the jerking I had done for 4 yrs almost completely stopped, my colon , interstitual cytistist( i didn't know alot of people had problems with this) back spasms were greatly improved. I have run out of room. email me Would love to talk of skins problelms Denise

crpslouisa
07-03-2009, 12:56 PM
Hello all,

Here is a short version of my story. I had knee surgery 10/07, long painful recovery not going as well as anyone had hoped finally diagnosed with CRPS 01/09. Have been going for treatment since then hoping for the best also learning as much as I can. One of the most difficult part for me thus far is family who do not comprehend my pain therefore are not very supportive. Luckily my Mother and Step Father have been amazingly supportive to me. My Mother is who actually found this site for me! I have already read through the survival kit thread, found it very helpful. Wish you all a pain free holiday weekend! :hug:

Jimking
07-06-2009, 09:38 AM
Hello all,

Here is a short version of my story. I had knee surgery 10/07, long painful recovery not going as well as anyone had hoped finally diagnosed with CRPS 01/09. Have been going for treatment since then hoping for the best also learning as much as I can. One of the most difficult part for me thus far is family who do not comprehend my pain therefore are not very supportive. Luckily my Mother and Step Father have been amazingly supportive to me. My Mother is who actually found this site for me! I have already read through the survival kit thread, found it very helpful. Wish you all a pain free holiday weekend! :hug:
Welcome crpslouisa! You are not alone in dealing with family who doesn't understand. My wife has RSD and it the oldest of 8 siblings. Only one out of the bunch keeps in contact with my wife. All I can say is flood them with as much information about RSD as you can.

heartbeatmom
07-07-2009, 10:07 PM
I'm new here....on my birthday last summer I was holding a ladder for my hubby to trim a split tree limb hanging over our power lines...bad idea. He fell off the ladder and as I worried about him getting hurt, I held the ladder as long as I could...it finally came down and with a crack it hit my anke knocking me to the ground. I knew I was hurt badly...and on my birthday. This wasnt an regular ladder, it's one of those metal extension ladders. So, I got up and hobble into the house, knowing it was bad. I refused treamtent that day and went out for lunch carrying an icepack with me. The next morning I couldnt stand. Went to the urgicare, they took an xray and put me in a aircast. It wasnt better in the week they said it would be, went back they knew something was differant. Send me to an ortho and he said it looked terrible...nice hu? He sat over me, pulled off the air cast and said. THAT'S NOT GOOD...just what you want to hear. He couldnt touch the bruised area it was like he was ripping my skin off. He mentioned RSD and said to goto PT...went to PT and for a week and a half was in horrible pain at the hands of the therapist. She knew something was wrong, sent me back to the doctor and they ordered an MRI, it showed a torn tendon...great. This time it's now about 3 months after the injury. Went to a new foot surgeon, he was nice. He first thought RSD but said he needed to fix the tendon, I had a special brace made to get me through the holidays and then have surgery. I did, woke up in the recovery room in horrible pain. the nurse said it wasnt possible he injected my ankle with something to block the pain...I ended up getting morphine and was still in pain...well got sent home. This was just a surgery center and not a hosptial. I got home with my cast on and was just feeling like I wanted to die. Hubby couldnt understand why i hurt so much, why the pain meds didnt help...I couldnt put my foot down without crying. Well came time to cut my cast off and I told the doc it felt like my skin was tearing off my ankle...it wasnt the tendon, it was RSD. So, I rehab from that, in a wheel chair since I cant walk. Finally i was sent to see a nureologist who did a nerve test to diagnos RSD, great. HE refers me to the Cleveland Clinic Pain center...now I am currently having these nerve blocks that seem to basically do nothing....I am at the end of my line. I just dont know how much more I can take.

thanks for listening.

Jimking
07-08-2009, 08:12 AM
Hang in there heartbeatmom! The Cleveland clinic has a good reputation, I believe. If I were you I'd look into Ketamine infusions. Since you are in the early stages of RSD the infusions may help you and possibly put you into a remission. The earlier the better.

CRPSbe
07-08-2009, 01:11 PM
Welcome to the boards, heartbeatmom! I am so sorry that you went through this and are going through this, but please hang in there. We know what it is and we're all here for you if you need us!

heartbeatmom
07-08-2009, 07:38 PM
thanks.:)

i have never heard of Ketamine infusions...what are those? I am having the lumar injections with no relief. I was injured last august and it's been a nightmare ever since.:(

Jimking
07-09-2009, 10:05 AM
thanks.:)

i have never heard of Ketamine infusions...what are those? I am having the lumar injections with no relief. I was injured last august and it's been a nightmare ever since.:(

heartbeatmom, here are several links that will explain. :)
http://www.rsdhope.org/ShowPage.asp?PAGE_ID=82
http://www.rsdhealthcare.org/index.html
http://www.rsdfoundation.org/en/Ketamine_Treatment.html
http://www.rsdhope.org/Showpage.asp?PAGE_ID=161&PGCT_ID=4210
http://www.rsds.org/3/treatment/ketamine.html

nancyinLA
07-10-2009, 04:33 PM
Hi,
My name is Diane, I have been diagnosed with RSD since 2/2002. I fell in the parking lot at work and broke both the tib/fib 2" above my ankle in my left leg. I had surgery to repair the damage-2 plates, 19 screws. 1 screw was thru both bones as the tendon that holds the bones over the joint was compromised. I had another surgery 3 months later to remove that 1 screw, then in Oct 2002, they took the remaining hardware out thinking that would resolve the pain. Guess what.. it didnt!

I was finally diagnosed with RSD and have been trying to find a way to live with it and work with it. It has been increasingly more difficult to work the 40 hours I am restricted to. No ot no weekends.
My medicine regime has constantly changed to try to control the pain. So far, it is from my mid calf down to the tips of my toes. I believe it is beginning to crawl up my leg to my knee as I have burning pain more prevelant at night in that area now.

Luckily, I have had wonderful QRC's and doctors. I was diagnosed about a year and half after the accident. I am looking foward to participating in this chat area for both support, laughs, direction, and anything else anyone can provide that will help living with this much easier.

My family doesnt quite understand. My grown children are concerned about the amount of medicine I am taking, but my oldest son (28) attended my last doc appt and seemed satisfied with what he heard. (He lives in Italy and was finally home for a visit so he was able to go with me finally). My youngest son (25) still gives me some grief about the meds. It is difficult to explain this to someone that loves you and hates to see you like this. Hopefully one day, my youngest will be able to go to the doc with me as he is my emeregency contact should anything happen too me. My mom, well, she hears news stories about the meds I am on and calls me thinking that I am going to die any day if I dont get off these meds--but somehow I seem to calm her down letting her know that I try to keep on top of all the medical information about this as I can.

I am looking forward to gaining more info and sharing what I know if I can.:icon_wink:


i, too, fell at wk in 4/08 & broke left wrist. came out of cast w/RSD. i see a PM dr, psychologist, OT ea. wk, orthoped. - & neurologist, as i have epilepsy, too! the "mess" has crept up my arm 2 shoulder 2 left should. blade! i take 1500mg neurontin, celebrex (hurts 2 type), & all my seizure meds. just saw my foot dr today as i thought my plantar fasc. was acting up...... oh no, he thinks it's worse than that! burning pain & knife pain in foot - all of the left foot. i know my worker's comp is gonna die! i've been blessed, tho. i've been home over yr & receive my salary. my family is great - my husb. is an angel! i know God has a plan 4 me..... i try 2 think every day: if i get up & have a pulse, God has a purpose 4 me that day! hope u hang in there!

NJsteve
07-11-2009, 02:26 PM
Hello, my name is Steve and I have RSD from an ankle sprain a few years ago. I suffered the injury on the job, but my employer claimed they werent aware of this, so I was denied WC. I haven't worked since 11/2006, had to sell my home, and have spent nearly all my life savings. Worse yet, I have to live with my parents at 37 years of age.

nancyinLA
07-11-2009, 08:27 PM
Feel free to post your story, your RSD history, or an introduction to the forum members.

Welcome to the RSD/CRPS forum.

i fell at wk in 4/08 & broke left wrist. came out of cast w/RSD. i see a PM dr, psychologist, OT ea. wk, orthoped. - & neurologist, as i have epilepsy, too! the "mess" has crept up my arm 2 shoulder 2 left should. blade! i take 1500mg neurontin, celebrex (hurts 2 type), & all my seizure meds. just saw my foot dr today as i thought my plantar fasc. was acting up...... oh no, he thinks it's worse than that! burning pain & knife pain in foot - all of the left foot. i know my worker's comp is gonna die! i've been blessed, tho. i've been home over yr & receive my salary. my family is great - my husb. is an angel! i know God has a plan 4 me..... i try 2 think every day: if i get up & have a pulse, God has a purpose 4 me that day! hope all of u hang in there!

suz66
07-14-2009, 07:54 AM
On a reply to one of my threads, SBOWLING said that they went to Dr Schwartzman in Philly who is a RSD specialist. Don't know if that helps you, but there ya go. Take are and keep your chin up; we're here for you.

Hi - One of the worst things I have found with RSD is the non-support of medical professionals. It took 6 years for me to be diagnosed, test after test, attitude after attitude and finally confirmation. It started in my left hand/arm and face then moved to my right arm/hand. Both hands are effected now so I don't type long. But still, I am on 3 waiting lists for Ketamine (Any-one know a doctor?), one doctor will see me for 15k but he is far away and my current doctors say there is nothing they can do for me. Pain meds that barely touch the surface, no support and still a lot of attitude. Talk with people, search for help and reach out that is all we can do! Unfortunately, I have found that we must find answers ourselves. Don't give up! I made up a saying long ago that I think all doctors should adhere to...."For a man/woman to truly see, they must look beyond their own ego":icon_wink:

SandyS
07-16-2009, 10:35 PM
Hi, My daughter is seeing Dr. Kirkpatrick in Tampa Florida, I got an appointment right away within a week and Ketamine infusions with in two weeks. The cost was $7500.00. He is the RSD Research Institute. RSD Foundation. They are located on Busch Blvd. Tampa, Florida.



Good luck to you,









Hi - One of the worst things I have found with RSD is the non-support of medical professionals. It took 6 years for me to be diagnosed, test after test, attitude after attitude and finally confirmation. It started in my left hand/arm and face then moved to my right arm/hand. Both hands are effected now so I don't type long. But still, I am on 3 waiting lists for Ketamine (Any-one know a doctor?), one doctor will see me for 15k but he is far away and my current doctors say there is nothing they can do for me. Pain meds that barely touch the surface, no support and still a lot of attitude. Talk with people, search for help and reach out that is all we can do! Unfortunately, I have found that we must find answers ourselves. Don't give up! I made up a saying long ago that I think all doctors should adhere to...."For a man/woman to truly see, they must look beyond their own ego":icon_wink:

cindi1965
07-19-2009, 01:47 PM
[FONT="Comic Sans MS"][/FONT
Hello,
I am new to the forum and am so happy that I have found it. I was diagnosed with RSD/CRPS a year ago after having a staph infection in my lower left leg. It is now spreading and I have been to doctor to doctor trying to get them to listen to me. I finally found a good pain management dr. and he doesn't take my insurance. There are very few doctors in my area that will honestly diagnose and treat this disorder. I don't know what to do.

I also was born with Cerebral Palsy that has effected both of my legs, so now I have a double whammy with the RSD. I just need someone who will listen and a place to sound off when I get down, because as a lot of sufferers know you can't always get the support of their families.

My family is suffering because I used to have 2 jobs and now I can barely take care of my house. My husband tries really hard to make it easier on me, but he misses the way I was before. He continues to be wonderful, but I would like to make friends on here who understand why I don't want certain material on my leg and arms, and why some days are good and some days are really bad.

Thanks for listening.:)

nancyinLA
07-21-2009, 10:55 PM
[FONT="Comic Sans MS"][/FONT
Hello,
I am new to the forum and am so happy that I have found it. I was diagnosed with RSD/CRPS a year ago after having a staph infection in my lower left leg. It is now spreading and I have been to doctor to doctor trying to get them to listen to me. I finally found a good pain management dr. and he doesn't take my insurance. There are very few doctors in my area that will honestly diagnose and treat this disorder. I don't know what to do.

I also was born with Cerebral Palsy that has effected both of my legs, so now I have a double whammy with the RSD. I just need someone who will listen and a place to sound off when I get down, because as a lot of sufferers know you can't always get the support of their families.

My family is suffering because I used to have 2 jobs and now I can barely take care of my house. My husband tries really hard to make it easier on me, but he misses the way I was before. He continues to be wonderful, but I would like to make friends on here who understand why I don't want certain material on my leg and arms, and why some days are good and some days are really bad.

Thanks for listening.:)

welcome to the forum! i've had this horrible mess 4 a yr now. i know how u feel & understand the good days & bad days!! r u on meds? i take 1500mg of neurontin/day plus meds 4 epilepsy. it's good 2 have so many friends that understand...... b strong - take care! :grouphug:

hutch
07-26-2009, 08:29 PM
I've commented some before. I'll fill in some details. First though, I want to say I'm so glad to find this site. I've had "the beast" for over 5 yrs but have never met anyone else with it. I'm hoping to get a chance to ask some of you more questions.

I was just leaving work on a Fri evening when a large room divider fell on me, trapping me under it. I'd seen it coming & "blocked it" from hitting my face with my right hand. Thought I'd broken several bones at 1st. Finally someone heard me yelling & pulled it off. My hand/wrist felt sprained, & my neck felt a little sprained. But within a couple of weeks (I kept working) I felt like monsters were attacking my right arm, hand, shoulder & neck.

I was sent to an Orthopedic Hand Specialist, who just shrugged when I showed him my swollen, deep blue hand & asked what it was. Even though my employer was furious that I never go a diagnosis, I kept going to this doctor (maybe I got hit in the head, too! :confused: ).

I had a torn ulnar nerve he said, & he put me in a splint & sent me for PT, too. The physical therapist kept saying something was "really wrong" with my shoulder, but the "hand specialist doc" just put off the MRI.

Two yrs later I got an MRI on my own & they found multiple torn ligaments, etc, etc. Fortunately I'd been seeing a Chiro who was GREAT with elbows & shoulders who kept it loose.

After the MRI diagnoses WC switched me to an Orhtopedic who was a "Shoulder Surgery" specialist. I told him I wanted to try injections before surgery & he went along with me (thank God!), because after 2 injections I could barely function due to the pain. I cried at work in the bathroom. That's when they told me I had RSD. Thankfully we didn't go straight for the surgery!

It took about another 8 months before WC would approve me for SGB's. But they worked fantastically when I finally did get them (total of 6).

