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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)

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Unread 01-01-2013, 07:52 PM   #491
ginnie
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Welcome to Neuro Talk. This site has lot of different forums. Just take your time with navagation. After three years I am still learning. Nothing you tap can hurt anything so go ahead and explore. You can answer any post you want.
I understand your both have CRPS or RSD. I have PN which isn't as painful, but not so good either. Lots of support here, and if you need questions answered just post them. Newest therapy I know about for this was done by our military, with infusions of Ketamine. Some remissions reported. Many folks who have the condition will answer you in time. You make some friends here for sure. I wish you all the best in the New year, and less pain. ginnie
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Unread 01-02-2013, 10:37 PM   #492
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Hello I am a Newbee...A quick BIO- I was in a car accident in 2008. Ended up with a very rare disorder in my right foot. Fast forward... too many surgeries & Ice Packs and I was sent to a Pain Specialist by my frustrated Foot Dr in 2009. After a triple Phase Bone Scan I was diagnosed with RSD. Kdoser
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Unread 01-05-2013, 01:56 PM   #493
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Welcome to neuortalk. Sorry to hear you have RSD, but you are welcome in our group (family). Feel free to chime in.

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Hello I am a Newbee...A quick BIO- I was in a car accident in 2008. Ended up with a very rare disorder in my right foot. Fast forward... too many surgeries & Ice Packs and I was sent to a Pain Specialist by my frustrated Foot Dr in 2009. After a triple Phase Bone Scan I was diagnosed with RSD. Kdoser
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Unread 01-06-2013, 11:23 AM   #494
NJPineyChick
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My story started in 2004 with a simple left knee operation that refused to heal. I am one of the lucky ones who got a dx within 3 months, by going over my orthos head for a second opinion. Even so, I'd experience such rapid atrophy that my thigh muscles were producing near zero electro activity and it took 18 months of pt for me to learn to walk again. Since then, I've had 12 lsb, sometimes with remissions; developed allergies to neuronin and lidocaine; lost and regained use of my hamstring; and as the rsd moved upward, developed asthma, tummy problems, and allergies to everything.
My latest flare has encompassed my whole body and the neuros have decided it is fibromyalgia. Just started adding cymbalta to my drug cocktail. I still work, though do little else these days. My husband is a saint! I miss riding my horse and gardening, and hoping for better days ahead :-)
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Unread 01-06-2013, 07:00 PM   #495
Wibley
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I have been reading posts on this site for the last 3 weeks when my insomnia and high pain kick in and have finally decided to post about how my diagnosis of CRPS came about.
I had 6 ankle/foot surgeries (same leg) in about a 12 year time span, The last surgery was a double arthrodesis. Did fine for about 5 years, then fell off the walkway to my house ( only 2" tall) and really twisted my ankle. Had the usual x-rays, MRI scans, in a boot for 6 wks, casted for 8 wks, still not healing.
I was then sent to a trauma surgeon who then told me I was in BIG trouble. Oh Yea ! When all was said and done, I went in to surgery#7 for 7+ hours, had 13 screws, 8 fractures, 5 bone fusions and now a triple arthrodesis.
Now I have no wt bearing for 16 wks, went in to get cast removed, bones not healing, 4 more weeks in cast. After that time he took the cast off and I started PT. Only allowed to WT bear in the pool. Well I spent 53 weeks in therapy, at the end I could wt bear/walk for 15 mins max with crutches. Next 3 visits to surgeon no change, x-rays a tiny bit better, the fusions did take well. So now I can walk 10 ft without crutches but need things to balance against, since I have no balance at all.
My surgeon sends me to an Anesthesia pain Dr. 4 weeks ago, after a physical and review of all tests, diagnosed with CRPS. I have had 3 lumbar sympathetic nerve blocks, and the 3rd block was a breakthru, 15 mins later you could see my blue foot actually get pink and instantly warmer.
So, where I stand( well no, actually sit in my wheelchair) I will have the nerve blocks once a weekfor now and started on Lyrica 300 mg day and have had good results with the nerve pain and burning. Unfortunately the deep i call it dark pain is still present, even with Tramadol 6x a day. So I am going to ask Dr about meds for the break thru pain. He wants to start PT again while I have the nerve blocks so that will probably start next week, My BIG concern now is that my left knee is now getting really stiff and if I flex to much painful, concerned that the CRPS is creeping up. So now for the past 18months I have been dependent on my wheelchair for any activities outside the house, and am very fortunate that I can get out of the house of course usually for Dr appointments.
Sorry for such a long explanation but this is my story.
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Unread 01-24-2013, 09:55 PM   #496
Natasha6086
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Teeth Try This!! New Treatment!

