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 08-16-2008, 02:27 PM #8
Gymjunkie Gymjunkie is offline
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Join Date: Aug 2008
Posts: 64
15 yr Member
Gymjunkie Gymjunkie is offline
Junior Member
 
Join Date: Aug 2008
Posts: 64
15 yr Member
Default Hi and another thank you

Hi guys
Mark - I had my wheelchair made to measure and deliberately picked one that has some adjustability in case my condition deteriorates going forward and I am unable to balance myself as well as I can just now. I am using a smaller, specialist company in the UK so the completely made to measure chair is actually going to cost less than going to one of the big manufacturers. I am small but have long legs so I'd have struggled with a standard frame size. I guess it depends on your budget but even some of the big manufacturers have so many frame options that you should be able to get a good fit.

Lynn
I have no doubt at all that there is CNS involvement with the problems I have. With CRPS, it is possible for the CNS to become involved in addition to the various peripheral nervous systems and motor disorder is an extremely common feature of CRPS - just not in such an extreme way as I seem to have. I have already had an MRI which was normal hence the next load of neuro tests that I am waiting to go in to hospital for. I think for most people with CRPS its fine to focus on the disease from a pain perspective but it does involve much more than just pain so for me that focus isn't such a help.

Topsie
I am 37 so only just older than you! I will check out these interesting conditions you have. CRPS is the "new" name for reflex sympathetic dystrophy which is the neurological condition this board is all about. I have a definite diagnosis of CRPS but there is nothing to stop me having two things going on at once!. CRPS causes a wide range of symptoms - everyone gets different combinations and severity of these. For some people it seems to fade away or go into remission and for others it progresses unremittingly in spite of treatment. It involves peripheral and central nervous systems so I guess anything in possible in terms of brain and motor neurone involvement.

Thanks for the continued input guys - I'm off to look up Topsie's stuff to see what the symptoms look like for those joyous sounding diseases!!
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