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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

RSD Interviews part 2

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Unread 12-16-2008, 08:55 PM   #1
msdrea83
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Default RSD Interviews part 2

Questionnaire for RSD sufferer


1. How long have you had RSD? 19 1/2 yrs
2 What was the initial cause?.Left Ankle sprain/ lumbar sprain
3. What treatments/medications have you tried? How effective have they been?
TREATMENTS: I have had several spinal cord stimulators (different problem with each one)
Bexar blocks in left leg (first couple worked awesomely until they wore off), injections of steriods in bk none of the 30 or so i have had over the years seemed to do much.
MEDICATIONS: There have been so many meds. but the ones i have found work the doctors will never give u more then 1 scrip of them. They are Dilaudid and percaset (sorry 4 bad spelln) these 2 meds worked great help alot with the pain.
4. What are your symptoms? 3 of my extremities a cold to touch, always in constant unrelentless, sevier burning stabbing pain, Spasms that actually make the feet and 1 hand curl.
SECONDARY CONDTIONS DUE TO RSD: I have developed degenerative arthrosis, hypertention, migrain, peripheral neropothy
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.
No I have only tried the scs, medications, and the bexar blocks. I have used a tens unit that does help a little bit
6. What makes it worse/better? WORSE:To much, movement, sitting , standing, walking, clod weather, 72 hrs before a rain within 100 miles of me, wind, clothing, to many blankets on the bed, STRESS is a major contributor./////
BETTER: Medication, heat, recliening.
7. How does RSD affect your daily and social life? Well since I have gottn RSD i do not go out in public much cause of the pain thing. I try to avoid social gatherings because it is very depressing when ppl always ask u how u r feeling, feeling sorry for you cause you walk with a cain , walker, even wheelchair at times.
8. Are you experiencing any emotional/psychological effects? If so please explain.
Yes. Haven RSD is chronic as you r aware of. But when you have a doctor that doesnt understand the condition and tell you that what you r feeling is not what is going on.That what you say is happenin is all in your head you get very depressed, yes you think of suicide alot. If all the pain is in your head and not your body why cant you just stop it?
9. Does RSD affect your ability to work? I am unable to work because I can not sit/ stand more then 30 minutes at a time. Can not walk further then 50' at 1 time. With all the meds. You memory is not all the greatest. The medication they place you on for the migrains actually makes you forget works and lose track of thoughts.
10. Have you been told by others its all in your head? If so by who? SEE #8
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc
I am havening trouble now finding a doctor that actually treats rsd because of the length of time I have had it. The dr. who know this condition know that the longer you go without proper treatment the harder it is to controll
12. What tests were run to find diagnosis?Back in 1989 they performed a 3 phase bone scan which showed the uptake, Thermography



Andrea, I am 44, and have had RSD for 14 years. I am so glad that you are writing a research paper about this disease, as it definitely does not get the coverage it deserves! I have included my full name, e-mail address, and phone number for you in case you should want to ask me further questions.

1) I was diagnosed in October, 1994.

2) The trigger was carpel tunnel surgery in my right wrist. I waited until I couldn't go from a pen to the computer to have the surgery. I had circulation problems shortly after the surgery, and then when they took the stitches out, I passed out from the pain. Since I had already given birth to 3 kids - all naturally (no pain meds at all), I felt I had/have a pretty high threshhold for pain.

3) I have been through the gammit of treatments. I've had numerous types of blocks - bier blocks, stellate, cervical, thoracic, & lumbar blocks. I've had 3-day hospital stays where medication stays in the arm to numb the nerves to stop them from firing. I've had the sympathetic nerve burned down (it grew back in 5 weeks). I've used all sorts of physical therapy, TENS units and others similar to it. I've used biofeedback, heat, heat sonograph, stimulator, and finally an intrathecal pump that gives me a mixture of dilaudid, clonidine, and bipuvicaine.

