Hi CZZ74,
I'm sorry you are having this disturbing symptom. I've had RSD 14 years, now full body. It was about 9 years ago that I went full body and had the violent jolts, jerks, spasms. They would come at night in bed, and resting watching TV. They were like electricity and would go thru my brain from a deep sleep and would life my head off the pillow. I went on the anti-seizure drug neurotin to stop them. Had to go up to 3200 mg. but that stopped them. I later changed to the newer drug lyrica, and that one seemed to help more with the burn pain. I hated both of them. They cause weight gain, so be careful if you go on it. RSD can go internally-perhaps your abdomen? Others have internal RSD. I do. Last October I asked my Dr. if I could go off lyrica, and I was off by January and have only had a couple jerks since then. I hope it continues. I lost 30 lbs and have another 30 lbs to loose to be where I've always been. My Dr. is a neurologist, pharmacologist, and psychiatrist. He is just finishing up a pharmaceutical study for seroqouel. I wasn't getting good sleep for months. I couldn't fall asleep till 5-6 a.m. Was on Ambien CR. He put me on seroquel 300 mg. and I sleep 9 sound restorative hrs of sleep, not waking up till morning. He'll be writing the report soon. It's amazing. I take mine at 7 pm and on an empty stomach. I don't eat an hour before or an hour after taking it. The sleep caused my pain level to drastically drop. I cut my vicodin in half and also taking half the anti-anxiety med.
I'm so sorry you have full body and stage iv. Is your jerking when you are resting or sleeping. My spells weren't active while I was moving around. I am actually surprised my shocks didn't come back. I think part of it is, I'm more relaxed, I have a lot of different coping skills. Mentally, emotionally, I'm calmer. I know the anti-anxiety med Lorazepam was a huge help. I'm on Cymbalta 120 mg-went off wellbutrin xl and paxil cr both double dosed. i take two high blood pressure meds. Cut back when I lost 30 lbs. Dr.s thinks when I loose my last 30 I'll be able to cut back more. Vicodin is my pain med.
I'm mobile, thanks to this Dr. and swimming. My toes were curling up, not touching the floor, when he had me in the pool doing exercises dailey. They now touch the floor. I have one crippled hand, misdiagnosed. I wasn't diagnosed for 4 years.
My guess, is that your Dr. will want to put you on anti-seizure med. I hated the brain electric shocks. They scared me.
How did you get RSD? When did you get diagnosed? Hope the best for you. My Dr. just built two clinics here in Scottsdale, Paradise Valley and they both have HBOT. This economy has affected our business. I'm so grateful I'm doing better, with sleeping so well. I can go out and get new accounts. I should be able to do the HBOT this winter. It's expensive. Insurance doesn't cover it for RSD. Maybe someday they will.
Take care and let us know how you are doing? loretta