So happy that I am able to spread the word to fellow RSD/CRPS'ers.
My mother suffers from CRPS in her left leg. Cannot explain to you how badly this has changed her life and ours. Her pain is just to much to handle. Up until now the pain and depression had taken over her life. We were researching Ketamine treatments, we're desperate. It was that time that I prayed and received an email the next day!
Has anyone heard of Calmare Pain Therapy Treatment!?
Its new, developed in Italy.
There are currently only 20 of the machines in the US.
I was lucky enough to get my mother into the only doctor located on the West Coast.
She had consult yesterday
and her first treatment today!
She literally went from a 8-9 pain to walking out pain free!!
Wow is all I can say.
You can research it, but basically it scrambles the brain. It re-programs the brain that there is no pain there.
Its non invasive, no side effects and ITS NOT PAIN FULL!
Usually it consists of 10-12 treatments 45 min
these are done every day.
The pain is gone immediately and lasts for a few hours.
Gradually the pain comes back
However, each day the therapy is done it comes back less and less
until finally, its gone completely or at a 1-2.
Some people have gone 3 months pain free to 1 year!
If the pain comes back, you simply go back in for a booster treatment!
This is such a MAJOR breakthrough for people with the chronic pain condition and my mom is proof!! SO exciting I had to share the success. and did I mention its something like 91% effective!!

Quote:
Originally Posted by Wibley View Post
I have been reading posts on this site for the last 3 weeks when my insomnia and high pain kick in and have finally decided to post about how my diagnosis of CRPS came about.
I had 6 ankle/foot surgeries (same leg) in about a 12 year time span, The last surgery was a double arthrodesis. Did fine for about 5 years, then fell off the walkway to my house ( only 2" tall) and really twisted my ankle. Had the usual x-rays, MRI scans, in a boot for 6 wks, casted for 8 wks, still not healing.
I was then sent to a trauma surgeon who then told me I was in BIG trouble. Oh Yea ! When all was said and done, I went in to surgery#7 for 7+ hours, had 13 screws, 8 fractures, 5 bone fusions and now a triple arthrodesis.
Now I have no wt bearing for 16 wks, went in to get cast removed, bones not healing, 4 more weeks in cast. After that time he took the cast off and I started PT. Only allowed to WT bear in the pool. Well I spent 53 weeks in therapy, at the end I could wt bear/walk for 15 mins max with crutches. Next 3 visits to surgeon no change, x-rays a tiny bit better, the fusions did take well. So now I can walk 10 ft without crutches but need things to balance against, since I have no balance at all.
My surgeon sends me to an Anesthesia pain Dr. 4 weeks ago, after a physical and review of all tests, diagnosed with CRPS. I have had 3 lumbar sympathetic nerve blocks, and the 3rd block was a breakthru, 15 mins later you could see my blue foot actually get pink and instantly warmer.
So, where I stand( well no, actually sit in my wheelchair) I will have the nerve blocks once a weekfor now and started on Lyrica 300 mg day and have had good results with the nerve pain and burning. Unfortunately the deep i call it dark pain is still present, even with Tramadol 6x a day. So I am going to ask Dr about meds for the break thru pain. He wants to start PT again while I have the nerve blocks so that will probably start next week, My BIG concern now is that my left knee is now getting really stiff and if I flex to much painful, concerned that the CRPS is creeping up. So now for the past 18months I have been dependent on my wheelchair for any activities outside the house, and am very fortunate that I can get out of the house of course usually for Dr appointments.
Sorry for such a long explanation but this is my story.
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Unread 01-26-2013, 11:56 PM   #497
aascvt
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Default New Member Intro..

Hello,
This is my introduction to the board.. and CRPS is what brought me here, so this is where I’ll introduce myself. I’m 29 years old and I was diagnosed with CRPS about 3 months ago, although I’ve had symptoms for about 6 months. I’ve had a series of injuries that relate to this.. I’ll attempt a cliff notes version.