4) I have it full-body. It's in all limbs, my back, my neck, my face, my eyes (it feels like there's a scratch on my cornea when it goes in the eye), and now it's affecting my heart - causing different arrhythmia's. Mostly I have burning, throbbing, needling, sharp pain. I lose skin on the bottom of my feet, and have eczema on my legs. I often lose the circulation in my limbs, which I have to have a block to stop the nerves from firing, in order to bring back the circulation. For the last 8 months, it has been causing various typs of arrhythmia's in my heart. I've seen my cardiologist, and had numerous tests, and my heart looks like that of a 19 year old, which is good news. The bad news is that the RSD is causing it. I've spoken to one RSD doctor who knows it goes into the heart, but there isn't a cure or a treatment for that - so this is what I'm looking for right now, as any of the arrhythmia's could cause death (and they are quite painful.) I haven't found anything yet, but will continue to look. There appears to have been one study on RSD and the heart, but no answers came from the study.

5) The treatments that work vary. Sometimes blocks work.. sometimes heat works. BUT -- they are all temporary. Nothing helps in the long-term. You basically learn how to deal with it on a day to day basis, the best way you can. I think the best way is educating others and living as fully as possible.

6) I have tried everything from full holistic medicine (no help) to biofeedback - lots of help (it helps bring me down from a flare-up, allowing me to fall asleep for an hour here & there.) I have tried accupressure and accupuncture. I have tried vitamins, physical therapy, no therapy -- and I now find that swimming & stretching is the best therapy for me. Heat makes it better at times, but Ice ALWAYS causes reboun pain, that was worse than the pain I had before.

7) It affects my daily life, in that I can no longer work or do the things that I used to do. I'd say I've lost over 85% of what I used to do. I loved working. I can't do that anymore. I was always on the "BOARDS".. PTA, choir, booster, church SS teacher, choir, youth leader, etc. I do what I can now, but am not usually a board member, or anything that requires me to write things down on the calendar in pen. If there is something that I feel is necessary (like for my kids)..then I do it, but know I'll pay for it - meaning I'll have flare-ups. Most of the time, the flare-ups are worth it, because I'm not hiding from the disease, but living as best I can.

My social life is the same way. I do most things in the mornings, as that is my best time. I don't do much at night, because most of my energy is zapped by then. I spend more time on the computer (socially) than ever before, and yes, I've lost friends, because they don't know how to deal with "this" me.

8) I think everyone with RSD has depression at some point. I was lucky, as my pain doctor would not treat patients long term, if they did not see a psychologist or psychiatrist that dealt with pain patients. When I was initially diagnosed, the suicide rate was 63% by the 3rd year of having RSD! That's astronomical! I don't see my psychologist regularly anymore, but I still go in whenever I have periods of depression that last more than a couple of weeks, as I know I can't do this by myself - even with a supportive family and friends.

9) As I mentioned, I am no longer able to work. I am considered 100% disabled, and was the first person in the State of Texas to be given lifetime benefits through Work Comp for RSD.

10 & 11) Thankfully, no I haven't been told that directly. I have been in the hospital before, where doctors and/or nurses haven't heard of it, or hadn't seen it. I've been to the ER with flare-ups, and they have been afraid of giving me pain medication upon learning I have a pain medicine pump. Most have called my doctor to double check that it was ok to be treated. I have had a few people that I know tell me that they've "heard" that RSD was a mental disease, and not a physical one. I've then directed them to the RSD.org and RSDHope.org sites for further information.

12) Most of my diagnosis was clinical, however there were stellates that were done as a "test". I've since had bone scans (I am osteoporatic in all of my bones.) I have been seen by over 13 doctors, because of work comp wanting me to have 2nd opinions over and over and over again, and their doctors have actually told me that I have it full-body. Not one doctor has denied my diagnosis - even though I'd love for them to find out it's something else - and that it's CURABLE!!