My injury was in Aug 2001, and in 2002 I started having burning on the bottom of my feet. It slowly moved up my legs. They both now burn to just above my knees. I don't know if this is RSD or not. And, since WC only authorizes my doctors to look at my arms/hands (they've acknowledged it's moved into my left arm too, but not nearly as severe as right), the doctos just sort of change the subject when I ask what the pain is in my feet and legs.

Maybe someone has had a similar experience.

After I went to an Agreed Med Exam last Feb, not knowing 18 months of my medical records were not sent to him, he P&S'd me, so I have had to live on $720 a month "advances" from any settlement. I'm in dire financial straights! I've had to "live" on my credit card, now I can't afford the minimum & was on the phone arranging stuff with them today. But something always works out! I just thought my settlement would come through at least 6 months ago!

I live in a guest house that's just perfect, even though my family are all far, far, away. My landlords are my friends, & let me go without rent a month or two, even though they've had problems. But they just got a notice that their house is in foreclosure!! I feel so bad for them. So I'm trying to arrange to move....somewhere. I have about $75 to pay toward rent these days. So, I shouldn't have any problem, right? :D

If I didn't hurt so much & feel so tired, I'd dress up & go see if I could find a "Knight in Shining Armor"!! :)

I love to laugh, that's why I love reading some of the stuff on this site. You funny guys, KEEP IT UP PLEASE!

The way I try to look at it is that my life is kind of an adventure right now! I'm praying & waiting to see what opens up!

Take care all you precious people!

Denise

I am so sorry you are dealing with all that. I got rsd 2 yrs ago following surgery on my thumb. I could not believe how painful it was. I received nerve blocks for a few months and physical therapy. The blocks worked at first, then it stopped working. The pain doctor suggested a Vagus nerve stimulator but another doctor told me I was not a candidate for this. I continued physical therapy with great relief. It all but resolved. I had some residual stiffness, and could not quite close my right hand all the way---but was tolerable. I had surgery on my left hand in March, although I was very worried about rsd, I did fine. It is taking my left hand longer to recover then expected, for some reason. I have cervical dystonia and had my second treatment of botox on July 10th. During these injections he had doubled the botox amount because it wasn't enough last time. He puts most of my shots on my left side---(neck and upper back muscles). This last time he also gave me some shots in my right side of my neck. That evening My right hand started feeling like my rsd was coming back. It was better in a few days, but now hurts when I use it?? does it return? could it of been brought on by my botox shots?? I have it slightly in my left hand, and a get alot of burning in my feet, and a swollen feeling, which comes and goes??? Have you or anyone had a recurrence of symptoms like this?? I also have many other neuro problems, so I am not sure what is what. I have not seen a doctor about these new episodes and I am thinking that I should. I am just soooo tired of going to the doctors for another problem!?? If you or anyone has insight to any of this please let me know. I hope that your situation improves for you sooon. Take good care----hutch

maryam71
07-29-2009, 07:32 PM
Just diagnosed 6 months ago, not much support or experience for the medical community in the area where I live.

i was diagnosed 2months ago i had surgery on my foot for servere tendinitis i agreed to have the surgery but i never thought it would turn out to be this way 3 days after surgery the doc said you have rsd and all he could say is he is sorry i really dont know when i will be able to wear a shoe again.my calf muscle has waisted away it very weak there are days when i cry myself to sleep at night i really dont know when i will be able to go back to work i really need to research more rsd from what i read on the internet there is no cure for rsd i dont believe i can live with this i hope and pray there is a cure :hug:

Jimking
07-30-2009, 12:47 PM
i was diagnosed 2months ago i had surgery on my foot for servere tendinitis i agreed to have the surgery but i never thought it would turn out to be this way 3 days after surgery the doc said you have rsd and all he could say is he is sorry i really dont know when i will be able to wear a shoe again.my calf muscle has waisted away it very weak there are days when i cry myself to sleep at night i really dont know when i will be able to go back to work i really need to research more rsd from what i read on the internet there is no cure for rsd i dont believe i can live with this i hope and pray there is a cure :hug:

Welcome maryam, very sorry about the diagnoses. When you do your research look closely at ketamine infusions. This may be the way for you to go since you are in the early stages in which this procedure has had good results. Get as many friends and family to help you and move as fast as you can manage.
ttp://rsdhealthcare.org/Institute_Announcement.html

nancyinLA
08-01-2009, 06:54 PM
i was diagnosed 2months ago i had surgery on my foot for servere tendinitis i agreed to have the surgery but i never thought it would turn out to be this way 3 days after surgery the doc said you have rsd and all he could say is he is sorry i really dont know when i will be able to wear a shoe again.my calf muscle has waisted away it very weak there are days when i cry myself to sleep at night i really dont know when i will be able to go back to work i really need to research more rsd from what i read on the internet there is no cure for rsd i dont believe i can live with this i hope and pray there is a cure :hug:

so sorry ur so miserable. u have joined a great support group! i've been diagn for 15 mos. now. i think there's control - maybe remission - & not complete cure! everyone has great advice...we've all "been there kinda thing"! my prayers r w/u. get a good dr., helpful meds & depend on God! :hug:

Dubious
08-01-2009, 10:48 PM
i was diagnosed 2months ago i had surgery on my foot for servere tendinitis i agreed to have the surgery but i never thought it would turn out to be this way 3 days after surgery the doc said you have rsd and all he could say is he is sorry i really dont know when i will be able to wear a shoe again.my calf muscle has waisted away it very weak there are days when i cry myself to sleep at night i really dont know when i will be able to go back to work i really need to research more rsd from what i read on the internet there is no cure for rsd i dont believe i can live with this i hope and pray there is a cure :hug:

Maryam71,

Don't take this laying down! If you have not done so already, get aggressive with persuing pain managment; blocks , meds and whatever else you can grab. You are in the golden zone where you at least have a fighting chance to attack this! After a few months, it may be too late to do much other than play catch-up...

abbyfish1
08-03-2009, 05:02 PM
i donated blood two days ago, and the tech/med assistant (positively) hit a nerve. :(the bag was filling up fine but by almost the end, she said that the it was running a little bit slow and decided to move the needle to somehow facilitate faster blood flow. as she moved the needle, i felt electricity running down my arm to my fingers,i said it hurt then she let go (with the needle still attached). she asked me if the pain is gone, i said somehow just dont touch it and just let the bag finish up. as soon as the bag got filled up, i guess, she was scared so another tech took her place removing the needle and bandaging me. anyway, i went home (sore with intermittent jolt depending on my arm positioning) but i ignored it. i just thought that it's no big deal and that it'll go away. the blood draw was done on my right arm, too, which makes it worse since now i can't even lift a spoon to eat with my right arm. well, it's been two days and the pain seemed to have increased. im sorry to sound a little too concerned being that it has only been almost 3 days and that i've read a number of posts here of people suffering for years. but i am really worried. i have no insurance at the moment. am still in school studying to be a nurse. i am afraid that this might be of a bigger problem to me later on. :confused:are there ways to help alleviate the pain? will movements on the affected right arm cause further damage (i am right handed)? any help is greatly appreciated...(especially cause just typing this took me about 20 minutes with my left hand):hug:

Tosha
08-03-2009, 09:42 PM
Hi. I am new to this site and was just diagnosed with rsd/crps. I was at work and went into a quick squat (and they always say exercise is good for u...hahaha) and tore my popliteus muscle (muscle behind the knee) and tore a ligament in my ankle (inside portion) which I didn't find until 3 months after the injury. My foot and leg filled with blood and fluid, which in turn damaged my nerves. Anyway, I came out of the fluid left with rsd/crps of my right foot. I have been going to therapy and now going on the 5th month, am not sure if this is going away. I've been reading eveything that I can read on this and it seems that no certain regimen is a protocol for everyone dealing with this horrible beast. I'm now starting to feel weakness and pain going up my leg, not sure if that is the symptom of spreading or not???? Not sure what to do or where to go from here. Trying to get some blocks and go do more therapy. Anyway, I'm trying to read all of ur stories (which give me some hope) but it's hard to retain all the information because I have so much on my mind....very nice to meet u all and hope all get a break from the pain. Thanks!

bsfosdick
08-14-2009, 02:50 PM
Hi! I'm so glad to find a place to communicate to other RSD Patients. I developed RSD after an elective foot surgery, & suffered thru bilateral pain, bur, crushing sensations for 5 yrs..always watching the internet, & chasing down the doctors working with the ketamine infusin treatments. I was treated at Drexel Univ by Dr Schwartzman in a 5 day in house infusion, with the pain disappearing after 6hr of the infusion starting. The pain was gone for 9 months, during which time I received the protocal for outpaient boosters from a San Diego MD,anesthesiologist, at his outpatient surgery unit. The good news is that I got him started on setting up this program here on the west coast, and he has set up the billing with insurance companies to have it covered. Yeah!!! I'm sure there are many patients that are ready to try this treatment instead of going on with their high doses of opiods, steroids, epidurals, morphine pumps, back pain stimulators etc...all of which end up failing & causing worse problems. I hope many of you will look into the ketamine infusion success stories..there are many good articles at RSDSA.org. Good luck..I hope I can help anyone!!!858-547-9991...Barb:grouphug:

CRPSbe
08-15-2009, 10:43 AM
The good news is that I got him started on setting up this program here on the west coast, and he has set up the billing with insurance companies to have it covered. Yeah!!! I'm sure there are many patients that are ready to try this treatment instead of going on with their high doses of opiods, steroids, epidurals, morphine pumps, back pain stimulators etc...all of which end up failing & causing worse problems. I hope many of you will look into the ketamine infusion success stories..there are many good articles at RSDSA.org. Good luck..I hope I can help anyone!!!858-547-9991...Barb:grouphug:


Barb,

It's great you were able to do something for other patients. However... with RSD, you know it's not one size fits all. It's hard enough to find something that works for us as an individual, so I would certainly not generalize and say that Ketamine is THE one and only treatment and we should all try it. That's a very dangerous thing to say.

Kaybee
08-15-2009, 07:19 PM
I was diagnosed with rsd 3 1/2 years ago in my left arm. After 2 very painful years I slowly went into remission and was feeling great. I just had very minor surgery on my foot and I have a feeling it came back. I have very painful burning on my foot, but the opposite side of where they operated on. I think my doctor thinks I am crazy because he says I am not suppose to have any pain. I am going to wait a few days but my foot is so sensitive that I can't even walk on it. Has this happened to anyone else? the pain is so intense.

My huband suffered a major chemical burn to his leg in 1995 - It was a work related injury. MSDS sheets were not available, he sat with this stuff on his leg for more then 24 hours. We watched the acid literally boil under his skin. It was a horrifying experience. We thought that was the worst of it until about a month later he was diagnosed with RSD. Then the real horror began. He fought for months and years through therapy, blocks, meds with horrible side effects....through lots of work and a pain clinic - a few years ago he was able to "control" the RSD. When I say "control" the RSD I mean he still delt with pain, but the RSD was not controlling him. We started to have a somewhat normal life again after years of suffering.


~ Our New Saga ~

Hubby found a job driving/transporting people (kind of like a taxi but for employees of a specific company) - Vehicle was set up decent for his leg (plus he now has brace) and driving did not effect his leg OVER ALL but there were days when he could not work and delt with pain, cramping and discomfort. He delt with it as best as he could as we have 3 children and he was always our primary wage earner, he felt if he did not do something he was not doing his job as a father and husband. (That male pride thing - Even though he suffered...)

After working this job for a year (some months putting on 10,000 miles or more) he developed ulnar nerve damage (your ulnar nerve is your "funny bone") in both arms. This vehicle he was working in did not have any ergo for his arms, thus the vibrations from the vehicle on roads and on "off road" areas like by railroad tracks and the long miles resting his arms on the side of the door and arm rest caused the casing around the nerve to be crushed around the nerve and there are also other areas of compression.

He was diagnosed with the Ulnar Nerve Damage in early April of this last year 2006 - They did physical therapy for months, tried braces, etc and finally had to resort to surgery (Ulnar Nerve Transposition)....They started with his right arm first.

We were told there was a 50/50 chance that he could develop RSD in his arm - But as hubby had another surgery (unrelated & approx 4 years ago) with great success we were looking forward to positive results and no RSD flare up.

We could not have been more wrong. Surgery took place in October and after a few weeks of therapy with little to no success - he was diagnosed with RSD in his right arm.

Needless to say all further surgeries have been put on hold (so he still has damage to his left elbow and both wrists...)

And here we go again...........

Hubby is currently on:

1.) Ibuproferen 800
2.) Hydrocodone 7.5 3x's daily
3.) Lyrica
4.) Cylexia
5.) Zanaflex (is that how it's spelled) for muscle spasms

He is in physical therapy 3 days a week too and we hope we can put this monster down again.

As far as our family goes, our oldest remembers the past RSD, and now hearing of a new "round", and also dealing with dads ulnar nerve damage has been hard on him - Our youngest 2 did not really experience the early RSD but are trying their best to cope through this new round of medical problems and now RSD. I personally find comfort here and through research. I work (although it scares me some days to leave my husband alone while the kids are in school) for sanity and financial reasons. I come online and here as often as possible. Knowledge is power I say, we WILL find something to tame this beast.[/QUOTE]

Jimking
08-17-2009, 07:54 AM
Hi! I'm so glad to find a place to communicate to other RSD Patients. I developed RSD after an elective foot surgery, & suffered thru bilateral pain, bur, crushing sensations for 5 yrs..always watching the internet, & chasing down the doctors working with the ketamine infusin treatments. I was treated at Drexel Univ by Dr Schwartzman in a 5 day in house infusion, with the pain disappearing after 6hr of the infusion starting. The pain was gone for 9 months, during which time I received the protocal for outpaient boosters from a San Diego MD,anesthesiologist, at his outpatient surgery unit. The good news is that I got him started on setting up this program here on the west coast, and he has set up the billing with insurance companies to have it covered. Yeah!!! I'm sure there are many patients that are ready to try this treatment instead of going on with their high doses of opiods, steroids, epidurals, morphine pumps, back pain stimulators etc...all of which end up failing & causing worse problems. I hope many of you will look into the ketamine infusion success stories..there are many good articles at RSDSA.org. Good luck..I hope I can help anyone!!!858-547-9991...Barb:grouphug:
My wife received ketamine infusions with no relief. As stated it works for some not others. I do believe if one was to elect to receive infusions, earlier the better.
Kaybee, If I were you I'd would have your husband file for social security disability insurance ASAP. If he qualifies you'll have some income and medicare coverage and if he's able to work in the future either full or part time he can, with a reduction in his monthly check.

yiisd
09-06-2009, 12:41 AM
I have suffered for 7 years with RSD. I have had numerous procedures, was in a Rehab Hospital for 3 months after a MVA that started this entire nightmare.