In Feb 2012, my great dane took a flying leap onto my bed from 6 feet away and landed on my left knee. (Feel free to laugh!) For all the swelling and bruising, some popping, many diagnostics later.. the diagnosis was a bad contusion with fat pad impingement – which is a common runner’s injury but can occur with trauma. Steroid injection, 6 weeks or so of PT and I was ALMOST walking normally again.

I went from “light duty” to normal function at work, and was almost instantly injured on the job. A large dog dragged me, resulting in an MCL injury on my right knee, and a re-sprain of my left. My employer (who thank goodness I no longer work for) gave me a very hard time about filing for W.C. and treated me differently from that day forward. Same things.. MRI, joint injection, more PT this time on BOTH “KNEES & HIPS”. Following the incident at work, I was using crutches like a walker. Both of my hip joints were popping constantly (still do). Finally, I did the things that helped strengthen my legs and get me back to as close to normal as I had been. I took a leap and after some really horrible things happening at work, I left that job to begin searching for greener pastures. I then began riding my horse again- the thing that makes my happier than anything in the world.

After a month or so, I was strong enough to attempt the focus of my discipline – jumping. A freak accident resulted in a very bad fall. When I landed, my 1400lb horse galloped over my left knee. My first thoughts were “This can’t be happening..”. My boot was cut off my leg, and I was carried into the car and off to the ER I went. Somehow, she did not fracture anything. I also learned that I had attempted to catch my fall with my left thumb.. bad idea. That was casted. I lived with an immobilizer on the leg and cast on the hand (same side) trying to use crutches for the first week (Does not work very well). The pain and swelling in my leg was intense.
If you’ve read this far.. you’re amazing.. so I’m going to fast forward. My surgeon was very slow and conservative about everything. I finally started PT formally after 3 months and my CRPS symptoms had started.. but he had not diagnosed it as such yet, because he was focused on the fact that my pain could be coming from my crushed saphenous nerve (runs along the inside of the knee). I asked for a referral to pain management and he asked me to wait and see what PT did for me. (What does that have to do with anything? PT is great.. but it is great in combination WITH pain management..) 4 months later I FINALLY had an MRI. Findings were: severe bone bruising of both tibia and femur, sub-q fluid in the tissue all over the inside of my knee, fluid under my patella, damage to my medial meniscus, and bone marrow edema . (Two of those consistent with the crushed saphenous nerve). By this time, my symptoms were becoming far worse and at an alarming rate. The symptoms were also spreading to my right leg, and within the next month started to move to the left thumb. I have burning pain, swelling, intermittent color changes, electrical sensation (like BAD pins and needles or being stung). On the left leg, the entire are that was crushed is very abnormal and hypersensitive. Blankets, tight clothing, shaving, lotion – hurts HURTS.

Worst of all and this ruins my nights is HEAT. I know that not all of us CRPS patients are alike and some of us have sensitivity to heat & cold. For me, it is heat.. and I am greatly helped my icing my knees.. JUST my knees. When I shower.. my legs turn into an interesting water painting.. flaming red at the knees, then splotches of red, purple streaks, and very purple toes. When I’m cooking.. standing at the oven brings on the causalgia and suddenly I’m on fire. I can’t put heat on in the car on my feet, no matter how frozen, because it will ruin me for hours – potentially the rest of the day. Starting in the afternoon, as the pain worsens, I ice whenever I have to. At night.. to get to sleep.. I literally have to ice both knees to the point of being numb.. then hope to get to sleep before they start burning again (5 minute window).

I am finally in treatment with a great Anesthesia trained Pain Management doctor who I’m liking very much.. her whole staff has been wonderful. My Therapy at the moment is formal PT once per week but twice more on my own, weekly Lumbar Sympathetic Blocks (bilateral - I just had #2), and medications. The results of my first LSB were extremely good, and second one not very good at all despite great pictures on the fluoro and temp readings (all proof of success in technical terms). I’m trying with all my might not to be discouraged.. but I don’t know how to stop myself. Tonight is a very bad night on the pain scale.

