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

Hi, Rosie, and Welcome. Sorry I've got no advice for you, I just wanted to reply to bid you welcome and so you would know someone has read your post.

I can only imagine the problems this causes you, but you seem to bearing up with humor and grace! You go, gal!!!
I do sympathize, my puny little foot cramps I occasionally get at least give me a teeny tiny hint of what you cope with every day. I sincerely hope your medicine starts to give you some relief!
Maybe someone else with more experience and insight than I will reply!
Hugs,

Hey lois

thanks for the welcome!!!! cramps are SOO annoying aren't they?! or just random muscle spasms are annoying as well!!!

Hope they are imporving. My meds aren't doing much yet but fingers crossed!

Rosie xxx

Rosie, I hope that, because you said your meds aren't doing much yet, it means they are at least doing SOMETHING! Any relief is better than none! Are the meds you're being given the type that need to build up slowly in your body before they have an effect?
Speaking of cramps, I took my diuretic last night because my BP was up a little, and, wouldn't you know, got cramps in my feet. It's not like I take it every day, and so have depleted my potassium. Since I only take it when my ankles swell, and not for high BP, this was the first time I had taken it in about a month. And I just had my blood work done about 2 months ago, and the potassium levels supposedly were OK. Sure wish I could figure out what is going on there.
Keep us posted on how your meds are working, Rosie!
Hugs,