Here is my problem now: I have found a combination of medications that actually increases the quality of my life & makes life worth living. Problem is: The doctors (Pain Management, Neurologists, etc) are all afraid to write Rx for Morphine. My best pain relief and relief of the other irritating RSD symptoms comes from taking a maintenance dose of Morphine Sulfate EXTENDED RELEASE (MS CONTIN CR) The problem is, I can Not find a physician in the Houston, Texas area who is willing to at least see if this combination works.Here is the combination which MUST be kept to or you are wasting time:
Morphine Sulfate EXTENDED RELEASE (whatever dosage your MD wants to start you on - it can be changed easily enough)
Morphine Sulfate IMMEDIATE RELEASE (for Breakthrough Pain)
An Anti-Seizure Medication - I take Klonopin 1mg BID
An Anti-Spasmotic Medication - I take Flexeril - but you must build up a level & keep that level in your body or it will not work.
An Anti-Inflammatory Medication - I take Lodine 400mg. It is reasonably priced and works.
I also try to keep Phenergan tablets on hand. IF I let my pain get out of control, Phenergan is the only thing that will control my vomiting & prevent me from passing out.

This Works - or at least for me! BUT ... I CAN NOT FIND A DOCTOR IN THE HOUSTON / GALVESTON AREA WILLING TO WORK WITH ME IN WRITING THE SCRIPTS. AND MY DOSES ARE NOT EVEN LARGE!
ANY HELP???
DOES ANYONE KNOW OF A PAIN MANAGEMENT PHYSICIAN WHO WILL ACTUALLY LISTEN TO THEIR PATIENT & HELP THEM WITH RXs AND NOT JUST WANT TO IMPLANT PUMPS & NERVE STIMULATORS? iF SO, PLEASE ANSWER THIS. I AM AT MY WITS END. THANK YOU.

yiisd
09-06-2009, 12:47 AM
Just diagnosed 6 months ago, not much support or experience for the medical community in the area where I live.
I've suffered from RSD for over 7 years. I am sorry to tell you physicians who are knowledgeable about RSD are far & few. Many "claim" to know about the condition - but they don't.
ONE BIG TIP I CAN TELL YOU & PLEASE BELIEVE IT: DOCTORS WILL LOOK YOU IN THE EYE AND SAY "NARCOTICS/OPIATES DO NOT WORK ON NERVE PAIN" That is WRONG! I could not function at all in the world without Morphine Extended Release. I use the extended release because I am NOT a drug addict wanting a quick rush from an Immediate Release Compound. I do have a prescription for Morphine Sulfate Immediate Release, but that is used only for Breakthrough pain. I hate to sound so gloomy, but it is a tough road ahead of you if you have only had 6 months of this. My best advice - find a physician who is willing to LISTEN TO WHAT YOU THINK WORKS BEST (after trial Rxs) AND STICK TO WHAT YOU KNOW HELPS. DO NOT LET THEM SHAME YOU INTO THINKING YOU ARE A DRUG ABUSER FOR WANTING A NARCOTIC TO HELP YOU LIVE A SOMEWHAT NORMAL LIFE STYLE.
GOOD LUCK!

Gerrimondo
09-24-2009, 05:23 PM
I am so pleased to have found this forum. I was diagnosed by my GP after visiting 2 other GP's in the Practice and an A & E Dr. So 3 months after first seeking help, I'm eventually on my way with a brilliant GP who has a great sense of humour but cares about getting me the best treatment.

The CRPS started in left toes and foot and has now spread to the left knee. I went today and told the GP that my knee was now painful after walking leisurely for an hour the other day, she advised that it might just be that the CRPS spreading unfortunately. She referred me for an Xray straight away and booked me an appointment to see a consultant in a private hospital through the NHS, I had an appointment for 8 weeks and asked if I should cancel it and she said no as I might want to get a second opinion.

I had never heard of the syndrome before the diagosis and was actually quite pleased once the GP told me what I had as I had started thinking that it was all in my head! Now that I have read more about it, I am starting to worry. Not a lot of people know about it and I am really glad to have found fellow RSD/ CRPSers, thank you all,

Gerrimondo

ouellem
09-27-2009, 09:32 AM
After a simple slip and fall in Dec. 08 resulting in a sprained ankle and a long winter of unexplained pain I was finally diagnosed with RSD in June. At this point it is limited to my left foot. I have undergone 5 Sympathetic Nerve Blocks with short term success. I am now scheduled for RFA in three days. After internet research I am getting some mixed feelings about this procedure. I am most concerned about being able to work afterwards. I am an elementary school teacher and being off work is more trouble than actually being there. Anybody have any post-procedure information?

momzpeachy
09-28-2009, 07:37 AM
Hi everyone

I was recently diagnosed with RSD. It was in June that the Doctor's finally figured out what is wrong with me. I had a major flare going on and was a real mess. I ended up going to the ER down in philly (Hahnemann Hospital) because my neurosurgeon who performed my spine surgery recommended I go there immediately. Once there, i was greeted by the neurosurgeon team and they called in Neurology. I didn't even see the ER Doctor. I saw only specialists who decided to admit me for 4 days. They ran every test under the son. I was seen by Doctor's all day, every day. I was then seen by Dr. Schwartzman in ground rounds in the auditorium of the hospital in front of about 50+ Doctor's. I was basically put on display and Dr Schwartzman examined me in front of them all. They then discussed my case to come up with a diagnosis. It was CRPS/RSD. I was discharged to then see Neurology and they discussed Ketamine treatment. I have been to hell and back the last couple years. This all started wtih a work related injury...a repetitive strain injury caused by sitting at a desk keyboarding all day. I was diagnosed with thoracic outlet syndrome in January 2007. It then escalated from there. I had a scalenectomy for the TOS in January of 2008 after all treatments failed and I just got worse and worse. 5 months later I was back in the hospital with spinal cord compression due to herniated discs in my thoracic spine. Had surgery for that. Then I went down hill from there. I have been dealing with alot. I hate all of this. It's very frustrating. My life was taken away. I was such an active person before all this.

I have 3 teenagers and lots of stress which doesn't help. I do have a blog that gives more of my story and updates on everything. Please feel free to check it out.

http://updatesbytammy.blogspot.com/

I'm glad this forum is available. I have a hard time sitting and typing some days so I'm not always on but I will try to post when I can.

Take care!

DarlaDaniels
10-02-2009, 12:38 AM
This is so true. I do have to say that I have been on Morphine ER for years. Unfortunately, after many years I had to go off it because the nausea & constipation it caused was too severe. They switched me to OPana ER & for a year it worked well but then it quit working because my body had adapted to it. I am now back on Morphine ER but after only 2 weeks I am experiencing the same problems. I take Norco & Soma for breakthrough pain & I take them together. I found that the combination of the pain killer (Norco) & the muscle relaxer (Soma) is the best remedy. They work on both our main problems which is the pain & the constant muscle spasms from the nerve over-firing, which also cause the pain. The new doctor I have (after having to move to WA because my WC comp is 4 years + in with no end in sight & I couldn't afford to live on my own after not working for all this time)is horrible & unknowledgable about CRPS/RSD & has written down that he sees no signs & I am a chronic narcotics user. He has admitted that he knows little about the condition, knows no doctor to send me to & refuses to contact my former specialists in L.A. who had treated me for 4 years before I had to move. This is why I had to go back to Morphine, because he told me he doesn't know what to prescribe & I only could hope that going back to a drug that I used to have luck with. I am searching for doctors in Seattle now but it also means that I will have to drive 3 + hours over 2 mountian passes covered in harrowing snow & black ice once a month to get to them & god forbid I have a horrible flare & need a local doctor fast.
I guess I have got carried away ranting, but the bottom line was that for me, the short term opiates have worked best & I am in so much pain that I don't feel any rush, just relief. The long acting help alot, but also cause me other problems. What ever works for us is what we should be prescribed & I HAVE NEVER BEEN CALLED AN ADDICT UNTIL I MOVED HERE & HAD A DOCTOR WHO KNOWS NOTHING ABOUT IT & REFUSES TO LEARN. HE CALLED ME AN ADDICT IN MY RECORDS, NOT TO MY FACE OF COURSE, BUT ON PAPER. The fact that he has access to 4 + years of records by specialists in the field & reports from the 14 doctors whom have all diagnosed me with RSD & still had the nerve to call me an addict while admitting he doesn't know about the condition is deplorable, yet all too common for RSD patients. Sorry again for the long rant...I am just so furious with this kind of treatment & lack thereof that I had to get it out!

Gojo
10-03-2009, 03:51 AM
Hi everyone! I understand your pain as I have had CRPS type II for 8 years now. I have a pain pump implant with Dilaudid in it. I was on morphine since Nov. 2002 up until a couple weeks ago. My legs were red, burning and swollen badly with edema. It turns out for six months I have had an allergic reaction to the morphine. I thought I was having heart problems and it was causing a flare up that wouldn't quit. I couldn't afford to go see a doctor or pay for test. Then I started having minor chest pains so my brother took me to the hospital. The ER ran tests and took blood. The ER doc said he couldn't explain the edema because he couldn't find anything wrong with my heart. I felt like a fool. I went 2 weeks ago to have my pump refilled and showed the pain doc my legs and he said I was allergic to morphine. It turns out you can form a allergy to anything at anytime regardless of how long you been on it. After the Dilaudid was put in my pump my flare up became worse and then morphine withdrawals hit me. I'm finally doing better in general but tonight at 3am I sit here with my legs on fire and sit at my computer writing this. I just joined recently to this forum and more of my whole story can be found on my "about me" page.

I hate that any of us have to go through this. I lost my wife of 11 years to divorce along with everything else that I worked for my entire life because of this demon. I have good days and bad (like all of you). Today happens to be a bad one.
If anyone knows of a more active rsd forum please pm me with the url.
If you need someone to talk to (even if it's just to complain about the pain) feel free to email me or contact me on im. Thanks for listening.:hug:

justdeb
10-03-2009, 11:12 PM
Hi guys. I am new to the crps dx. (kids call it crap--lol) Anyways we assume that while in ICU in dec/jan and the severe bruising from use of the bp cuff to L arm continuously for that time is the probable "injury" that often preceeds the onset of the crps. At any rate.......I have been fussing for months at every one of my docs about the swelling and discomfort in that arm. Burning pains. Even a breeze from the fan caused pain. Very odd. My arm at the elbow had begun fixating as well as my hand. It was just written off essentially. No one addressing it. Then, about some weeks ago I went to hemo and had the arm wrapped. He of course inquired as to the reason, I told him about the pain and burning and swelling and discoloration from fingers to just below shoulder. The hand hurt so bad it felt like crushing pain to move the fingers. He ordered a series of xrays to wrist and hand and doppler study to ensure no clots were the cause. Both of course were negative. So things were dropped again. SIGH. I was telling a friend of mine about what was going on and she said oh that's RSD. HUH?? never heard that one before. Anyways she advised I see a specialist and have it looked into as the sooner the treatment begins the better the outcome. So I had my appt last Tuesday. The doc took a history and one look at my arm and said my goodness you have CRPS and a pretty bad case at that. She then ordered a tens unit lyrica topical analgesics and occupational therapy. She wanted to do the Stellate Gang block but I am on blood thinners and it is contraindicated. (but after my research for hours i have the idea that the concensus is that that part block has much to much negative attached to it) I am very blessed to have the doc I have. She is not into here take this narc and come back in a few months!! She beleives in aggressive early constant care to help effect the least amount of permanent disability.
I was a bit dismayed to learn of the poss of it cropping up in the other extremities though. It makes total sense from a physiology standpoint. However from a patient standpoint the idea that it could involve the other arm or a leg is daunting.
I also have MG and MS---so the level of disability is already high. I have been wc bound now for a few years. Without the elec chair I don't go. sigh. So adding to that disability by loss of the use of a limb is not a great idea at all.
The lyrica is a GREAT blessing. I started on one at bedtime and will add one in the morning this coming week. it really helps a lot with the pain/discomfort. The topical gel is not really adventageous at all. Didn't find ANY difference at all. The tens unit is great for the elbow/arm. Unfortunately it did nothing at all for the hand but irritate the wrist. So need to get with OT when she comes to the house Monday for our therapy and see if perhaps adjusting the lead placement more than I was willing to do without guidance will help. So I use it on the arm and not the hand.
Am concerned that the elbow is peeling and the new skin shiny as well as the nails being brittle and not growing. So i need to get those addressed next visit.
Well, I guess that is about all I have. I am looking forward to learning and sharing and suppporting each other here!!
Deb :grouphug:

ColoVet
10-07-2009, 01:36 AM
I'm a 56 year old disabled veteran who is also a work comp survivor of 11 years. I'm married to a great guy who deserves much better then this. I just had my 5th IME and have just been referred to the pain clinic at the Denver VAMC. Hopefully I'll pass all the tests and get a real pain doctor.

My husband and I live on a small 2 1/2 acre ranch on the Western Slope of Colorado near the Utah border. We have 1 dog (down from 3, 2 just died recently of old age) and 3 cats (down from 5 and up from 2 having been recently adopted by another cat who wandered into our lives).

I've been a surviover of chronic pain for over 30 years now and worked up until 8 years ago.

olecyn
10-13-2009, 01:33 AM
I like MOMZPEACHY post I am a RSI patient which I lost ALL feeling in my right arm one morning at work June 2000. Felt like it was shot up with novacain within 1 hour of feeling all tingly like I slept on it. Absolutely no feeling, dead wight for months. PT helped get back the fingers moving & some of the swelling down. Then the pain severly set in. My dept had just had my work station evaluated by the Environmental Health & Safety Dept a month prior my injury set in due to neck pain. NO ergonomics found in my favor. Of course I was working 12/14 hr days coming in weekends & taking home work. It was a new position so I was determned to get it up & running. There were no lunches or breaks due to the circumstances of my position & dept needs. All I can say is... NO job, no matter your loyalty & determination is worth your health.

2 years undiagnosed from doc to doc. Then a Neurologist at Kerlan Jobe said you have TOS. I said what? Whats that? Years of incorrect PT, all the drugs & stress. 2 MRA's at UCLA with Dr. Collins 2 years later confimed the diagnosis & the damage was done. I couldnt take the pain anymore so I waved the white flag to see a surgeon. I refused large amounts of drugs physicians wanted me on unsafely driving to & from work & working while on them. Yes, & still working during all this. I still remember keyboarding all the HR, budget & payroll as my fingers were like sticks, no feeling. Why? I was the only person in the dept who did all the work while managing the information center on campus. The dept didnt have the $$ for additional help for me which was asked for 6 months prior. Funny how they found the $$ to hire 3.5 additional full time employees, me an assistant & a full staff of students to cover the info center after the injury. They had no choice. oops, O NO!