Meds are: Gabapentin.. still being titrated. Frustratingly my surgeon had me at a stupidly low dose that wasn’t touching my nerve pain. So I just got up to my therapeutic dose of 2400. Tramadol which I take as needed at night only. Zanaflex for muscle spasms in my back. Amitriptyline + Topamax for migraines. I have athsma as well.. and I found it interesting to hear from my doctor that both migraines and athsma are shown to be predisposing factors for CRPS.

I tried to make this “Cliff Notes” and it ended up as a novel. My apologies! If anyone else is going through or has gone through LSB’s.. would love to hear some more feedback. Also interested in others that have CRPS in knees. Happy to have found this board!

Cheers,
A
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Unread 01-27-2013, 08:33 PM   #498
Wibley
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Quote:
Originally Posted by aascvt View Post
Hello,
This is my introduction to the board.. and CRPS is what brought me here, so this is where I’ll introduce myself. I’m 29 years old and I was diagnosed with CRPS about 3 months ago, although I’ve had symptoms for about 6 months. I’ve had a series of injuries that relate to this.. I’ll attempt a cliff notes version.

In Feb 2012, my great dane took a flying leap onto my bed from 6 feet away and landed on my left knee. (Feel free to laugh!) For all the swelling and bruising, some popping, many diagnostics later.. the diagnosis was a bad contusion with fat pad impingement – which is a common runner’s injury but can occur with trauma. Steroid injection, 6 weeks or so of PT and I was ALMOST walking normally again.

I went from “light duty” to normal function at work, and was almost instantly injured on the job. A large dog dragged me, resulting in an MCL injury on my right knee, and a re-sprain of my left. My employer (who thank goodness I no longer work for) gave me a very hard time about filing for W.C. and treated me differently from that day forward. Same things.. MRI, joint injection, more PT this time on BOTH “KNEES & HIPS”. Following the incident at work, I was using crutches like a walker. Both of my hip joints were popping constantly (still do). Finally, I did the things that helped strengthen my legs and get me back to as close to normal as I had been. I took a leap and after some really horrible things happening at work, I left that job to begin searching for greener pastures. I then began riding my horse again- the thing that makes my happier than anything in the world.

After a month or so, I was strong enough to attempt the focus of my discipline – jumping. A freak accident resulted in a very bad fall. When I landed, my 1400lb horse galloped over my left knee. My first thoughts were “This can’t be happening..”. My boot was cut off my leg, and I was carried into the car and off to the ER I went. Somehow, she did not fracture anything. I also learned that I had attempted to catch my fall with my left thumb.. bad idea. That was casted. I lived with an immobilizer on the leg and cast on the hand (same side) trying to use crutches for the first week (Does not work very well). The pain and swelling in my leg was intense.
If you’ve read this far.. you’re amazing.. so I’m going to fast forward. My surgeon was very slow and conservative about everything. I finally started PT formally after 3 months and my CRPS symptoms had started.. but he had not diagnosed it as such yet, because he was focused on the fact that my pain could be coming from my crushed saphenous nerve (runs along the inside of the knee). I asked for a referral to pain management and he asked me to wait and see what PT did for me. (What does that have to do with anything? PT is great.. but it is great in combination WITH pain management..) 4 months later I FINALLY had an MRI. Findings were: severe bone bruising of both tibia and femur, sub-q fluid in the tissue all over the inside of my knee, fluid under my patella, damage to my medial meniscus, and bone marrow edema . (Two of those consistent with the crushed saphenous nerve). By this time, my symptoms were becoming far worse and at an alarming rate. The symptoms were also spreading to my right leg, and within the next month started to move to the left thumb. I have burning pain, swelling, intermittent color changes, electrical sensation (like BAD pins and needles or being stung). On the left leg, the entire are that was crushed is very abnormal and hypersensitive. Blankets, tight clothing, shaving, lotion – hurts HURTS.

Worst of all and this ruins my nights is HEAT. I know that not all of us CRPS patients are alike and some of us have sensitivity to heat & cold. For me, it is heat.. and I am greatly helped my icing my knees.. JUST my knees. When I shower.. my legs turn into an interesting water painting.. flaming red at the knees, then splotches of red, purple streaks, and very purple toes. When I’m cooking.. standing at the oven brings on the causalgia and suddenly I’m on fire. I can’t put heat on in the car on my feet, no matter how frozen, because it will ruin me for hours – potentially the rest of the day. Starting in the afternoon, as the pain worsens, I ice whenever I have to. At night.. to get to sleep.. I literally have to ice both knees to the point of being numb.. then hope to get to sleep before they start burning again (5 minute window).