Questionnaire for RSD sufferers


1.How long have you had RSD?
Well...that I don't actually know. I've had alot of leg problems since I was 2 and I was misdiagnosed many, many times...so technically it could have been since I was two. It didn't start controlling my life until I was about 10-11 years old, though.
2.What was the initial cause?
I had a severe bone deformity in my foot, which initially started it, then, after a bad cooking accident I ended up with 3rd degree burns on the same foot that had a bone deformity, which made everything massively worse. I then had surgery in July 2007 (to correct the bone deformity which doctors thought was causing the pain) and they didn't give me a nerve block, so my RSD got worse. From my left foot it spread to my right foot, then both knees, then my hands, hips and lower back. I was actually only diagnosed in February 2008.
3.What treatments/medications have you tried? How effective have they been?
I've tried physical therapy, pool therapy, AFO braces, sports tape, etc. and the therapies have helped a little bit in the beginning but my RSD still spread and got worse. I've taken alooooot of medication over the years so I don't remember some of them but I've been on percacet (Sp?), morphine, naproxen,Amitryptyline, tramacet, tramadol, tylonol 3, tylonol extra strength, etc. none have really helped alot with the pain, but if I didn't take them I imagine it would be alot worse.
4.What are your symptoms?
obviously pain, stiffness, swelling, increased sweating, brittle nails, changes in hair growth, memory problems, fatigue, lack of energy, loss of mobility/range of motion, Allodynia, Hyperalgesia, dystonia, etc.
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.
I've tried correctology and acupuncture...both have not worked.
6.What makes it worse/better?
for some reason, loud noises (such as concerts or loud music) makes things worse. Cold, light touches, caffeine, etc can set off flare ups. Heat is one of the only things that makes it feel better. Doing physical therapy in the pool is one of those things that can make things better and make things worse, depending on the day.
7.How does RSD affect your daily and social life?
I used to be a very active person, I was a runner and a dancer before RSD took over my life. Now I'm constantly bedridden and isolated in my home, so my social life isn't the greatest. I try my hardest to hang out with my friends, but I live a little farther away from them, so if I can't drive or if they can't get a ride, then I'm stuck...which happens alot. There are alot of times I can't attend school (I'm a senior in high school) because I can't get out of bed. I barely have time for anything because I'm always doing PT or I'm trying to sleep off the pain. I find it very, very hard to concentrate which makes doing homework hard.
8. Are you experiencing any emotional/psychological effects? If so please explain.
I experience depression, isolation, anxiety, low self esteem and fear of the future.
9.Does RSD affect your ability to work?
I cannot work a part time job because I feel that I'm not reliable because I can't predict when my flare ups are going to happen. I also can't find a job where I can sit down the entire time and don't have to use my hands as much.
10.Have you been told by others its all in your head? If so by who?
I've been told that it was all in my head by doctors, friends (well, obviously they're not my friends now haha), and ER doctors.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.
I haven't really been denied treatment but I've gone to the ER/clinic countless times before and the doctors would just send me away without really doing anything after they checked for breaks or sprains in my joints.
12.What tests were run to find diagnosis?
I've gotten CT scans, bone scans, xrays, bloodwork, etc. done and nothing ever showed enough to diagnose me with RSD. After the bone scan, my orthopedic surgeon diagnosed me with chronic pain, and then in Feb. 2008, I went to a rheumatology clinic and the rheumatologist diagnosed me with RSD after a consultation.

Questionnaire for RSD sufferers

1. I've had RSD since May '08, so six months (if I did the math right. :P )

2. Um, the initial cause of my RSD is sorta strange. I guess you could call it a crochet accident. (Crochet is like knitting) I was pulling stuffing out of a stuffed animal I was making and twisted my wrist the wrong way--it went pop-crunch. The doctor said a tendon must have snapped over a nerve and started all this.

3. I've been in Lyrica, Neurontin, and Elavil--none of which has worked, and all of which have had intolerable side-effects. Lidoderm does work though, and that's the only way I can get to sleep. I've also done PT and OT, and been through a day-treatment program for RSD. I now have full function back, but my pain is still unmanageable.

4. Symptoms are: Allodynia, Hyperalgesia, color change (mottling and purple discoloration in my palm) extreme, constant pain, dystonia, stiffness, shooting pains, stabbing pains, swelling, increased hair growth, increased sweating, temperature changes, poor circulation, occasional tingling and numbness, and feeling as though my arm has been lit on fire. Secondary side effects of RSD for me include: memory loss, and word retrieval issues. (I think that's all of them...)

5. I tried acupuncture, it did NOT work at all!

6. Heat makes it better. Cold, air, fabric, pressure, light touch and deep touch make it worse, along with just about everything else. :/

7. Harder to hang out with friends and family (people always touch my arm or stuff like that and don't understand why I'm in pain.) And I had to defer college for a year to deal with this, so all that stuff too. Not to mention the 1.5+ hours of PT and OT I have to do everyday, and making accommodations for when my arm stops working.

8. Emotional and psychological effects: Feelings of isolation and depression, anxiety, feeling dejected, feeling hopeless about any chance that the pain will go away, frustration, occasional anger. I'm not sure Insomnia counts, but that too.