Since 2000 I have seen over 39 docs not all on my accord but due to the attorneys fighting over my case. Surgery in 2002 consisted of a Bilateral Costaclavicular DE-Compression & R Ulnar nerve decompression. Increased pain returned within a month or so. Then a RCTR. No help. I was devestated. Told I could go back to work within 6 weeks. As I look back all the CRPS aches & pains set in shortly after the injury happened, not after surgery.

I lost my job, my career, lost my medical ins due to the university enable to work with my/the surgeons limitions requested. The university's legal team fought me on my disability retirement so I had no choice but to hire big guns which only cost me $20k. 1 case down...overwhemingly found in my favor. SSDI appeal hearing finally in Nov & W/C case still ongoing 10+ years & 60k in debt due to the W/C not approving medical necessities. All sound familiar?

And I see on here, W/C & SSDI forum RSD/CRPS/FM is not a concrete dx. Social Security doc appt was an absolute joke. This is really getting long so I wont even go there.

Neurotalk has been my savoir, the friends I have made through local meetings & support groups. And now the ability to help others with our Foundation called TOSsociety.org was develpoed in my name by my husband to help others & educate the medical profession, complimentary professionals, caretakers & patient. TOSsociety.org is a non-profit 501(c)(3) foundation. The foundation has gone from an idea-reality taking big steps towards awarness. I am looking forward to adding an RSD/CRPS page on the site. Any ideas are welcome by all. As this is for you. And please note...NEUROTALK is our forum of choice for the injured & chronic pain patient.

Any more & I'll be able to hear you~all snoring. blah, blah, blah

Gina_from_Mi
10-17-2009, 09:23 AM
Hi,

I have been recently diagnosed with CRPS. At first I was prescribed Lyrica and Lidocaine patches. I am not able to take the Lyrica, because it caused severe dizziness. I am now just wearing the patches every 12 hours as prescribed. Anyway, 4 days ago I went to an Orthopedic Surgeon (I went to him originally because I thought my finger was fractured based on the pain I was experiencing) to let him know that I was still experiencing pain, and cannot take the Lyrica. He did refer me to a pain clinic, but sent me on my way with no medication of any kind. He told me that the pain clinic would call within two weeks. I don't know what to do right now, because I'm exhausted from lack of sleep and still in pain with no relief. I have been reading posts here, and I am glad to have found other people with this disease, but I'm feeling very panicky because I don't have the energy to do the things I need to do. I'm also dealing with the people who don't understand this, and say things like "it'll probably just go away." I would love for that to be true, but in the meantime, I need to deal with the pain somehow. Anybody have any suggestions for me until I get to the pain clinic?

ouellem
10-17-2009, 02:36 PM
Hi Gina,

I know how the Lyrica can make you feel. It does make you really dizzy. I am taking 100 mg a day. I take it at night so much of those effects are gone by morning. It does take about two weeks for the dizziness to go away, but it is worth the wait. I also take 750 mg of Naproxen each day. I was taking two 500 mgs but we found a long acting 750 that works just as well.

The Lidocaine patches work for a while but I found that the Lidocaine gel that they use at PT helps a little more. Your doctor can prescribe to be used by your therapist, but they have to mix it with the ultrasound gel or massage lotion to dilute it a little. I wanted to try it straight but they said that it would make my foot numb (yeah, so what's the problem?)

Good luck with the pain clinic. Keep at it until they can help you. If you don't get the answers that you want try a different one. I have one in Ann Arbor that I love. Good Luck.
Hi,

I have been recently diagnosed with CRPS. At first I was prescribed Lyrica and Lidocaine patches. I am not able to take the Lyrica, because it caused severe dizziness. I am now just wearing the patches every 12 hours as prescribed. Anyway, 4 days ago I went to an Orthopedic Surgeon (I went to him originally because I thought my finger was fractured based on the pain I was experiencing) to let him know that I was still experiencing pain, and cannot take the Lyrica. He did refer me to a pain clinic, but sent me on my way with no medication of any kind. He told me that the pain clinic would call within two weeks. I don't know what to do right now, because I'm exhausted from lack of sleep and still in pain with no relief. I have been reading posts here, and I am glad to have found other people with this disease, but I'm feeling very panicky because I don't have the energy to do the things I need to do. I'm also dealing with the people who don't understand this, and say things like "it'll probably just go away." I would love for that to be true, but in the meantime, I need to deal with the pain somehow. Anybody have any suggestions for me until I get to the pain clinic?

Swatgen27
10-18-2009, 11:18 AM
Good Morning,

I'm new to this group and thought I should give some background on myself. 2 1/2 years ago I was given a shot for a migrane. The shot hit a nerve and that is what started the RSD. The affected area started at the hip region and since has spread two both legs from the hip to my toes. I was not correctly diagnoised until six months ago and therefore the diagnoises in itself was one of the worse struggles of my life. I have tried what it seems like every medicine and nerve blocks and I still cant get comfterable in my own body for the majority of the time.
I try to stay positive, and I still am working as a public accountant in a very fast paced, high demands career. The doctors tried to get me to leave my job but I refuse to let go of one main things that gives me a purpose.
Looking to share my story and hear about others so that we can learn from one another and fight this horrible disease together. Strength in numbers, right?

chefsuzz05
10-19-2009, 05:22 PM
Hello everyone, my name is Sue and I was diagnosed with CRPS last month. I fell down the steps at work and had an evulsion fracture of the navicular, had surgery June 30 to remove the fragment. I had my first Lumbar Sympathetic Nerve Block last Wednesday. Within 5 hours the ice cold temperature change, the color change and pain worse than before returned.

I have been researching alot about CRPS/RSD and would love to chat with anyone dealing with this as I am having an emotional as well as physical problem with this disorder.

Thanks.

Swatgen27
10-21-2009, 07:53 PM
Gina
Do you have a primary doctor that you could see in the mean time while you are waiting to get into the pain program? I can’t imagine not being provided the medicines needed to deal and fight this disease. If you don’t have primary get into a neurologists office because the issue I think is the fact that the doctor you was an orthopedic doctor and they don’t treat nerve pain very well. I would start there because any doctor that is familiar with RSD knows there are many other medicines used to treat the symptoms of RSD than just Lyrica.

ColoVet
10-25-2009, 04:29 PM
I'm 56 yo and have had TOS, RSD, CPS and a host of other things for about 13 years. I was injured at the Choice Hotels Call Center and permanently disabled by the treatment I got. I'm married to a wonderful man who stayed with me in spite of my injury and my change in personality because of the pain. We have a small ranch in Western Slope of Colorado. We have 1 dog, 3 cats, 2 tanks of fish, wild quill and pheasants and tons of wild rabbits.

I'm also a veteran and refuse to turn over and quit for these jerks at wc. They picked the wrong person to screw with. I'm like a pit bull. You kick me I go for your private parts and bite down. the more you kick me the harder I bite and if you kill me you'll have me hanging from your body until I rot away.

I'd just gotten to the point where I was so tired I hadn't been as active in the WC movement as before. That changed with this request for a new IME just 3 months after the last one. Don't they know to let a sleeping dog lie????:eek:

maddiesgram
10-31-2009, 02:43 AM
Hi everyone.

I think I got a firm diagnosis of RSD this week... well, I did from 2 doctors and have from about 6 docs before. The problem is that my pain management doc does not think I have it. He's the only one. I'm basically convinced that I do. My pain doc says that I have nerve damage from a surgery almost 3 years ago. I hate that I want everyone to agree on a diagnosis and plan of some kind. Anyway, I'm new here and don't know if this is where I should post. I have a question for any RSD people... can RSD be in a little toe only (a bit of the foot, too)? My pain doc thinks it must be in a larger region, thus the name complex regional pain disorder. I had a test by a foot doctor this week and I'm convinced and he is convinced that I do have RSD. I had 3 lumbar sympathetic blocks 2 years ago and the pain doc that did them said that my positive response to them was absolutely diagnostic of RSD. I don't know who to believe. I know that people can see many doctors to finally get diagnosed, but it's hard to accept because I had just met with a doctor in another city who could do an amputation of my toe and part of foot and he thought my pain would go away. I was so thrilled. But then the docs here said that "No... it would make everything worse." I'm so discouraged by all of this and have close to no support of any kind. I have a very strange question, but do any of you talk to each other by phone? I so wish I had someone to talk to by phone that would understand the pain. If anyone else wants to talk, let me know. Thanks for reading this.

twinsplus1
11-20-2009, 10:15 AM
Hi! I'm Robyn, I'm 39 and live in Maryland. I have 3 delightful yet sometimes devilish children, a wonderful supportive husband and 3 goofy boxers. I've had back and neck pain basically since high-school. It escalated as the years went on. Finally over the period of a 3 month time frame, the pain in my lumbar was way more often then not. Suddenly, while at the beach on vacation over the July 4th holiday, I stepped out of bed and had a incredible pain in my lumbar region that took my breath away. I waited a few minutes, took some ibuprophen and did my scheduled 2 mile walk. I popped the motrin like candy that week and just figured it would go away. By the end of the week, I woke one morning and realized my big toe and a portion of my foot were numb. I didn't really think much of that. By the end of the day it was numb up to my knee and again, I just let that go. I have a high pain tolerance and as mother's often do, I put myself on the back burner. Within days I started to realize I was tripping a LOT and that my left foot wasn't really working. I still let it go thinking it would get better. Finally I decided I should maybe see a chiropractor (which I had NEVER done before). I called and explained the loss of the use of my foot and made the appointment. Over the course of 4 appointments I mentioned everytime that I really wasn't walking normally and the pain in my legs and lower back was worsening. She stopped working on my back but continued my with my neck. Finally the next time she asked me to walk and she immediately sent me for an mri. The next day she said she couldn't touch my back anymore and that I needed to see a neurosurgeon. She continued working on my neck which was feeling worse with every session not better. I called the neuro and my appt wasn't for 4 mo. so I explained that the chiro believed I needed to be seen immediately so they asked me to send over my MRI report. Within the hour they called me back and I had an appt. the next day, a Tue. When the Neuro saw my MRI he was alarmed because apparently, a LARGE disc fragment had broken off and slid down my spinal canal and was pressing on nerves. The surgery was set for 2 days later, in August. I stopped seeing the Chiro because of my worsening neck pain. An MRI showed that I needed a cervical fusion for that, I had that done that Oct. My lumbar continued to be a pain issue and I then had an epidural injection. It lasted 7 days. I had a second injection (that resulted in an immediate sever spinal headache and major drop in blood pressure, then an emergency blood patch). That injection lasted 5 days. Finally, I had a lumbar fusion with instrumentation in May. My pain hasn't gone away and I'm extremely frustrated. I had 2 rhizotomy's, one on each side in the past month. I am actually in more pain now then ever. I can't explain how frustrated I am with this entire thing!

karmic358
11-21-2009, 12:00 PM
Hello everyone,
I just found this site and I'm looking for some advice or sugesstions. I'm a social worker and was injured at work when one of my clients had a mental breakdown and was running in traffic. I put my arms out to block him getting hit by a car and he ran into my hand, tearing the tendon off the bone. The initial diagnosis was a sprain and I had to convince the doctor something was really wrong with my hand. Surgery was delay because of that and recovery had been slow and painful. I have never had a panic attack in my life before this, but the ongoing medical procedures are overwhelming. I had my first SGB yesterday and was completely traumatized by it. The block did not work and my neck and throat are very sore---and the pain in my hand is the same as before. I am scheduled for another on monday and I'm not feeling hopeful.
I really would like to get a break from pain, stress, and worry long enough to get some sleep/energy back. I'm open to any help or suggestions....thanks

tjack
11-23-2009, 04:17 AM
Hi!
My name is Tina and new to this site, I was diagnosed with RSD 5 months ago in left leg. However I suspect I have had this condition for years. 5 years ago I was hit by a car while walking across a crosswalk sustaining a left shattered shoulder and left knee injuries. Went thru 9 months of torturous PT only continuing to worsen ending up with a torn rotator cuff that according to xrays and doctors I did not have before PT. My shoulder is frozen and still very painful to this day and left leg severly swollen, painful, and also unable to straighten. It has now spread to both legs, arms, wrists and hands. My quality of life has changed dramatically from a very active, physically fit, and social life to struggling to move, pain filled, and isolated exsistence.
Thankful to all of you for this site! I'm sorry any of you have this RSD stuff, but so greatful to find I'm not crazy and alone. Your stories have given me encouragement and hope. Again Thank You!

azsister
12-01-2009, 07:47 PM
My sister fell off a ladder on 09/07/09 and broke her shoulder and arm. She saw an orthopedic surgeon and he said she was healing quickly and that he wanted her to start physical therapy. She started therapy but instead of getting better, the pain got worse and worse. She kept telling him that something else was wrong because her hand started swelling and changing color and now she has difficulty using her right hand. She is in constant, severe pain - can't sleep or eat. Her primary care physician thinks she has RSD and she will get her test results tomorrow. She is a flight attendant and the mother of two teen age boys and this has brought her to her knees. Does anyone know of any doctors in the Phoenix, AZ area who specialize in treating RSD? Our family will do whatever it takes and travel out of state if necessary to get treatment. Do you start with medication or nerve blockers?

Enjny
12-03-2009, 07:28 PM
Hi :]

Well I am a 17 year old senior in high school and I was diagnosed with RST or CRPS 7 months ago. It all started in January when my foot was numb and I got up and some one pushed me causing my foot to bend in a abnormal way. It hurt a lot, but within 3 months it was better and I maintained walking on it throughout everything. Once it was better I still felt pain, but my doctor said it was just because I had flat feet. During the summer I started my color guard practice which involved ballet, running, jumps, etc. I was practicing for more than 5 hours each day and I still felt this horrible discomfort, but I went along with it. When camp time came it was 18 hours straight of non-stop dancing and running and I almost lasted two weeks.

The first day of away camp, after everything, I could barely walk. The pain was awful and the slightest touch caused me to flinch. I went to the ER and they said I had tendinitis and that it would be better within a week. So I got some crutches ( for the first time ever) and continued learning my color guard routine. I really couldn't stand the pain, but my coach told me I should try to join in because if I didn't, I wouldn't be able to join them in the Fall and I would be too far behind. So following his orders...I went to the extreme and didn't use my crutches and followed along. This lasted until day three of camp when I collapsed and couldn't get up. I told my coach I would have to sit from the sidelines and wait it out.

My foot was huge and purple before I ever went to the Er so now, you can imagine, it was the worst I had ever seen and I had this constant pain. When camp ended and I went home, I went to the doctor and she said I probably had a small fracture in my foot and I had to wait 3 weeks until I could go visit my new Orthopedic doctor. So I was still on my crutches and I toughed out high school and when I went for my first visit to the doctors, he told me to get an X-ray, MRI, etc but he believe it was RST and he wanted to make sure nothing was wrong, so I got everything done and everything came back fine. I had to go to Physical Therapy now.

