Hi Jules, and welcome - congratulations too on your pregnancy.
As Screaming Eagle said - I know the frustrations of dystonia though mine affects mainly my feet and ankles, where it's now caused joint contractures, and periodically affects my right hand, shoulder and only occasionally my neck.
Are you having any therapy to help? Are there meds you can take that won't cross the placenta? Does physiotherapy help you?
My life-saver has been a baclofen pump. I still have severe pain because of my other issues - but the baclofen via the pump helps to relieve the worst of the spasms and pain associated with the dystonia. Oral relaxants wouldn't work and botox was a disaster for me.
Anyway, welcome again
Moderator - Chronic Pain Forum
Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.
Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump