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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Old 03-21-2012, 01:02 AM #11
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Quote:
Originally Posted by Neko1221 View Post
I've been stuck w/o internet for a few days, but I just got it back and when I logged on this was the first thread that caught my eye (I know I have a few questions to answer on other threads, but I just happened to stop here first)

Okay, so I'm going to answer this question on a strictly 'it works for me, but it might not others' basis.

A little history: I was diagnosed with RSD in my left foot approx. 2 months ago now. I am on large doses of neurotin and amitriptyline, I've also had some success with the sympathetic nerve block. My first block wore off approx 3 days after injection, but Im having another done next Monday (darn the insurance for causing a delay!)

Anyway - back to the PT - I've been doing the very standard desensitization therapy, small stretches, picking up marble with my toes (HATE THIS) and of course stim. Nothing was really seeming to work for me. Last week my PT wanted to try something new, but I almost passed out or punched him when he suggested it. He wanted to try contrast water therapy. Basically I'd put my RSD foot into warm water for one minute then follow by putting my foot into *slightly cool water for thirtly seconds, and back and forth for 15 minutes. Well, I could hardly stand any water on my foot for any amount of time, ecspecially not cool water! So I was very opposed to it!! After many tears on my part, I finally gave in and tried it... Let me tell you, the pain was just as bad as I thought it would be! Im not sure where I even found the strength to endure it! But I did, and I'm so happy with the results! Within 10 minutes of finishing this therapy I was able to move three of my toes that have been pretty much locked into place since RSD set in, I was able to pick up ALL of the stupid marble, I was able to step up the desens.therapy from a level 2 to a 6, the color of my foot was the closes to normal its been since the RSD began, and I was able to do five minutes on a bike. I know that this is something that will certainly not work for everyone, and Im not recommending that anyone tries it, but it did/does work for me! The relief I got from my first session lasted 4 hours!!! I now do it every morning and every night! I also want to note that the warm water was around 100 degrees and the *cold water was only part way to the cold end of tap water. I thought that getting my foot into the cool water was going to kill me, and it hurt a lot, but was not horrible. The horrible part was going back into the warm water after being in the cold - it was so intense it knocked the wind out of me! (which might be a good thing because Im sure they wouldnt have appreciated the words I would have screamed!) I should also add that it hurts just as bad each time I do it, but the relief is so worth it!

Again, I'm not saying this will work for you, but it does work for me! I had such a good Sunday and Monday that I was able to put a shoe on for about an hour and take about ten steps!

Good luck and warm wishes!

~T
That is great news!!! I hope that they caught yours in time....they fooled around too much with me and let me go too long without treatment and saying I didn't have RSD! Then, I had a flare from Hell and immediately took myself to the Neurologist...it took him by surprise and he started me on meds, but any injections in my back are out of the question as I was born with Cerebral Palsy and such injections could cause me to be paralyzed...keep doing the PT...I've been doing PT my entire life and sadly nothing has really helped my RSD.
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Old 03-22-2012, 08:00 AM #12
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I have not found any exercises I can do except take walks. I can't do the therabands, treadmill, bike, weights, you name it. I joined Curves at one time to try and lose some weight and my Dr. came in and walked around looking at the machines and said no to any of them. He was right, I couldn't do them.

I do take walks every day the weather permits. I even bought an exercise ball and I can't use it. I thought I could but my back got worse trying to use it.

In PT I can handle the massage therapy and the stretching they did to help loosen me up but boy nothing else.

I find it so frustrating to want to be able to do things and can't. You know your body and you know what works for you and what doesn't.

If you have a PTist that won't listen to you when you say you can't do something then that's the time to quit. I just quit my last one because she wanted me to do weights and I sure can't do them.

It's very hard to know what works for people with RSD. Everyone seems to have a different thing that helps and not one thing works for all.

Ada
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