I went to PT for over 3 months and although it was painful, my foot got better and I could actually touch it with a tissue- which was impressive. Still, A lot of things bothered it. Aside for the constant pain I had, it was always cold, my wrap made it sting, and I couldn't sleep because every time it touched the bed, I would feel this awful pain and instantly walk up. Over these 3 months I went from both crutches to one crutch and then a walking boot with an ankle brace. Walking without anything lasted a good..4 days because after that, that awful pain that I got the first week of camp came back and it was worse than ever. My PT couldn't even touch it or put anything hot or cold on it. My Orthopedic doctor thought it was time to go to the pain center.

Its was November by then and now I could barely walk on it and I was back on my crutches. During the duration of the month I got two sympathetic nerve blocks. The doctors plan was to give me one every week until the pain was at a good level and then spread them out. The first block I was completely out during the actual shot and when I woke up, my pain had subsided a bit ( on a scale of 1-10 probably a 8), but once I touched the floor that blaring 10 came back and stayed all week until my next shot which was the following week. The 2nd shot didn't go as well for me. It was on the 23rd of November and this doctor liked his patients to be apart of the actual "shot" and he got that from me. I felt everything and heard everything the doctor said and once I got the shot not only did my foot feel worse, I now have an awful pain in the lower part of my back ( lumbar region)< where they gave me the shot>

The doctor believes it was because my nerves aren't working well that I have this awful pain in my back and now I am in a wheel chair. Aside from that I can't go to school because of this awful pain and my medications make me sleep through most of the day( but they don't give me relief). Tomorrow will be my first time going to school with this much pain. Now I have to wait until Monday and I am hopefully getting either a Tunneled Epidural catheter or a Spinal Cord Stimulator.

So this is my story that is still continuing....and will hopefully have a good ending :]

Thank you for reading <3

snowboarder13
12-11-2009, 01:29 PM
I am able, I am weak. I am some strength, I am none. I am being, I am thought. I am all things, said and done. I am born, I am died. I am dust upon the roots. I am grace, I am pain. I am labor of willed fruits. I am certain, I am doubtful. I am desperate for solutions.
I am a teenager suffering with Reflex Sympathetic Dystrophy or as I call it, RSD. You may know me personally or you may not, but who I am is not really important, only the fact that I live in chronic pain matters.
I need to tell you several things, including what I have learned from having RSD, but first I am going to tell you what it’s like to be a teen living with RSD.
Everyday, the average teenager wakes up, gets dressed, goes to school, talks to friends, participates in sports and other activities, goes home, does homework, and then goes to sleep. However, the RSD teenager is not able to do these things. Everyday I wake up and the first sensation of the day is pain. I get dressed slowly because clothes and socks are such agony to pull on against the skin. School is a blur and I go tiredly home since I can’t participate in any type of sports. When nighttime comes, the war between pain and exhaustion battle inside my body. Pain wins… sleep loses.
Are you beginning to understand me yet? Now, before you start making a stereotype of RSD kids, I need to clear up a few things that tend to be common misunderstandings…
RSD kids rarely look sick, maybe tired, but not sick. Please do not make comments such as, “ but you look like you feel better!” When I feel better, I will say that I feel better. Also, remember that like any other teen, I want to look nice I don’t want to look sick.
I have also received remarks like this, “ well you can’t be in too much pain if you’re still smiling!” Now, let me ask you this; have you ever been sick with a cold or flu? You are probably thinking about how grouchy and depressed you were in the five-day span of that cold. However, most of us with RSD have been in pain seven days a week, 24 hours a day for weeks, months, or years. I cannot be depressed all the time. I try to be positive and happy for my friends and family, even though there are times that I’m not as happy as everyone assumes.
I would like you to understand that RSD is a neurological disorder, not a psychological disorder. Remember that while depression may occur after RSD and might hinder recovery, depression does not cause RSD. Also, being sad or depressed after the onset of RSD does not mean that any of us are crazy… wouldn’t you be discouraged if you spent every day, every hour, and every minute in pain without ever knowing when or if you will recover?
Please don’t expect me to act the same and think the same as I did before RSD. Constant pain can make me annoyed and sometimes I get frustrated easily. Meds can make me drowsy, dizzy, or might give me headaches. I might miss school for doctor appointments or physical therapy. When I do come back to school I am often tired, so if I can’t carry on a conversation or concentrate in class, please try not to get impatient with me.
Have you seen me walking? Or have you seen me with shoes and socks on? Please don’t ask me absurd questions like, “ does that hurt?” Of course, it hurts. It hurts so much sometimes that I don’t think I can bear the pain anymore and I wish that I could just curl up and die. Please understand that I have to do things such as trying to wear a shoe or sock or walking to get even a little better. I know I have to do these things, but it is extremely painful because of the hypersensitivity. Please don’t act like you understand everything about RSD because you don’t. I don’t mean to sound so harsh, but reading an RSD brochure or looking through an RSD info site doesn’t make you and expert in pain until you have experienced it. Unless you are and RSD’er, please don’t try to keep offering me recent advice or a “miracle cure.” I understand you want to help me, but only I know what helps me and what hurts me.
An RSD’er once said that sometimes with RSD you have to take two steps back and one step forward. This statement holds a lot of truth to it. RSD is unpredictable and none of us who suffer with it ever know how we will feel from day to day. I think that is the hardest thing for anyone to understand though, except for those of us who suffer with RSD. Everyone thinks that once we get on the road to recovery, we should stay there… but RSD differs greatly from a football injury or a ligament strain and we are going to have many setbacks. One day, I might be able to move around a lot, the next I can barely get out of bed because the pain is so bad.
Don’t ever accuse me of not wanting or not trying to get better. You’re not with me all the time and you don’t know how much I have tried and continue to try to get better. Small things like trying to desensitize my skin and letting water from a shower flow over my leg or just lying my foot on the ground is an achievement for me, but of course no one ever sees that. They just want me to be able to jump one day and be healed. You don’t know the pain, the loneliness, the fear, or the nightmare RSD is. I remember the first time I was diagnosed with RSD. That was horrible.
It all happened late one night at homecoming in the seventh grade. I was running around having a great time watching football, and being with my friends. Then something happened that changed my life forever. At first it felt only like I twisted my ankle, then the pain spread up my leg to my knee. The pain was so bad but I didn’t want to admit defeat so I kept playing and trying to have a good time. I didn’t think anything about the pain until it got worse and worse, so bad I could barely stand. I was stupid. Instead of going home I stayed for the bonfire that was after the game. Then after that I got a ride with one of my friends and went home to see if rest would make my leg feel better. In the morning the pain was worse than it was the night before. I couldn’t go to school and my mom took me to the doctors. I couldn’t put any pressure on my leg so I had to hop everywhere until I got a pair of crutches. The doctor thought it was just a sprain like I had, so he wrapped an ace bandage around my knee. After a few days the pain was still just as bad so I went back to the doctors. Now they thought maybe it was broken so I was sent to the hospital to get X-rays. There was no break anywhere and that is where the RSD ‘theory’ comes in. I had to have a ton of tests and all of them read RSD. That was when I was diagnosed with the worst possible neurological disorder a kid could get. Life was not the same anymore. I blamed everyone for my problems even though they had nothing to do with it. But then I learned that my problems were mine and mine only. I learned that I had to be strong in order to keep my life semi-normal. It was hard but here I am today, I am resilient, a survivor and determined not to quit fighting…
And what I really need is for you to understand me. Remember it is still me inside this body filled with awful pain and I still like laughing, talking, and doing ‘normal’ things. Remember that I’m still me even though I have RSD.
I have learned that every child with RSD has a story almost exactly identical and if his or her name weren’t there, the stories wouldn’t be able to differ much. I have also learned that life should be taken in stride. So, my time on earth, on fate depends. But all that happens in the space we are meant to live depends on me and choices I face. For better or worse they’re mine to make. So my time on earth will be well spent and when I leave this world I’ll leave with no regrets. And I will continue to learn about what RSD teaches me…

painfullylovinglife
12-16-2009, 01:44 AM
My name is Crystal. I was diagnosed with RSD/CRPS 9 years ago. Only I have suffered since I was, well, born. Im 27 now. I walk like a 99 year old amputee, I move like molasses out of a freezer, I think like Im too old and wise for my age, and I love my life. I've peed myself because of laughing, inability to walk, and of course pain. I have no friends.. Or should I say, no friends have me? !?!?!?! I have a low tolerance for inept, lazy or just plain ignorant people. I refuse to live off narcotics. I found the man of my dreams and married him. I have 2 dogs that weigh more than most teens do.
I demanded my doc PROVE to me he was right when he said it was RSD. I've had 27 surgeries. Im a rare case of RSD, it has crossed paths of my body and infected both sides and now is working on my upper torso. I laugh in RSD's face. Unlike most women, who terrorize themselves over weight, beauty, popularity, I terrorize myself over actually cleaning the whole house in one day, cooking a meal for my husband, and going to the 12 docs in one month. I dont brush my hair daily, it hurts, I dont want to burn that little amount of energy on THAT one task, and my husband likes the "got stuck in a tunnel during gail force winds" look.:winky:
On a serious note, I know the pains and agonies of this disease, I've had it my whole life. 29 docs it took to find the right name/reason for my problems. I've had every diagnosis under the sun, including one dr telling my parents "she's just an overweight, unsociable, depressed kid." Partly true, I was overweight and depressed. BUUUUTT the inability to get up and go like the other 9 year olds does a number on one's head.
I suffer from many other health problems, R.A. O.A. Gout, arachnoiditis, salandiatis, sjogrens, lupus, insomnia, chronic sinuitis,fibromyalgia, osteoperosis, and of course depression.
AS you can tell I have the immune system of a turd.... But in the mist of all this I have a wonderful husband that cherishs me, loves me, spoils me, and puts up with me. He will cancel guys night out to stay home and play cards with me, he will run to the store for tampons even if EVERY person he knows is in the store at that exact moment. he proposed to me while I was on crutches (had been on them 14months by then) with a cast up to my booty cheek. He said it was the best time to ask, since I couldn't run. ( had him fooled, I've never been capable of running)
He is willing to have a vesctomy so I dont have to indure any other surgeries that arent "life altering for the better." He loves our fur babies like most would love their skin kids. he rushes to my side when I fall while walking on flat surfaces, and laughs when he knows he shouldnt.
I learned to deal with my pain and heartaches from my mother, who suffers from dibiltating disorders. She doesnt understand the RSD but sure tries. Nobody around me understands it. They dont go through it. I have had friends, and lost them. They are scared of me, maybe they think im contagious or maybe its too hard to deal with. Either way I understand. I've never asked why me. I am actually thankful that I, instead of my sis got dealt this hand. She wouldn't have survived 18 years, let alone 27.
I need support for the days I feel it the most, have tried shrinks, they just want to dope me up, or tell me that I am doing fine on my own, why spend the money to see them...
I went to an actual support group once for pain sufferers, but when your the only under 50yr old in the group, its disheartening. These elderly people worked and tortured their bodies for decades to end up in pain. I was merely born.
I only need 1.5 semesters to have my assoc in criminal justice. But I had to drop out because I am unable to get around the campus. I havent had the urge to go back, no time with the doc's and trying to live my life to the fullest.
I have not worn socks or real shoes in over 12 years. I would rather slam my head in a vault door than feel my feet wrapped in any fabric/constricting materials. I snap at people when Im in so much pain but refuse to give in to it.
My dogs are trained to the words "watch feet" and actually know what that means. One has not had his tail docked and is learning to "hold tail" so it doesn't wack my legs.
I've learned how to live in Illinois with freezing temps and unable to wear pants or any clothing that touches my lower legs or lower arms. Im almost always barefoot. During the winter my hubby has been trained to look for signs of frost bite, since I cant wear socks and dont have "true" feeling in my toes, he helps me watch to make sure I haven't deep froze any digits off.
I fall, alot. I cry at stupid things, Im obsessed with other people's feet. I watch them constantly. I hate feet.
I wonder what its like to have true feeling in my lower limbs, what is like to walk without pain shooting through me so fiercly that I want to rip someones head off, so that they may understand what I feel.
I answer "does that hurt" with " if I jabbed you in the eye with a hot stick, would that hurt?" I've learned that its better to misplace your wedding ring than have it cut off from being too stubborn to remove it when your hands swell. I've made little kids cry when they looked at my "multi-colored" legs with the scars and battle wounds. I've possibly prevented some tweens from doing drugs, when they asked "why your legs look like that" I've responded with "well when I was about your age I decided to try smoking pot, and the next day I woke up and my legs were like this."
The world as taught me to be hard and mean, and still be able to stop and help an elderly lady with her bags. I dont mind the people staring any more. I still get offended by lazy people, they have no clue what they are missing. One thing I can say is I cant wish for my life to be any other way, that could be the bad way. Without pain I could have turned out skinny and a slut, or an addict, or even *shutter* lazy. My life is mine, painful, but so full of love and trials that only I can live it. I do wish to find some common "grounded" friends or associates. There are things I dont handle well, and I think with the help of like minded (or should I say like-pained) people I could better handle some things.

chacha
01-24-2010, 02:53 PM
Oct 26 2009 I had a minor foot surgery removal of neuroma, a cyst on foot and shaved off bunion.

One month later my leg turned a different color. It would be red or blue; my foot was swollen and also discolored.

I had severe burning pain knife like in my foot and lots of sensitivity and needle like pain.

I have been taking Lyrica and getting Lumbar Blocks. It is better now my leg is not discolored. I can walk more normally. I still have sensitivity, tingling, discoloration of foot, skin looks shiny and swollen.

Courtw84
02-01-2010, 10:19 PM
Hello! My name is Courtney and I am a 21 year old girl, who finally after atleast 4 years of searching for answers was diagnosed with CRPS! I am new to NeuroTalk and just wanted to tell my story and get started with a support team of people who understand what I am going through.

When I was in 4th grade, I was a competitive gymnast and was getting ready for a competition the next day. I was practicing my vaults and when running, felt a pop in my buttock area. After a doctor vistit and MRI it was discovered that I had avulsed my ischiam in my pelvis. Since I was so young the treatment was to stay out of gymnastics a few months and let the pelvis heal on its own. After a few months I went back into gymnastics and trained and then ended up quiting and started cheering competitively as well as as school.

My freshmen year of high school, I was dropped doing a stunt and landed on my butt. After going back to the dr. and another MRI, result's showed either a re-tare of the ischiam or that it never healed originially. I quit competitive cheerleading and layed off the activity. Pain worsened and worsened through out the years and my leg began to have tremors and shakes when it got tired and was hurting bad. My senior year of high school the pain overtook me and I basically became paralyzed, and in so much pain even to touch my foot would completely un-nerve me. I was taking hydro-codiene and morphine at home and it hardly even touched the pain. Every doctor I saw would take a look at x-ray's and tell me "they wouldn't touch me with a 10 ft pole." Finally, after many dr's, I found a confident orthapedic trauma specialist that said that he could make me better.