9. I've been volunteering, and I can barely do that. I don't want to apply for a job because I wouldn't want to be a bother to whomever I work for. I don't want to have a job and not be able to do most of the things--making the other employees pick up the slack I'm leaving.

10. Two of my doctors, a few friends, and both my brothers. (One of my brothers still thinks it's all in my head.)

11. I don't think I've ever been denied treatments.

12. Um, MRI, X-ray, EMG, "diagnostic" cortisone shot and others. None of which worked. A consultation with an pain specialist was how I originally got this diagnosis (after three months of searching).

Questionnaire for RSD sufferer

1.How long have you had RSD?
3.5 yrs
2.What was the initial cause?
Car ran over my rt foot and heel
3.What treatments/medications have you tried? How effective have they been?
Initial physiotherapy too agressive on the rt calf caused CRPS to spread up leg.
Blocks 14 rt leg 4 bilateral, semi successfull (helped the cold some), may have caused spread to upper back area,
gabipentin made my eyes go blurry and caused me to forget words in the middle of what I was saying, (havent recovered)
lyrica worked for awhile caused suicidal depression
I now take topriate instead with no bad effects,
lidocaine subcutanious infusions, more pain relief than the rest,
200mg trazadone for sleep and nerve pain at night works better than the amitriptyline did,
baclofen for cramping and muscle seizures I take 40 mg a day, it could work better.
Citalopram I take for depression but it also helps the nerve pain,
Ibprofen 1200 mg for break through as well as flexeral or T3's I am intollerant to most narcotics.. break through measures dont help much.
4.What are your symptoms?
Burning, deep deep ache, cold limbs, edema, shiney skin, jabbing, stabbing pains, muscle seisures, color changes, nail changes, hair changes, movement disorder.
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc?
SRT/Biofeedback, vitamins and antioxadents, all with helpful results so I continue with them daily.
6.What makes it worse/better?
Staying on my feet too long hurts Cold weather hurts, any bumps or bangs can be agony, having my legs and arms in the down position during an extended activity agravates the pain. whereas warming my limbs, lidocaine infusions, pain meds, medical MJ, elevating my limbs, resting, pacing myself.. these help.
7.How does RSD affect your daily and social life?
How does it not? I walk with 2 canes I hardly ever get out, I don't have much of a life outside my home, most of my prior relationships have gone by the wayside.
8. Are you experiencing any emotional/psychological effects? If so please explain.
I am depressed alot.
9.Does RSD affect your ability to work?
Yes I am unemployed and have been since getting RSD.
10.Have you been told by others its all in your head? If so by who?
I was told by the head of cardiology (Royal Jubalee hospital in Victoria BC)that I was making up a fictacious disease to get attention and meds that RSD or crps most likely didn't even exist because other wise he would have heard of it.. he then gave me a radial angeogram (surgery) without anesthesia because he thought I was faking.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.
Yes denied "humane" treatment please see # 10's answer. I have also been denied treatment because I am a WCB client.
12.What tests were run to find diagnosis?
Bone scans, MRI's, blocks.


Hi, Id be happy to answer yours. I hadnt seen it before.
I have had rsd for 5 Years 4 months
Cause fall in to sprinkler well top was left off..
jtreatments
I have had 21 lumbar blocks
55 infusion outpatient
two 5 day ICU ketamine infusion
One 5 day ICU lidocaine infusion
The coma treatmetn in Germany
Escalating ketamine treatment in Tampa
Tens
Pt -evrrything but hbot- thats next hopefully.
Symtoms
They have change over time, I am now having large lesion-my constant is burning pain in side, not outside. spine buring bone pain, spasms,weakness severe, I can no longer support myself to stand from the bath for example.
I do have severe flareups of inflammed red skin with alot of leaking cells, flluid collection on back, fllanks. approximatly 10 pounds of flluid. I once had 13 pounds of fluid in my legs. Dr. Schwartzman got that out with a 5 day icu treatmetn.
What make mine worse is stress, weather but number one is activity. I can stand about 20 minutes before the pain is unbearable even with major meds. I have very weak left arm, and facial pain on left side, jaw too, teeth. MY legs are always in aching pain.
What makes it better. Rest I have to rest on heat about 6 hours aa day on a good day.
Have I been told its in my head for 1.5 years in the beginiing.
Have I been denied treatmetn- yes for my lesions at a major hospital in fla.
Emmotional problems-depression from loss of previous life, some paranoia from all my meds. i beliviie
Effect on life: My life has been affected in every way imaginable. we have no social life, my marriage has been strained, I can not work I am not allowed to drive due to strength and type of meds. etc
Tests: I have had every test done on me. Bone scan, vibrations, heat /cold, 10-12 thermographs,xray, mri, diagnostic lumbar block, I can think of them all , emg, etc. all of them.
Good luck to you Msdrea. Sincerely, mb

Questionnaire for RSD sufferer


1. How long have you had RSD? 5 years 2 months
2. What was the initial cause? Wrist surgery
3. What treatments/medications have you tried? How effective have they been? 3 stellate ganglion blocks at 2 month intervals - very effective; baclofen - good; clonodine - very effective; nortriptylene - not effective; 60 visits with occupational hand therapist - moderately helpful.
4. What are your symptoms? At first, swelling, discoloration (purple), intense itching which turned to burning, changing temperatures in my hand, excessive hair growth on arm, cramping, trembling, fingernails grew like crazy, skin turned thin and papery, joints wouldn't bend very well, high blood pressure, MAJOR fatigue, depression, sleeping problems, fogginess. I'm sure there were other problems, but I can't remember. Five years later my main problem is that I can't close my hand and make a fist, and my hand is still atrophied and weak. It aches and/or burns occasionally, but it's not too bad. Emotional/sleeping issues are mostly gone.
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc). No
6. What makes it worse/better? Cold makes it worse; warm makes it better; hot makes it worse. Gripping something for a long period of time makes it worse.
7. How does RSD affect your daily and social life? At first it impacted my life in every aspect - couldn't work because of physical problems mostly; didn't desire to socialize because of emotional impact. Now, it's just difficult doing things like counting money or doing anything with small items (like holding M & M's!)
8. Are you experiencing any emotional/psychological effects? If so please explain. See above
9. Does RSD affect your ability to work? At first I couldn't work; after six months of blocks and treatments I started easing back into work. I am back to work about 30 hours per week. I could probably do full time, but I choose not to.
10. Have you been told by others its all in your head? No
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)No
12. What tests were run to find diagnosis? Bone scan - very conclusive; water test to see if skin would shrivel (can't think of actual name) - positive.


Questionnaire for RSD sufferer.



1.How long have you had RSD?
Too long...3 1/2 years
2.What was the initial cause?
Surgery to remove bone from my right foot.
3.What treatments/medications have you tried? How effective have they been?
Good Question, I will need your direct email address to send you a list of everything that has been tried and the effects that it has had.
4.What are your symptoms?
Constant burning pain
Discoloration (also called molting) on my foot and both hips (it spread to both hips)
Abnormal hair growth...grows extreamly fast
Osteoporsis has been found in my right foot with a bone scan
Extreame sensitivity to touch
Unable to weather weather changes (pun intended)
Extreame sensitivity of cold
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
Massage
Acupuncture...this was really painful
Biofeedback, which was not all that helpful
6.What makes it worse/better?
worse:
weather
over doing it
stress
weather changes
rain
cold
other pain (migraine, allergies, ect) this is called diversional pain, basically I will have all the symptoms of a migrain, and my RSD pain gets worse.
touch
forgeting to take my meds
fight or flight situations
loud noises
vibrations
Crowds
Better:
meds
sleeping
resting
quiet
increased level of pain medication
7.How does RSD affect your daily and social life?
I am no longer to work. which was a hard pill to swallow, because a fiercly independent woman, and kills me to become totally relient on my husband. I am no longer able to wear cute shoes. It is hard to go shopping, and I only shop in places that are small...I have not been to the mall in 3 1/2 years. I used to love going to concerts, but because of the vibrations and crowds it is unbearable. Also, if pain is horrible, I cannot gather with friends. I have hard time with ADL's.
8. Are you experiencing any emotional/psychological effects? If so please explain.
of course, this disease takes and takes, and all of a sudden you realize you are no longer the person you wanted and worked to be. so, therapy and anti-depressants become part of your treatment plan.

