Hi Linmarie,

I also get really bad spasms in my RSD limbs. I have 2 types of spasms, I have the Dystonia which causes my limbs to lock into lots of strange and painful positions and causes my toes to twitch up and down and then I have the severe Myoclonic Spasms which causes my RSD leg to bounce around wildly in the air without me being able to control it!!

I have tried all sorts of muscle relaxants such as Baclofen, Kenadrin, Propranolol, Diazepam etc etc and nothing has helped me so far. I have attended an intense Physical Therapy Program and that helped calm the spasms down more than any medications although the spasms are no where near gone completely.

My PT's gave me lots of exercises to do and I had to wear 2lb weights on my ankles and then move my legs up and down etc. The ankle weights were worn to try and stabilise my joints .... it was VERY painful BUT I do feel that it did help me a little with the spasms. If you would like me to send you the exercises, please let me know as I still have them and continue to do them on a daily basis!!

Here is a couple of videos of the Myoclonic Spasms in my RSD leg and you should be able to see the Dystonia also (my foot is rotated out to the side and has stayed like that for nearly 2 years now despite various therapies!)

http://www.youtube.com/watch?v=qE_OwuilOew
http://www.youtube.com/watch?v=xIXakErNBpE

I really wish I could help you and take the spasms away but I know I can't unfortunately. Just know that I am here for you and if you have any questions, please feel free to ask as I know how scary and painful the spasms can be!!

Thinking about you and hope you find something to help you soon!