Surgery was perfomed. The bone that I had avulsed has entraped my sciatic nerve. The bone was removed and my nerve was released. The night after the surgery I could already tell that I was better! Within a week I threw out all pain medication and was begining to walk again.

About 2 months later I was jogging and felt the same familiar pain shoot down throught my toes. Back to the doctor for more MRI's. Results revealed heterotopic ossification in my muscle adjacent to the sciatic nerve. My surgeons exact words were to suck it up. Determined that I didn't HAVE to live in pain, I searched for doctors. I went from orthapedic surgeons, to neurologists, to back specialists, since my pain had began to go into my back as well. One orthpedica trauma specialist told me it was in my head and I was making up the pain.
Therefore, I decided to put myself with a psychologist and pain management doctor. The psychologist told me that I was fine, I was just in pain, and the pain management doctor put me on different medications that gave me headaches and horrible side effects but never helped with pain. I even tried one medication that gave me mood swings and suicidal thoughts.
Finally, after researching online we found a wonderful doctor at the hospital for special surgery in New York. We traveled to New York to see him. Which was the first place that RSD/CRPS was mentioned. Me, being sick of doctors ignored this, by my mother went home and researched it. The New York doctor prescribed a lumbar sympathetic block to be done at my pain clinic back in Texas. My pain management doctor was completely convinced that this was not the case and that this block would not help me, but he agreed to try it out. I had the block and felt immediate relief! It was like a new me, and I had never felt that good in my life!!! The temperature difference when the block took was a 10 degree difference, which my pain management doctor was pleased to say that it was afterall a succeful block.
The block lasted me about 9 months and I received another block in December of 2009. The second block took just as well, but my back pain was getting worse! I proceeded to go see back doctor at Texas Spine Team. Who took MRI's and referred me to another physiologist in his center. The MRI's came back nomal. Even the heterotopic ossification and dissapeared, which in our opinion was an unbelievable gift from God! Good news, which also confirmed the bad news of CRPS!

My physiologist talked to me about options, but listed me a favorable to recover! I know I have a long road ahead of me, and I am willing to do anything to get better!!! I am excited to have found this website, where I cant talk with others in pain, and we can give eachother positive feedback!

Anyways, that's my story! Can't wait to hear from everyone!!!

abrown176
02-02-2010, 10:02 AM
I am 28. I was diagnosed with RSD in March 08. I have had many sprained my right ankle many times through high school. Through most of high school I stayed on cruthches due to the intense pain in my ankle. I would have MRI after MRI to be told it was in my head. I would do physical therapy, and to no avail it made it worse. My doctor kept treating me like all I was, was a teenager looking for my next high. But the truth of it was that I was a straight A student that had never smoked, drinked, or did any kind of drugs. He told me just to take aleve and that should help. This continued for years until I fell again in December 07. When I fell, I went to the Er. They put it in a splint and told me to see an orthopedist. My ortho doc here in town did not take my insurance. At the time I was so upset but, it turns out it was a blessing. Since he did not take my insurance I had to start looking elsewhere for a doc. That is when I found my ortho I am now seeing who knows alot about RSD. After being in a cast for 6 weeks, the pain was still very much there. I told him of my troubles since high school and he said he believed it was RSD. He then sent me to a pain management doc. They are like very best friends and would talk about my case together. I had a triphase bone scan and some tempeature test done which then comfirmed the diagnosise that had been many years in the making and suffering. I then recieved a lumbar spinal block which did make temperature difference but not a pain difference. After many attempts and a epidural drip for 5 days inpatient, I had a spinal cord stimulator implanted in April 09. This has helped so much with the pain but the battery is so sore. They have me taking Gabapentin 800mg, Hydrocodone10-325, orphenadrine 100mg, meloxicam 15mg,sertraline 100mg, buspirone 15mg, and trazodone 50mg. I see them as well as a physciatrist to help with the depression that just comes with it. I am so glad to have people to understand what you are going through to talk to. I look forward to talking in the future!!

hipnochik
02-03-2010, 01:58 AM
Hello, all!

I am new to this RSD hell and new to this forum. I have spent the evening reading tons of posts and you all seem like a super bunch of people!
I look forward to sharing stories, tips, highs and lows and, most importantly, laughter!
Gentle hugs to you all,

Kelly: grouphug:

babs74
02-06-2010, 02:37 AM
I've commented some before. I'll fill in some details. First though, I want to say I'm so glad to find this site. I've had "the beast" for over 5 yrs but have never met anyone else with it. I'm hoping to get a chance to ask some of you more questions.

I was just leaving work on a Fri evening when a large room divider fell on me, trapping me under it. I'd seen it coming & "blocked it" from hitting my face with my right hand. Thought I'd broken several bones at 1st. Finally someone heard me yelling & pulled it off. My hand/wrist felt sprained, & my neck felt a little sprained. But within a couple of weeks (I kept working) I felt like monsters were attacking my right arm, hand, shoulder & neck.

I was sent to an Orthopedic Hand Specialist, who just shrugged when I showed him my swollen, deep blue hand & asked what it was. Even though my employer was furious that I never go a diagnosis, I kept going to this doctor (maybe I got hit in the head, too! :confused: ).

I had a torn ulnar nerve he said, & he put me in a splint & sent me for PT, too. The physical therapist kept saying something was "really wrong" with my shoulder, but the "hand specialist doc" just put off the MRI.

Two yrs later I got an MRI on my own & they found multiple torn ligaments, etc, etc. Fortunately I'd been seeing a Chiro who was GREAT with elbows & shoulders who kept it loose.

After the MRI diagnoses WC switched me to an Orhtopedic who was a "Shoulder Surgery" specialist. I told him I wanted to try injections before surgery & he went along with me (thank God!), because after 2 injections I could barely function due to the pain. I cried at work in the bathroom. That's when they told me I had RSD. Thankfully we didn't go straight for the surgery!

It took about another 8 months before WC would approve me for SGB's. But they worked fantastically when I finally did get them (total of 6).

My injury was in Aug 2001, and in 2002 I started having burning on the bottom of my feet. It slowly moved up my legs. They both now burn to just above my knees. I don't know if this is RSD or not. And, since WC only authorizes my doctors to look at my arms/hands (they've acknowledged it's moved into my left arm too, but not nearly as severe as right), the doctos just sort of change the subject when I ask what the pain is in my feet and legs.

Maybe someone has had a similar experience.

After I went to an Agreed Med Exam last Feb, not knowing 18 months of my medical records were not sent to him, he P&S'd me, so I have had to live on $720 a month "advances" from any settlement. I'm in dire financial straights! I've had to "live" on my credit card, now I can't afford the minimum & was on the phone arranging stuff with them today. But something always works out! I just thought my settlement would come through at least 6 months ago!

I live in a guest house that's just perfect, even though my family are all far, far, away. My landlords are my friends, & let me go without rent a month or two, even though they've had problems. But they just got a notice that their house is in foreclosure!! I feel so bad for them. So I'm trying to arrange to move....somewhere. I have about $75 to pay toward rent these days. So, I shouldn't have any problem, right? :D

If I didn't hurt so much & feel so tired, I'd dress up & go see if I could find a "Knight in Shining Armor"!! :)

I love to laugh, that's why I love reading some of the stuff on this site. You funny guys, KEEP IT UP PLEASE!

The way I try to look at it is that my life is kind of an adventure right now! I'm praying & waiting to see what opens up!

Take care all you precious people!

Denise

I am sorry for your loss by the way.. Wanted to state that first.. I was working in a nursing home.. Just been there 2 months and a resident got violent.. i got hurt on left hand.. wc put me on light duty for week. went back to nurse practioner and she released me after i told her it was still hurting badly.. went back on christmas day in 08.. what do u expect happens? reinjures the hand.this time it shoots up my arm.. now i have it all the way up in my shoulder and into right shoulder and feels like its moving down right arm.. and my doc says there isnt anymore i can do for you.. i have no pain meds that have ever helped me... I am suffering alone. work comp hasnt paid one dime for my meds.. and on the 1-10 scale i am way over 10 more like 30,,,
i lost my job shortly after my second injury.. 6 months later hubby lost his job.. we are living on my unemployment and 70 bucks a week.. walmart hired me with restrictions,, and now wants to fire me cuz of those restrictions.. so i feel for you.. i really do.. so if u ever need to talk email me and ill give you my number and u can call me or ill call u.. cus i just had to go on antidepressants

babs74
02-06-2010, 02:52 AM
I recently became a victim of rsd..I had my first injury on 12*12*08 and the second on 12*25*08 and were not positive which one caused the rsd.. it is progressivly getting worse. it stayed in my hand for several months.. then it went to the elbow.. wasnt awful but it still hurt pretty bad. hit both shoulders.. now the elbow is worse than the hand ever was and the should on right is getting much worse..i have had stallage ganglion blocks,, no help.had a beir block no help.. have tried emla cream became immune..basically i have no meds to help me.. my last pain doc told me it was all pain med control and he couldnt help me. now this is all work comp. and from reading we all know that they arent paying for my meds. and lyrica is high dollar and i dont have the money to pay for it.. hell they fired me after i got hurt.. lost my house. hubby lost his jjob cuz of economy.. this has been horrible for us.. I finally had to go on antidepressants. just for left arm my disability rating is 59% for the whole body.. 99% for the arm. and so for noone has given me any hope.. so if anyone has hope please share.. or knows of a good doc that can help me please let me know...
thanks

akgh
02-07-2010, 01:37 AM
Hi. My name is Anita and I was diagnosed with RSD in the left arm in Jan of '08. I fell at work landing on my left elbow which drove my shoulder straight up. At first it wasn't so bad, I was sent to physical therapy but after 2 weeks I wasn't improving at all. About 30 minutes after I would get home my arm would swell up, then it began to turn purple and get cold. At work it would turn almost black and it would be literally as cold as ice. I couldn't get the treating physician's assistant or the physical therapist to listen until it happened during physical therapy one day. I was taken around to the assistant who didn't have a clue so I insisted on being sent to someone who could tell me what was wrong. I went to an orthopedic specialist and he knew immediately what it was and sent me to another doctor to see what he thought. During this time I was still on full duty at work (which is heavy type of work) until the doctor realized that it truly was RSD and he began treating it. I went through a series of tests and medications, none of which seemed to work. Right now I'm on Lyrica, Mobic, and a Lidoderm patch which seems to help the most. Right before I was declared at maximum medical improvement I was sent to another doctor to see if he agreed with my doctor and he did. We all discussed doing nerve blocks but I wasn't really for it. My case isn't severe yet, it was diagnosed as CRPS II, and I didn't want to get a nerve block that they said would only last a few months and then have to learn to deal with the pain all over again. I was also told that often when the pain returns it is far worse than it was previously. Like most every one here, people just don't understand what you are dealing with and why you can't sleep and how bad that awful burning sensation is. I describe it as a bad 2nd degree sunburn that someone is scrubbing with scratchy wool, then there is that creepy sensation of spiders crawling up and down my arm (of course one time there really was, kind of funny), and the deep bone pain. I recently lost my job because of this, the workplace decided after 26 months to try to force me to violate my restrictions and when I wouldn't they said they are putting me down as a "no call no show" whether I show up or not. That's frustrating, my daughter, who is a single mother, is having to support me, she works 2 jobs and is just exhausted but really is wonderful support. It is great to have a place to go where other people understand everything you are dealing with. I look forward to getting to talk other people here.

WaterRabbit
02-25-2010, 03:53 AM
Hi! I'm Water Rabbit!

[QUOTE=frogga;57601]Hey;

Most of this is copied from earlier on - but as it took me days to write I don't want to have to retype it!

Basically (if you can't be bothered to read this as it is very long and boring). I got RSD when I was 16 after injuring my right wrist and I am 21. In that time it has spread full body and I have developed secondary dystonia which is also body wide. I have just started at university and am studying psychology. I am in a wheelchair and have a live in 24 hour carer. I love animals and have 5 cats and 2 dogs at home and unfortunately none at uni. I used to be very musical but now prefer hanging out with my friends or reading.

Take care and pain free hugs!

Rosie xxxxxxxxxxxxxx (a.k.a Frogga)

<snip>
Hi Rosie!

You history was not "boring" at all, but very informational and helpful!

I've had chronic pain since I was a child, am now in my 40's and yet the RSD is new to me. I NEVER thought I would be asking ANY doctor for a wheelchair, but in the last few weeks I've done just that!

I've considered having a live-in caretaker, and may not have a choice if this gets any worse.

Have you ever thought of writing a book on RSD/Dystonia and your experiences? feelings? treatments that worked for you, and those that didn't?

My RSD happened after I'd had the flu for about 3.5-4 weeks (H1N1 I believe, as a friend's children had just been given live H1N1 vaccine, and my immune system is, well... not the best.)

I've been tested for (and misdiagnosed, as the doctors gently put it) a few times now. My RSD started in the big toe joint (metatarpharengeal joint), and has now spread up my leg. I already had chronic pain problems, which are FAR worse now, as a result of bed rest I'm sure, and I too am concerned about this spreading.

I've had muscle jerking, like I had before, yet seriously far more pronounced, and harder to "hide" than it was.

The docs think my RSD started from an old back injury, a 20-year-old back injury, which I'm told is quite rare.

If I listed all the diagnosis I've had over the years, I'd pretty much cover about half the Merck manual it seems!

I am tired, and I too had vascular testing, which was thought to be a clot, until the cardiovascular surgeon saw the pictures I took at the hospital, the swelling, and realized the "non-compressable veins" were actually already compressed by the swelling. He's going to retest in a couple of weeks to be sure, and be sure my foot is up and hopefully not as swollen as it was for the next test, but the tech that did my duplex in the hospital didn't even measure my swelling (A common mistake), never noted it anywhere, and I was SO glad that I started keeping a photo diary. It's difficult for me to write by hand b/c nerve damage from anther injury (dog bite w/ open or compound fractures, and I too had lost use of my entire hand for a year and was told at one point amputation was possible.

I put my foot down, and it turns purple. I put it up, it looks pretty normal.
Still hurts, like you said, even with a fan, and sometimes even a breeze, or the doctor walking by, and not even touching my foot is excruciating. A podiatrist I was sent to early on purposely dropped a piece of foam on my foot AFTER I told him it hurt when he walked by, and then laughed... needless to say, I never went back to see him, and later was told by and Er doctor that this guy only was fit to make a "prescribe" shoe orthotics, and only had a 2-year degree! (some are actually doctors, this guy was not!)

Well, I hope you realize how much your post is appreciated! I'm not in a wheelchair, although there have been days, weeks and months of my life I've pretty well been in bed, so I know what that is like!

