Hey Lisa

I also have the clawing. I have botox for it and take a lot of muscle relaxers (I am on baclofen, diazipam and triphenydriyl). I also have splints which I wear at night to try and stretch the spasms out every day....

I must admit, for me, botox is brilliant. Well.. ok it' hasn't got my hands working properly - but I have alot of other disease issues which would stop that anyway.. I have generalised dystonia along with the full body RSD and the botox does calm the spasms down - I used to have such severe spasms in my thumbs that they would dislocate the joints and now... well.. they are abit better! yay....

I can identify so much with what you are saying, and I know how dreadful it is, and how dreadful the pain is with it. It feels like your joints are going to die if they twist even the tiniest bit more and like you are just going to... I don't know what...

Sending you loads of pain free hugs and I really hope that the pain drs start taking you seriously. The other thing I thought of was hot wax - this was something the physios used to do to try and calm down the spasms - they place your hands into warm wax and then peel it off. Stretching is something that is really important with RSD/ dystonic spasms otherwise the joints set like that.. (that's happened to my feet and ankles) and it's NOT good.. I know that stretching is agony - but even once a day is better than nothing!

Loads of Love

Frogga
xxxxxx

PS tayla - I get whole body jerks and spasms too. They SUCK!