I am finally in treatment with a great Anesthesia trained Pain Management doctor who I’m liking very much.. her whole staff has been wonderful. My Therapy at the moment is formal PT once per week but twice more on my own, weekly Lumbar Sympathetic Blocks (bilateral - I just had #2), and medications. The results of my first LSB were extremely good, and second one not very good at all despite great pictures on the fluoro and temp readings (all proof of success in technical terms). I’m trying with all my might not to be discouraged.. but I don’t know how to stop myself. Tonight is a very bad night on the pain scale.

Meds are: Gabapentin.. still being titrated. Frustratingly my surgeon had me at a stupidly low dose that wasn’t touching my nerve pain. So I just got up to my therapeutic dose of 2400. Tramadol which I take as needed at night only. Zanaflex for muscle spasms in my back. Amitriptyline + Topamax for migraines. I have athsma as well.. and I found it interesting to hear from my doctor that both migraines and athsma are shown to be predisposing factors for CRPS.

I tried to make this “Cliff Notes” and it ended up as a novel. My apologies! If anyone else is going through or has gone through LSB’s.. would love to hear some more feedback. Also interested in others that have CRPS in knees. Happy to have found this board!

Cheers,
A
Welcome to the boards, I also am fairly new. I did laugh when you described your Great Dane jumping on your bed. I have a Newfoundland puppy who just turned 1 yr old last week and right now is about 140 lbs and still has about 30-40 lbs to grow and he thinks it is totally acceptable to be a lap dog. However in his defense he has never seen me without using crutches or my wheelchair so he is very gentle when I am upright, but no rules seem to apply if I am sitting on the floor.

10 Days ago I had my 4th LSB. I have had great but short lived results, it is kind of like magic to see my blue foot turn pink and warm up within minutes of the treatment. My CRPS started in my foot and ankle and we have concerns that is is spreading up the leg, will have a better answer on Wednesday. I do therapy 2x week one day in the 100 degree heated pool.

I wish you luck and support with your treatments.
Bye, Kim
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Unread 01-28-2013, 12:53 AM   #499
aascvt
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Default Also laughing..

Quote:
Originally Posted by Wibley View Post
Welcome to the boards, I also am fairly new. I did laugh when you described your Great Dane jumping on your bed. I have a Newfoundland puppy who just turned 1 yr old last week and right now is about 140 lbs and still has about 30-40 lbs to grow and he thinks it is totally acceptable to be a lap dog. However in his defense he has never seen me without using crutches or my wheelchair so he is very gentle when I am upright, but no rules seem to apply if I am sitting on the floor.

10 Days ago I had my 4th LSB. I have had great but short lived results, it is kind of like magic to see my blue foot turn pink and warm up within minutes of the treatment. My CRPS started in my foot and ankle and we have concerns that is is spreading up the leg, will have a better answer on Wednesday. I do therapy 2x week one day in the 100 degree heated pool.

I wish you luck and support with your treatments.
Bye, Kim
Hi Kim,

I love newfies. : ) I'm sure your big lap dog makes you smile and laugh plenty, on days that you're hurting, as my dane does for me. These gentle giants are very perceptive about SOME things.. knowing their size-- not so much. I'm glad to hear that you have had good results with your LSB treatments. I went back and re-read your story.. absolutely terrible what you've been through! May I ask.. why the first 6 ankle surgeries? You must dread the thought of surgeons in general, at this point. Or at least I might.

A
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Unread 01-28-2013, 08:15 PM   #500
alt1268
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A,

Welcome to the forum, this is a great place to be for RSD'ers. There is a special group here. We learn from each other. Feel free to ask questions, post reply's or just read threads.

I am sorry for the continous injuries to your knee's and overall sadden by the fact that you have ended up with RSD. I would like to point out to you that "ICE" is a big NO NO for people with RSD, because it can cause spread and ultimately increase pain. I know you are heat intolerable for now, but try and do without it to limit further spread.

As far as LSB's I have had lots of them and it wasn't until my doctor started doing them weekly. The bad thing is there is a limit to how many you can get and eventually they just stop working.
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