Grew up with Graves' disease, and spent much of my time in the hospital since I was 7 years old. I was able to work for a while, and thought I was over it, then got rear-ended in a car accident and have never been the same.

I wonder, of everyone here, how many others have thyroid problems (low or high levels)? Anyone have surgery and or radiation to treat thyroid? Been on synthetic and/or natural thyroid meds? I wonder, if like fibromyalgia, there might be a connection?

Does this run in families? (My mom had an injury while pregnant with me, I'm told, and she had some nerves clipped because the pain was unbearable.) A soda bottle fell at the grocery store on her foot, and she did have surgery while pregnant with me... Make one wonder if this might have a hereditary pre-disposition?

I want to know SO much more!

Any good articles, data, etc. from GOOD resources would be greatly appreciated! I have a strong medical background, and am published in the medical community as well. I did manage to make it through a lot of my schooling, yet would like to complete my PhD in Naturopathy, emphasis in herbology and kinesiology.

Frogga, thank you again for sharing! I left myself out of the relationship arena for SO long... seemed to take FAR too much energy for me... and I feel I do better alone, but do get a bit lonely from time to time.

Until a gal from my church came to work for me, and she'd only seen me on "good days" before then, she couldn't understand why I couldn't get up, or even why I was on disability... Now she kinda gets it, but I hid it pretty well. Few people in my life have any idea how much pain I'm in, the muscle jerking, etc., and I found I may have even held some of this back from my doctors. I might have told them about it, but I never really let anyone see me at my worst, nor did I feel up to being around anyone... too much effort when in a lot of pain to explain my heath issues to someone, or a lot of people. I've even made a form to email to new doctors with my medical history, medications, allergies (which I have MANY - food and medications, pollens, etc.) I quit going to most friends' homes because of food allergies (even someone cooking with olives or olive oil and some other foods can put me into anaphylaxis.

I've never seen a doctor's intake form that had enough room for my allergies or surgeries! Always had to attach it or write it on the back or the form.

Anyone else seem to be allergic to a LOT of things? Have a lot of surgeries?

So... Thank you and that's a bit about me.

I look forward to talking to others that are going through similar things, and if we help one another, perhaps we can unlock some keys to this painful nasty stuff we are dealing with!:grouphug:

Thanks again Frogga! You gave me the courage to share a bit about me!:hug:


Anyone else with thyroid issues? Back injuries?
RSD without a recent notable injury or no injury at all? RSD after illness? Flu? H1N1 or suspected H1N1?

Has heat or ice worked better for you?
TENS units? Help at all? Harm?

How do we keep this from spreading? (I've been told and read mixed things!) I want to prevent this from going anywhere else if at all possible!!!

Any good books?

I want to be an expert on this, and am more or less on fibromyalgia, CFIDS and post-Graves' treatment hypothyroidism - AND live with these three and more affecting my body... I'm NOT an easy patient, as if there is some drastic treatment or no treatment, I want to know why or why not, options, and work WITH my doctors, NOT be told what to do!

Anyone have short term memory issues? Cognitive issues?

klmullican
02-25-2010, 01:47 PM
Feel free to post your story, your RSD history, or an introduction to the forum members.

Welcome to the RSD/CRPS forum.

Hi! I'm not really sure how these forums work, so I'll have to play with it when I have time. If I don't reply right away or do the fancy friend things, please be patient with me.

My 16-year-old son was diagnosed with RSD this last Nov. 2009. He actually had it before in his right foot when he was 10, and it was awful, but he was miraculously healed after only 3 weeks. We took him to Texas Children's, which was a miracle that he got seen right away, and to another ped. neurologist, and they both diagnosed him and started him on Neurontin. When he was healed, they both said it was a miracle and to thank God, which of course, we did.

He's been having some residual pain off and on since then, but few and far between and still very active and normal. He even had some sprained ankles and torn ligaments in his right anke and it took longer than most to heal, but he was okay, thank God. Then out of the blue, it came back in his right ankle. We took him to the orthopedic who put him on Daypro or Ultram and said he would be fine in a few weeks. After a few weeks, he was worse and said that it felt like the RSD was coming back. Whoever heard of someone getting worse after they've been healed? But he definitely has it, although he doesn't have that horrible alloydia that he had before, and he is able to walk with considerable pain. He had the first nerve block at the end of Jan. which worked immediately but faded to nothing after 3 days. He had a 2nd nerve block a week later because his pain was back up to a 10 with taking 8 Vicadin a day. It was also immediately successful but lasted only 6 days. He's only taking 3-4 Vicadin a day now and still doing physical therapy 3 times a week, but it hurts. He's started having headaches and disoriented thinking so we're going to see the dr. this Friday. I'm wondering if he'll want to do another nerve block. I'm hoping he'll think a ketamine infusion would help and that he's able to either do it well or recommend a dr. in Houston that does. Thanks for this site. It's really helpful and seems very supportive!

Mycah
02-26-2010, 01:41 PM
Have been lurking for quite some time trying to learn from all of you.

I'm 51 and am not diagnosed. My skin has been burning, sweating, skin hypersensitive, hands/fingers red/bluish at times, watery blisters, finger tips very sensitive, caffeine intolerant. Oh, and did I mention, a pain in the rear to live with?

Just started with pain center after seeing 2 rheumys, 4 neuros, psych nurse, etc. Drs have ruled out multiple sclerosis, rheumatoid arthritis, lupus, and fibromyalgia.

Thanks for this great forum!

kate88
03-14-2010, 08:52 AM
Hi,

I have had leg problems since I was 11 (I am now 21), I had a series of relatively minor sports injuries. I was incredibly sporty, focusing most of my time either on athletics (the hurdles in particular) and on horse riding. By the time I was 15/16 they started giving me steroid injections every 3-4 months into my right knee, which kept me wallking until mid August (09). I had another steroid injection at the begining of September as usual however it didn't work. At that point they diagnosed RSD.

I have had problems controlling the temperature in that knee for a number of years, sometimes its really hot to touch other times it feels like a joint of meat you've just bought from the butchers. It also changes colour a lot and has done for a number of years.

I have now been on crutches for 7 months. I am in constant pain and on high doses of medication which I don't think is working at all, however when I don't take the medication I end up literally screaming my head off from the pain.

They have now said that they think I have got RSD in my right wrist from being on crutches (a couple of months ago they were saying I had tendonitis in both wrists from the crutches). So I'm having to wear a wrist splint a lot of the time.

My knee has reached the point where I am having to wear wither pyjama bottoms the whole time or linen trousers . On cold days I end up wearin the pyjama bottoms under the linen trousers. It is just too sensitive for me to have any other choices.

I am on a lot of medication and I'm not sure what is working and what isn't. In case anyone can make any recommendations having 'tried and tested' a lot of these no doubt I would love to hear your advice and opinions. Here is what I am on:

Naproxen- max dose,
Omeprazole- to deal with the side effects of the naproxen,
Lyrica- max dose,
Tramadol- max dose,
Paracetamol- max dose,
Quinine,
Citalopram,
Buccastem- max dose- to deal with the tramadol,
Oromorph- only when it flares up really badly.

I am also on a lot of supplements:

Dual Giinseng, Turmeric, Balance B-50, Multi Omega 3-6-9, Methyl B-12.

I would really appreciate any advice that anyone can give me.

Thanks,

Kate

Judy Ann
03-14-2010, 08:22 PM
My brother Mike is 38 y.o. and has had RSD for several years. He would get it in one limb then it would move to another. This past year, he did not have any 'flare-ups'. He had surgery a week 1/2 ago on his finger and now the RSD is back in that same hand he had surgery on. I dont understand why it was 'dormant' and now it is back? He lives in Buffalo, NY and sees a pain specialist, I don't know the name of the doctor though. Anybody have any advice or thoughts...it absolutely devestates my entire family when he goes through this. We feel so helpless...I just want to do anything I can to help. Any tips / advice would be great. Thanks....Judy

bpkaper
03-20-2010, 10:13 PM
Hello everyone. I found this site by accident, but I sure am glad. My husband who had a surgery over a year ago on his left knee, has developed RSD, that has spread through out his entire left leg, groin and also starting to go to his left arm. What a painful road this has been, literally. After months and months and countless visits to various doctors, we are undergoing treatment at Johns Hopkins. He has already tried a nerve block, which lasted all of 1 1/2 days. We go this coming wednesday to discuss the possiblities of undergoing a spinal cord stimulator inplant. He is scared to death. He also does not want to continue on the medications that he is taking as it really makes him wacked out. Not sure what direction to take. Is there anyone who has had the stimulator and would you mind talking either by email or even phone to us about this?
Before all this took place, he was a very active, hard working carpenter. This has not only taken a physical, but also a mental and emotional toll on him and the rest of the family.

Koala77
03-21-2010, 03:23 AM
Hello bpkaper and welcome to Neurotalk.

We do have a forum specifically for SCS (Spinal Cord Stimulators) and Pain Pumps. Actually it's a subforum in NeuroTalk's main Medications forum.

I've copied your post over there as I thought more people who have an interest in Spinal Cord Stimulators might see your post if it was in that specific area.

Here's a direct link to your post over there: http://neurotalk.psychcentral.com/showthread.php?t=117256

Jo*mar
03-24-2010, 01:55 PM
Hello & Welcome -

If you haven't posted in the main area of the RSD/CRPS forum, please do so, as sometimes new members get missed if they only post here.

Main area for the RSD/CRPS threads & posts-
http://neurotalk.psychcentral.com/forum21.html

2claws
04-05-2010, 02:56 PM
Hi everyone - I posted this in the main forum I think, and Rrae kindly sent me in this direction so as I dont have the energy to re type it all I have copied and pasted my story in as well. I feel happier already as I dont feel so alone :)
************************************************** ********

Im Jo and turn 38 next week. I am a single mum to a lovely 8yo boy, Harry.

I have no lower right arm (since birth) and use a prothesis - this has never caused me any real problems more the odd challenge. In June, as a single mum, Harry & I emigrated to New Zealand, all was great until Dec 2007. I had an accident and splattered the brachial plexus nerve in my left 'good' shoulder and arm. The pain, over the days, became unberable - after many doctors visits and later specialist visits I was diagnosed with CRPS in my left arm and shoulder. Then in Dec 08 I kept getting pains like a hot poker shoot up my left foot and leg, and also I would get a pain behind my eye like no pain I have experienced before. My specialist told me my CRPS had spread, I was so gutted .

A few months later I felt that familiar burning, stabbing and hot poker pain come in my right side but at a slightly less intensity than on my left, and it hurt to use my prothesis. I saw my spec again and got refered to another spec that specialised in anaesthetics and he confirmed that the CRPS had spread throughout my whole body - I couldnt believe it.

I have been on so many pain meds. Most made me feel like a zombee and some, like the gabbapentin, put weight on that I didnt want which also didnt help with the pain especially on my leg joints and back. Now I am on Oxycontin 4x day plus antidepressants and meds to help me sleep as pain is not condusive to good sleep. My only possible option is the ketamine coma but it isnt recognised in this country and I dont have the funding to go abroad to do it and it scares me to be in a coma for days, but the CRPS and what I read about it scares me even more.

At the risk of whingeing, I then find if I do get any decent sleep then the morning is hell because my body is locked up. Harry comes and sits on my bed for a cuddle and I have to tell him to get off because it hurts like hell where he makes the matress squidge down where he sits on it, and if he cuddles me Im like 'be careful' and it then breaks my heart when he goes have you had your pills mummy? they wont work unless you take them - he shouldnt have to worry about things like that at 8.

My saviour are horses. I love horses. I love their smell and the softness of their touch. I used to get frustrated when Id see people brush them like a tickle, thinking horses like a good decent brush, now Im like one of those people that frustrated me, so now rather than hold a brush I just stroke the horse. I guess it is good therapy and I am learning to focusing my mind to try and bypass the pain but my it is not easy.

My horse Drago, was a huge part in my rehabilitation along with my good friend. It is great to ride as when my back locks up the gentle moving of the horse makes my back and body 'give in' as it is hard to fight half a ton of horse.

My aim is to ride in the London 2012 Paralympics, and possibly the World Equestrian Games (WEG) in Kentucky later this year. My own horse is sadly injured (looking permanent) and I have been riding my friends horse JD, he is such an awesome dude, he takes such good care of me as he knows when I feel wobbly and if I lose a stirrup he will stop until I regain my balance. I now have the ride on a mare called Ella who is like a female JD and we are training towards London and WEG if we can do it in time. It is a long shot and training is and will be extrememly challenging with many tears, too much pain to want to think about but I have to have a focus as I feel if I stop I will just shrivel up into non existence - I have also found that having spent an Easter sitting down lots I feel worse body wise - even though I enjoyed the time with my son and great friends

I am very happy to have found this site as I think that there will be others in a similar situation, and having read through some posts, it is an opportunity for empathy and support - to be able to give and help others having a tough time and receive it.

So hi to you Shannon and the other members on this site, and fellow CRPS sufferers - I look forward to being part of the community.

Thanks
Jo

ps how do you put the icons in please? Ta

Rrae
04-06-2010, 01:40 AM
Glad to see you found the RSD forum! :)
Feel free to start a new thread of your own if you have any specific questions....I just want to make sure the RSD folks have seen your introduction! You've been through SO much!

You asked about how to post the 'icons'......
Are you referring to the little 'smilies' (funny characters) or are you wanting to create an avatar for your profile?

My brain is shutting down for the nite :o, so I'll try to help you with that tomorrow k! Or maybe even someone else will come along and shed some light....
When I first joined this wonderful forum, it helped me alot to look thru the User Control features and FAQ's.......I'm amazed at how many things are available here! If I'm not mistaken, you may be limited on what you can do until you reach 20 posts...... You can go to the FAQ page (at top) and use the 'search' feature and key in words that pertain to your questions and you may get good instruction there.
I'll be checkin back with you soon

Rae
:hug:

2claws
04-06-2010, 05:21 AM
Glad to see you found the RSD forum! :)
Feel free to start a new thread of your own if you have any specific questions....I just want to make sure the RSD folks have seen your introduction! You've been through SO much!

You asked about how to post the 'icons'......
Are you referring to the little 'smilies' (funny characters) or are you wanting to create an avatar for your profile?

My brain is shutting down for the nite :o, so I'll try to help you with that tomorrow k! Or maybe even someone else will come along and shed some light....
When I first joined this wonderful forum, it helped me alot to look thru the User Control features and FAQ's.......I'm amazed at how many things are available here! If I'm not mistaken, you may be limited on what you can do until you reach 20 posts...... You can go to the FAQ page (at top) and use the 'search' feature and key in words that pertain to your questions and you may get good instruction there.
I'll be checkin back with you soon

Rae
:hug:

Hi Rrae
Thank you for offering hugs and support, I dont know you but it feels like I do and it is a great comfort. Re the icons I will read the FAQs tomorrow and as for the avatar I hadnt even thought of that lol. When I look more I will see if I can upload a photo of my son and my horse and maybe one of me riding. One thing that challenges me with the riding is the tightness of the jodphurs - it becomes one very tough mental game!

