Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).


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Old 10-28-2016, 09:18 AM #1
abigailsophiex abigailsophiex is offline
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Default Do muscle contractions from dystonia stop during sleep?

Hi everyone,

So I actually have CRPS in my left arm and right leg, but with that I developed pretty bad dystonia which means my hand/fingers and ankle/toes are permanently fixed in position. It also causes a lot of pain up my entire limb because the muscles are so tight and my foot is turned in at over a 45 degree angle.

As my fingers are completely fixed and my thumb is actually trapped under the fingers, my surgeon has decided he wants my hand in a splint, mainly for the hygiene of the skin in my palm to stop it breaking down. But he can't get my fingers straight so wants to do it under general anaesthetic. I was wondering, do the muscle contractions just stop under GA? I am confused as to why I would need GA to have it done, if he is going to just force it open regardless why can't it be done under regional anaesthetic? Sometimes when I wake up my fingers have changed position and don't feel as tight, so from this I assume that the contractions lessen and possibly even stop while I am asleep? I am obviously going to discuss this with my surgeon before we go ahead, but I was curious to know from other sufferers. I am sorry if I am being naive, I know very little about dystonia as it is just treated as an 'on the side' problem with my CRPS.
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Old 10-31-2016, 07:30 AM #2
TexasTom TexasTom is offline
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Complex regional pain syndrome (CRPS)

Have you been seen by a Movement Disorder Specialist? It take months (four is not uncommon) for initial appointment, but I would do that first!

My dystonia responded to Sinement (levodopa) and would sound way too familiar to you.

Dystonia will release when you sleep, for me it would often wake me up. So I suspect during REM I would relase but as I cam out of REM it would return (to me I was asleep, but woken by my twisted foot).
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abigailsophiex (11-02-2016)
Old 11-02-2016, 02:15 PM #3
abigailsophiex abigailsophiex is offline
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Quote:
Originally Posted by TexasTom View Post
Complex regional pain syndrome (CRPS)

Have you been seen by a Movement Disorder Specialist? It take months (four is not uncommon) for initial appointment, but I would do that first!

My dystonia responded to Sinement (levodopa) and would sound way too familiar to you.

Dystonia will release when you sleep, for me it would often wake me up. So I suspect during REM I would relase but as I cam out of REM it would return (to me I was asleep, but woken by my twisted foot).
Thanks for the reply

I don't know if we have movement specialists here in the UK, I have been seen by both rheumatology and neurology, but this was before the dystonia really started to become a problem so they mainly focused on the CRPS. I will definitely ask about it though because if there are some medications which I can try that might help that will be a lot better than having the splint done under general anaesthetic!
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