9.Does RSD affect your ability to work?
Yes, I have not worked since June 2006
10.Have you been told by others its all in your head? If so by who?
Yes, twice. I am over wieght (not obese), and I was told that it was all in my head by the first pain mgt. doc I saw. She was a specialist in back pain not neurogenic pain. Then when I moved from VA to GA the first doctor told me it was not as bad as I made it out to be, and I just need to see a psychatrist.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
Yes, sort of, I had a doctor look at me and say, "Sorry, there is nothing we can do for you."
12.What tests were run to find diagnosis?
Bone Scan
EMG
X-Ray
Cat Scan
MRI
Psycologial testing


Questionnaire for RSD suffer


1. How long have you had RSD? Jst over 3 years
2. What was the initial cause? No initial cause.
3. What treatments/medications have you tried? How effective have they been? I was on morphine,kethamine, actic,alot of sadation, nerve blocks, herbal remidies, and the SCS. The SCS is the ony thing that has made the pain managable to date.
4. What are your symptoms? Pain, senscitivity,color change, tempature change really effects me.
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
Acupuncture, holistic, etc etc
6. What makes it worse/better? SCS- better everything else worse
7. How does RSD affect your daily and social life? i cant socialise, walk long distances, sit down for long periods, wear jeans socks etc
8. Are you experiencing any emotional/psychological effects? If so please explain. Yes i was diagnosed with bipolar disorder as a result of chronic pain
9. Does RSD affect your ability to work? Yes, i cant hold a job/study as i need long periods off to go into hospital or days of for apps
10. Have you been told by others its all in your head? If so by who? Yes, doctors, family, people from my area.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.) Yes, ER, GP's, etc
12. What tests were run to find diagnosis? (nerve blocks, beers block, mri, bone scan, x ray, ct)



Questionnaire for RSD sufferer


1.How long have you had RSD? I was diagnosed with RSD 3 yrs. ago
2.What was the initial cause? I had tendonitis in my right wrist and had to have surgery and the surgery caused it, supposedly.
3.What treatments/medications have you tried? How effective have they been? I have had 4 nerve blocks, therapy, acupuncture, trial pain stimulator, been on Neurontin, Lyrica, Lytoderm patches, Oxycodone, Seroquil, a number of depression meds, and nothing works for very long.
4.What are your symptoms? burning 24 hrs a day, sometimes I get a freezing cold feeling going thru my right hand, wrist and forearm, and I have to wear a glove all the time. I can't let air or the sun on it or it is excrutiating pain.
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc. I have had acupuncture treatment, 6 of them, and was told the RSD is too bad, it wasn't going to help me at all
6.What makes it worse/better? Nothing makes it better...air, sun, bumping it, water from the shower, winter time...all gets it flaring up
7.How does RSD affect your daily and social life? well I lost a big part of my life when I lost the ability to use my right hand, wrist and arm. I am right hand dominant and I felt like a baby just learning how to eat and do everything with my left hand.
8. Are you experiencing any emotional/psychological effects? Sometimes I get real emotional.
If so please explain. If I am trying to do something with my left hand and I am having difficulty, I feel so helpless.
9.Does RSD affect your ability to work? Yes...I can no longer work....I am on Social Security Disability.
10.Have you been told by others its all in your head? Yes If so by who?The doc who did the surgery on my wrist for the tendonitis. 3 dys after the surgery I told him how my hand was feeling and he said its going to feel like that after surgery. Then when it was still like that 3 months later he didnt come out and say it but I could see how he reacted when I told him it was still burning really bad.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc). No not denied treatment but felt like I was being hurried out of the room. My pain mgmt doc would walk in the room and woudnt even ask me how I was doing, he just wrote out my prescriptions and said he would see me in 3 months. The last time I saw him, I told him I thought it was spreading up my arm further and he told me he did not perform miracles he was just there to help me manage my pain....that was the last time I went to him.
12.What tests were run to find diagnosis?
none....I finally found a doctor at the Olympic Rehabilitation Center in Birmingham AL...she has Olympic athletes that have gotten RSD due to injuries and she just looked at my hand and wrist and she knew.

FOR RSDERS....