My brain is half asleep at the moment - I went for a lay down but now cant sleep so have got up again, I will have a cuppa then try bed again - I find DLS messes with my body clock - you wouldnt think 1 hour made such a difference!

Been a harder day today as it has been raining and I dont know how the cold and damp affects other RSD sufferes but I find damp days far more challenging. I always feel tentative at this time of year as we head into Winter (my friends I have in the UK I understand are having cold snaps and snow in the middle of their Spring!)

Another Q if you dont mind me asking do any of you get a deep and maddening itch that then becomes very painful to scrach? It drives me wild - showers exacerbate it and I hate the water touching my skin anyway but my feet, back and chest itch to the point I can make it bleed and I havent found a way to relive it yet apart from scratch. I do get funny looks!

I often get hot and cold sweats when I push myself and at the airport, on the way home, from Oz to NZ I did look and feel pretty rough, and the custom lady took one look at me and asked whether I had Swine flu! I hadnt but my gawd did the people around me stand back really fast. I felt eyes on me from every direction!

I look forward to reading more posts in this whole forum and thank you all again for your welcome. Id love to hear your stories, if they are in this site I will find them.....though I may need a point in the odd direction lol.

I have also passed this wonderful forum to a lady in USA (this lady leant me her horse for the Atlanta Paralympic games in 1996 - it was borrowed horses then) we havent seen each other since but have remained in touch and I believe the lady recently had to have a SCS implanted so I passed this on incase she hadnt seen it.

Enjoy your day, be strong, and for all those on a different time zone I wish that you have a bearable and hopefuly good night .
Cheers
Jo

gatorsmomma
05-12-2010, 03:25 AM
Hi, I did post in the new member introductions but then found this so thought I'd do the same here.

I have had CRPS/RSD for over a year. I am here for information, answers to my questions (hopefully) and to talk to people that actually "get it!"

Thanks for the site, I look forward to talking with you :)

rivin19
05-17-2010, 10:57 AM
Hi There!

I was diagnosed with RSD in my left foot in 2008. In 2006, myfoot had one day mysteriously swelled up and became really painful. I could barely walk. After 7 doctors, I finally found a one that listened to me and my symptoms, who didn't know what I had, but at least knew it was real. I found a great rheumatologist who treated me, and a great chiropractor who had experience in treating RSD.
I like to call my left foot my hobbit foot. We all know that RSD can make the area grow thick hair, and it was really swollen! I looked like I was related to Frodo :)

Come to find out, I have probably had RSD for more than 8 years, because I had the same symptoms in my hand in 2002, but it had been treated quickly because my brother's a chirpractor and although we didn't know what it was, he had the foresight to treat it with PT and TENS. It went down after about 6 months and hasn't come back.

In 2009 (whiule I was pregnant), I was released from care because my foot was so basicaly cured. No more sever pain, although the 3 years of swelling damaged the facia and cartlisdge in my foot, I no longer have extremem pain.

However, last week, I've started feeling the twinges of RSD pain in my right foot. And today, I can hardly walk. I'm going in two days to confirm. I'm hoping that with quick care, I'll be able to nip this flare-up in the bud!

kladams86
05-29-2010, 08:18 PM
Hi, all!

My name is Kerry and I'm 23 years old. When I was 13, in 2000, I was diagnosed with RSD in my left foot. At the time, I was the 2nd pediatric in the state of Maine (where I grew up) to be diagnosed with it, since it was so uncommon 10 years ago for kids to have it! It all began while training for my cross country team in high school, all I did was twist my ankle, and then all hell broke loose!

After a few years of tried and failed treatments and medications, I finally went into remission in 2003. I was able to get back to most of the things that I loved to do prior to my diagnosis. In 2006, I had a remission, and was able to get it treated almost immediately. By 2007 I was back into remission, and thought things were going great. Last June (2009) I was working with a client and she kicked me and broke my ribs. My RSD has since spread to my chest, and I have yet to get any treatment that works, which is so frustrating! I'm working on getting into new doctors, since I have moved away from my neurologist that I had been with for 9years.

I try to keep a smile on my face, while trying to block out the fact that every breath I take reminds me of the fact that I have RSD, and that it has spread away from my foot. I'm trying to get through graduate school, but it's going very slowly, as it is difficult to get up in time for class, and difficult to stay awake long enough to study each day.

Here's hoping for new and better treatments out there that will come our way soon!

DebDog
05-30-2010, 08:26 PM
Hi Diane, I am new and trying to write this has been a problem. I keep being thrown back to an earlier website. I will try one more time to write you. I do not understand how to manuever and communicate with other members. I have a user name (DebDog) and password that I registered for last night so I am not a visitor. Our story is somewhat similar. I have a 31 year old daughter and live alone. I am divorced and my mom died July 24, 2009. She was always the one who took care of me and believed in me and was always the one who was there for me. I am feeling the grief more than most. I was a supervisor with our local school system and my dr. forced me to retire in Sept. In addition to those changes, I also sold MY house yesterday and have to clean it out. The pain is out of control and everything in my life has changed. My SCS is moving around and is not stable. I am in acute pain with it and continue the chronic pain with the RSD. I have trouble walking and my headaches,etc. are getting worse. Every hair on my head hurts. I am having surgery on June 1st to have the SCS stablized.They are going to find the fatty area b/c I have lost so much weight that I only weigh 112 lbs. and it has affected the stablity of the SCS. Have you lost weight since you dev. RSD? Thanks for sharing your story about your family. It's good to know that other family members do not accept this disease. I don't feel so alone. Deb Dog in Louisiana

Mark56
06-03-2010, 04:55 PM
I spoke with my Sis Terri today about the forum. She asked that I try to share her story with you since due to the RSD she has endured starting with diagnosis in 1995 she has ultimately been losing her sight along with all of the other things others among humanity tend to take for granted. Due to RSD affecting her with numbness in her fingers as well, she is compromised both as to sight and the means to type well. She chuckled, chuckled mind you, when I asked whether she would join the Forum, because she cannot use the computer. I should have known, I just didn't think. :Blush2:

Terri's saga began with knee surgery back in the day before knee replacements were even dreamed of, and then a second, third, fourth, and then her fifth. All of this occurred before 1995. She was a chef and artist keen with a brush. She enjoyed running a kitchen. She was queen, and she cooked very well. No, she did not study at le Cordon Bleu, but Terri prepared many a dish pleasing to the palate. Physical therapy was her lot after surgery, some think too aggressively at the time, but she pursued it with gusto so she could return to work. That's what she did. Work hard. Work harder. The fun experienced being among people. The RSD struck.

Pain, swelling, lots of swelling, and infection set in. The knee work might have been OK had she been able to avoid the infection. Gangrene was the follow on. This is 1995. Meds were tried at the time even though it seemed the docs were struggling to understand her affliction. She held on until 1996, and we were there when Terri, 5'8" Terri lost her first leg at the hip. The RSD, of course continued. Pain, lots of pain. Always burning. Never stopping. And it didn't stop with one leg, symptoms spreading to the other leg, which Terri lost surgically in 1997. Her RSD was of such an advanced state, that her docs included her in medical journals and texts regarding the complexity of her disease saying she is one of a kind in this fabric of humanity. The symptomatic osteoporosis which invaded her courtesy of RSD had reduced her legs prior to each amputation to gangrenous flesh only, to the docs' amazement neither cartilage nor bone remained in the removed limbs. Terri became 2'6" tall. She now weighs 70 lbs. But you should see her pop a wheelie on her electric wheelchair. Awesome. And the smile that creases her cheeks, Priceless. :)

Now her demeanor has remained a bright spot of cheer for others as she has continued to paint or draw for the sake of sharing her blessings among those around her. Recently, she participated in a prescribed chemotherapeutic treatment generally reserved for oncology patients in an effort to stem the RSD tide. That trial failed her; nevertheless, Terri befriended many on the floor during the several days she was in residence. They had been searching for artwork to adorn posters and T-shirts for their floor so Terri set about to do it. They liked her ideas! :) The shirts are now in silk screen production for that hospital floor. Terri's cheer has stricken home again to the aid of others.

Sis has certainly not been without her trials as her body has continued to fail her. Symptomatically she has fairly defined RSD and the spasms she has endured reach ALL aspects of her body, even her blood vessels. Her heart has taken a toll due to the RSD spasms, and she has been resuscitated from an appointment with St. Peter 7 times, yet she persists. I told her today it has to be, HAS TO BE, because she was meant to do something more before "going home." Terri pointed to her t-shirt oncology project with a smile in her voice as she agreed "**** right!" [I deleted the profanity, but you get the point]. She doubts she could be revived again because her bones are too brittle from the osteoporosis to be pressed in a CPR maneuver.

I cannot reveal her full name or location because the meds she takes are far too controlled to risk it. She is prescribed 17 different meds per day, among which she takes for pain 30mg of morphine sulfate every hour, 400mg of what she calls pure morphine twice dailiy, AND the fentanyl for those times when pain is so excrutiating that she just can't take it. Sleep no longer comes except in fits and spurts, as she cannot rest and even the sleep meds I take would not begin to phase her. Heart meds a plenty, and on and on, but Sis prevails.

We have become accustomed to Terri being Terri as she is. So skinny now, her bones protrude everywhere. I tried designing a seat cushion for her to sit more comfortably and it seemed the trick for a few days, then the bones were making holes in her skin. Memory foams are more forgiving, but don't give her what she needs. I so wish I could help. We all wish we could help. She feels ready to meet God face to face, but His agenda is otherwise for now.

So, here I type, writing on Terri's behalf, thinking as I do about her that she has dealt with so much more than I, surely I can help bring her smile to you. :D Surely her grief has been much. Mine, not nearly so... if you have touched any of my prior posts, but then how can one compare the pain of any sufferer to another? Simply stated, pain is so subjective as to evade real quantification or comparison. Terri's circumstance serves to humble and to render me SO MUCH MORE GRATEFUL for the SCS implant I approach. She has been through the screening to determine whether SCS could possibly help her and the answer was a reverberating "I am sorry, this is not an answer for you, Terri."

She is willing to participate as she can, through me, to help any with their thoughts, questions, perplexity about the RSD she knows so personally. Her faith is strong, and she is a testament to one who, though stricken, has striven to help others. Thus, the hearty "Howdy" from Terri to you all!

Proud of one whom I love,
Mark56 :)

Lisa in Ohio
06-03-2010, 06:08 PM
Mark, what an amazing tribute to a beautiful person that you have been blessed to know. Thank you so much for sharing the gift of Terri with me. Lisa

hope4thebest
06-05-2010, 12:27 AM
Mark,
Please tell Terri that I am strengthened and inspired by her spirit and by your love and appreciation for her.
Sending hugs of gratitude
Hope4thebest:hug:

janeqarmywife
06-21-2010, 02:05 AM
i've read alot on this forum, but just decided to join. I was dxd with RSD about 8 weeks ago, although i believe i have had it since foot surg November 2009. I have had 2 epidural sympathetivc blocks, the first one affected the wrong leg lol., and the second went horribly wrong. The nurse forgot to give iv fluid, and my bp crashed, had to get injected with amphetamine to bring it back up. Also, only about an hour and a half of relief. Got MRI of foot done, it shows bone marrow changes in my heel, toes, and fibula. This is freaking me out. I have been complaining of something "wrong" with nerve since surg. Have not been able to put my foot in water, wear a sock/shoe, and my surgeon just kept telling me that iat would probably get better. Now my foot is purple, ice cold(I call it the creeping death) and color/cold is moveing into my calf and knee. Just had a second opinion for my foot problems and found out that I need another surgery, I have several torn tendons again, probably caused from bad surgeon the first time. They wont do it though untill I get the nerves under controll. My new doc wants me to see another PM to have some sort of electrode thing implanted in my spine. I am scared to death due to bad spinal blocks before.
AND, now i have noticed in the past week that I have a really large, painful, moveable mass(breast tissue?) in my left breast, Same side as my RSD foot. I have also had a constant headache for 22 days now(on the right side of head), and 2 days late on period. Basically feel like crap. My husband just got home from Iraq a few weeks ago, and I feel terrible for him to come home to me having all this going on.:(

I know this is alot, and Im new to this so hopefully you will be kind enough to read and reply, even if it is just to tell me to keep it simple lol.
The main thing is this electrode implant thing, and the bone marrow, and the breast thing that has me scared to death...:eek:

Lisa in Ohio
06-21-2010, 08:14 PM
Hi! I am so sorry that you have been inducted into this circle of RSD, but please be assured that you have brought your fears to the right group of people. I have found many angels here who have helped me so much, and have taught me how to better live with this disease. RSD is a scary thing and it is really ok to be frightened. Your body is undergoing many changes that you have never expected to have to deal with. I am also waiting for approval for a spinal chord stimulator (WC), and there is a good place in this forum to get education about this. The main thing is to learn all you can about this disease, find a good and caring doctor, and not to be afraid to take control of your health. The cold feeling and skin color changes are part of this. I am having a difficult time even tolerating any air conditioning this year, and always carry a shaw or sweater with me. I have RSD in my left arm, shoulder, creeping up my neck and head and in my right foot and leg. Hypersensitivity is also a big part of this. I always joke about having to have "big arm" clothing so that nothing touches my arm. I do not know about bone marrow changes, that would probably be a good question to direct to MrsD. I would probably make an appointment with an OB/GYN about the breast mass and also the late period. These may just be connected to a hormonal thing and that could be what is causing your headache. Glad you found this site and hope to hear more from you, Lisa

Mark56
06-21-2010, 09:45 PM
Hi Jane-

You are in a good place here where care abounds and folks will openly share their thoughts and concerns from the perspective of lived experience. Lisa offers wisdom in regard to the matter of taking all of this carefully in front of your doctors for their recommendations. If there are questions I can refer on to my Sis, I will be happy to do so.

I imagine your husband is just happy to be back in the states with you, and I hope and pray he is alongside you with love, concern, and help to deal with your health needs. Thank you to both of you for the service your family has given through the Army. Our son is mid-East Army deployed right now, and we have a bit of an understanding about the family cost associated with long distance connectedness.

All the best to you!:hug:
Mark56

Neoplasm
07-11-2010, 09:00 AM
Hi. Just joined here...

Been seeing a number of consultants. Rheumatologist suggested, and the Neurologist agrees that I have RSD/CRPS.

I'm not completely convinced. The diagnostic criteria seem a bit too vague. Seems you could squeeze quite a lot in there. For example, I don't have any oedema, and the pain I have is not burning.