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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

'Do you still have CRPS'? - My son doesn't have RSD any more - we're just careful because there are still some residual weaknesses. He was young and apparently it's easier to recover, but he had it from c 8/9 years old to c. 11 and has been clear for 2/3 years now. It [I]is [/I] possible that he was misdiagnosed since the hospital treatment was incredibly unproffesional and muddled, but he did have shooting electric extreme pains well beyond the effect of the original accident.

'Did what? '

I'm beginning to forget the details, so look back at my past posts, but this is a summary which was essentially 'Learning to build up moving as much as possible on your own again?''

Initially, he couldn't bring back leg to within about two feet of front leg and had to walk with it dragging behind. The physiotherapy seemed to make it much worse and was torture - so each day, we warmed it for 10 minutes with warm towels, then massaged it gently across the area for 10 minutes with warm oil with lemon Balm in it, then he would start his exercises, which, since he couldn't initially bend his knee, was to imagine moving it 30x, and we also did the same with his ankle (wiggle) and toes (wrapping round finger). He started being able to contract the knee muscles, and then later move them about a mm and we built up every day from there until he could bring his feet together and eventually start walking normally (he now plays proper sport again). We massaged and exercised every day once and if time, did extra exercises every day.

Like you, we didn't go into the pain area, but did maintain fitness and all areas of movement that did work and keep an eye open for anything that was beginning to degenerate.
Every day, he would walk the amount he was able to walk back from school, even draggong his leg behind him, as long as it didn't hurt. For him it hurt as soon as he reached a very small incline, so i'd go and get the car and pick him up. We also got a puppy. This gave him the incentive to keep trying and also helped sooth the pain when he stroked him. Interestingly, the day he managed to bring both legs together, the puppy kept sniffing his knee, so [I]something[/I] had happened.

Like you, I took him swimming, more to relax than exercise, but it was soothing.
Also to soothe the pain, he read and when he started to improve, hypnosis started to take the edge off so he could get to sleep.
We did used pain killers but they didn't touch the pain, although I tried to use anti inflammatories rather than pain killers to reduce the chances of long term damage.

At some point, the RSD disappeared and the injury pains were just that- injuries which could be dealt with in the normal way - once or twice the RSD returned briefly - for example, once horse riding, but that was a long time ago and didn't last very long.

He doesn't ride on a regular basis any more although he's fine for holiday riding, hasn't taken up cycling again and actively avoids it, does swim, walk, run, walk up mountains and play knock about tennis and competitive Rugby and football.
We still see an osteopath every six months or so to check muscles etc are redeveloping in a balanced way and we have a lot of banadages and support socks on hand ready for injuries

So for us, this worked, and may work for you since you already seem to be having positive results following this method - good luck.

Just remembered - he took it upon himself to do quite a lot of work on the exercise cycle at some point too!

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