1.How long have you had RSD?
I've had it for nearly four years
2.What was the initial cause?
I had a BMX accident which "broke" my arm. It later spread to my legs after breaking my foot.
3.What treatments/medications have you tried? How effective have they been?
I've done everything from the medicines to nerve blocks and now I have two SCS impants.
4.What are your symptoms?
I get all the symptons...lucky me. I got the swelling, dicoloration, sweating, PAIN, ulcers.
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
I did biofeed back once and it didn't help.
6.What makes it worse/better?
Effort. I've learned that to overcome RSD you have to put your whole heart into just wanting to survive. I know that sounds extreme but it's hard and to live with it is hell.
7.How does RSD affect your daily and social life?
I guess you could say I have more respect for the disabled, it's very easy for me to talk to them now. I don't put up with people who our self centered anymore, lifes to great for people to think about themselves all the time.
8. Are you experiencing any emotional/psychological effects? If so please explain.
I wouldn't say I am.
9.Does RSD affect your ability to work?
Oh yes. I finally got a job at Wendys, but I have to take breaks often.
10.Have you been told by others its all in your head? If so by who?
Yes I have, and by a doctor. Honestly I felt as though this doctor couldn't be wrong and when he couldn't help me he just dismissed me by saying it was in my head.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
Never denied, but I have been pushed to the back burner ecause they didn't know what to do. They have never given me the medicine to ease my pain at the worse times though.
12.What tests were run to find diagnosis?
Bone scan, MRI, Cat Scan.


FOR RSDERS....


