Hi, I'm new here.

I'm Rosie and I'm 20. I developed secondary generalised dystonia due to Reflex Sympathetic Dystrophy (or it could be some of the meds I have taken to try and control the pain caused by the RSD).

Anyway it means that my arms, legs, neck and occasionally jaw are held in really tight dystonic spasms. I have botox every 3 months in my neck, shoulder and thumb and it definetly helps.. I'm slowing increaseing the dose of benzhexol - currently on 20mg a day. Also take up to 110mg baclofen a day and prn diazipam (up to 30mg/ day). (as well as ketamine/ DF118s/ domperidone etc for the RSD).

So any ideas for ways of managing this? as it is really annoying! I am a uni student and am slightly fed up with looking silly everytime my dystonia sets off (it's weird - does anyone else have it where their joints are locked in place but yet manage to shake/ jerk at the same time - its worse with exarberation of the RSD/ too much light/ noise/ injury/ stress/ tiredness/ eating certain foods especially sugar or caffeeine).

also I have especially severe contractures in my feet - if the dystonia is calmed down will these ever calm down? (my feet are both inverted at about a 50 degree angle and the feet are twisting upside down with my toes bent over my feet... and my right let wraps around my left leg (it's pretty impressive) will this dissapear when the meds start working properly? I am not a candidate for DBS because with the RSD I can't have surgery.

Anyway... any thoughts would be appriciated!!

thanks!!

Rosie xxxx