1.How long have you had RSD?
ALMOST THREE YEARS NOW
2.What was the initial cause?
I FELL ON SOME ICE AND BROKE MY RIGHT ANKLE
3.What treatments/medications have you tried? How effective have they been?
OH BOY I HAVE OF COURSE HAD THE SPINALS DONE SEVERAL OF THEM NEVER LASTED MORE THAN 24 HOURS IF THAT. I HAVE TRIED MORE MEDICATIONS THAN I CARE TO THINK ABOUT ONE EVEN LEFT ME UNCONSIOUS FOR 3 DAYS NICE UH,? THAT WAS ONE WAY NOT TO FEEL PAIN, I HAVE BEEN THROUGH MORE PT FOR DESENSATZATION, I HAVE A SPINAL CORD STIMULATOR THAT IN ITS SELF HAS CAUSED ME A MAJOR NIGHTMARE. I AT THE MOMENT AM ON PAIN KILLERS, LIKE OXY, METHADONE, ALONG WITH ABOUT 8 0R 9 OTHER PERSCRIPTIONS, I ALSO WERE A PAIN PATCH 12 OURS A DAY. THEY WANTED TO BURN MY NERVES AND I REJECTED THAT.
4.What are your symptoms?
WELL LETS SEE, I HAVE PAIN AND MORE PAIN, BURNING, SWELLING ONCE IN AWHILE, WHEN I GET MAJOR FLAIRS MY FOOT CHANGES COLOR AND THE TOES CURL AND MY FOOT TURN INWARDS, SPASMS, AT TIME THE FOOT IS VERY COLD. AND OTHER TIMES THE INSIDE ACHES SO BAD LIKE ITS FROZEN ONLY TO BE WARM ON THE OUTSIDE, NOW IN BOTH LEGS I HAVE A NUMBING BURNING PAIN, THAT HAS TRAVELED UP BOTH LEGS TO THE HIPS. DAYS I CANNOT PUT SHOES ON, I HAVE TO WEAR SLIPPERS. ONE OF THE STRANGEST THING TO ME IS THERE ARE DAYS THAT I SWEAR I CAN FEEL ELECTRICAL CURRENTS THROUGH THE FLOOR THAT GO INTO MY FEET. WATER FROM THE SHOWER HURTS, I CAN ONLY USE CERTAIN BLANKETS TO SLEEP WITH THAT WILL NOT CAUSE EVEN MORE PAIN. AND MANY OTHER THINGS
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
AT THIS TIME NO I HAVE NOT, FINANCES HAVE BEEN A MAJOR ISSUE AND WHEN I HAD INSURANCE THEY WOULD NOT PAY FOR THAT OPTION FOR ME, BUT I HOPE IN THE FUTURE. I AM WILLING TO DO WHAT I CAN TO STOP THE PAIN!!!
6.What makes it worse/better?
YOU KNOW THATS A HARD QUESTION BECAUSE WHAT WORKS ONE DAY, DOES NOT ALWAYS WORK THE NEXT
7.How does RSD affect your daily and social life?
WELL I WENT FROM A VERY ACTIVE FUN LOVING WOMAN WHO WAS ALWAYS ON THE GO, LOVED SPENDING TIMES WITH LOVED ONES AND FRIENDS, NOW I HAVE BECOME A PERSON THAT IS MORE CONCERNED ABOUT RUINING SOMEBODY ELSES GOOD TIME BY ME BEING AROUND, ALWAYS HAVING TO BE CAREFUL THAT MY LIMB IS NOT TOUCHED AND EXPOSED TO VIBRATIONS, COLD, NEVER MIND THE FACT I HAVE A HARD TIME WALKING IT SUCKS THAT EVEN GOING TO THE MOVIE THEATER CAN CAUSE PAIN FROM THE LOUD NOISE
8. Are you experiencing any emotional/psychological effects? If so please explain
.ANYONE WHO ANSWERS NO TO THIS QUESTION IS IN DENIAL! WHO WOULDNT! I FEEL LIKE A BURDEN TO OTHERS, I FEEL LIKE I DONT HAVE THE STRENGTH TO FIGHT IT ON MOST DAYS, I CRY AT A DROP OF A DIME, I HAVE BECOME MORE OF A HOMEBODY CONVINCING MYSELF WHO THE HELL WOULD WANT TO HANG WITH ME. NOT WORKING AT THE TIME HAS ALSO GIVEN ME A SENSE OF BEING USELESS. I HAVE HAD THOUGHTS OF ENDING ALL OF IT.
9.Does RSD affect your ability to work?
YES, EACH DAY WAS DIFFERENT SOMEDAYS IF I TOOK MY MEDS LIKE I WAS TOLD TO I COULD NOT FOCUS, OR CONCENTRATE, I WAS IN A CLOUD. SOMEDAYS I COULD NOT EVEN GET OUT OF BED, I WAS OUT MORE THAN I WAS IN. MY BOSS EVEN HAD TO BRING ME TO THE ER ONCE BECAUSE THE PAIN GOT SO BAD.
10.Have you been told by others its all in your head? If so by who?
I HAD A DR THAT I WAS PASSED ONTO WHEN MY ORTO MOVED OUT OF STATE WHO ACTUALLY WAS THE ONE THAT REFERED ME TO THE PAIN SPECIALIST AFTER HEARING WHAT WAS GOING ON HE EXPECTED IT TO BE RSD, AND HE WAS RIGHT SO I WAS DIGNOSED VERY QUICKLY, WELL ANYWAYS THIS OTHER ORTHO DR, BASICLY GRABED MY FOOT LIKE IT WAS NOTHING, TOLD ME NOT TO GO THROUGH WITH THE TREATMENTS THE PAIN DRS RECOMENDED THAT IT WAS PROB NOTHING BUT MAYBE A PINCHED NERVE OR SOMETHING ELSE...I GAVE HIM THE BENIFIT OF THE DOUBT AND I WENT TO THE NUROLAGIST HE WANTED ME TO SEE FOR TEST AND MORE TEST, AND THIS GUY ALSO BELIEVED RSD WAS SOMETHING THAT WAS IN PEOPLES HEADS, BUT HIS TESTS ALL CAME UP NEGATIVE FOR REASONS I WAS GOING THROUGH WHAT I WAS.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
ONCE I WENT TO AN ER DURING A MAJOR FLAIR THE PAIN WAS MORE THAN I COULD CONTROL, AND BECAUSE HE WAS UNABLE TO REACH MY PAIN DR HE DIDNOT WANT TO DO ANYTHING, BUT HE FOUND IN THE CHART THAT I HAD BEEN THERE ABOUT A YEAR EARLIER SO HE GAVE ME THE SAME TREATMENT THEY DID THEN. HE THOUGHT I MAY OF BEEN A DRUG SEEKER WHICH IS HOW THEY DO LOOK AT YOU. WHAT I HAVE FOUND MOST IS SADLY MOST NURSES AND DRS HAVE NO IDEA WHAT RSD/CRPS IS WHICH IS VERY SAD.
12.What tests were run to find diagnosis? I CANNOT EVEN TELL YOU ALL OF THEM I PRAYED THEY WERE WRONG BUT I HAVE SEEN SEVERAL PAIN SPECIALIST AND I AM STILL BEING TREATED FOR RSD
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Unread 04-14-2009, 01:18 AM   #2
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