Hello lady, Well I saw my Rheumy yesterday, i took him 2 pages full of notes of new symptoms that have been happening to me and taking over my life the past few months. I used to be as u described....my jerking was only when i was at rest as i was drifting off...then the jolts got stronger n stronger and became whole groups of muscles....jerking my whole body from my neck 2 my feet completely off the bed...about 30 secs between jolts! needless to say becoming extremely bothersome! But in the past couple of wks, it is no longer as i am goin to sleep, it is any time i lye down at all..at any time of day with in 30-45 sec it starts...neck jerks backward n side to side! and now has started even sittin up. I took a video on my phone to show my rheumy yesterday that my son took right after i laid down...he was shocked that i was awake. He said that this was all Extreme progression of my fibro...well 99%, but that he wanted my to see a neurologist just to make sure i might not have a movement disorder also, but when that came back neg...he will say it is 100% Extreme Fibro....I was so Happy just to have an answer..an Explanation! God Bless ya baby. I am takin topamax and valium....but my pain spec put me on that and not sure how that is gonna work out? keep in touch
No I haven't seen a neurologist yet for my body jerks but will be at the of February. I've been experiencing this for about two yrs. At first I thought it was restless leg syndrome but now I'm starting to question that. I'm on a whole bunch of meds for a number of different reasons but the one I'm on for my fibro is also used for seizure disorders. The name of it is gabapentin. I've been on this for about a year now. The biggest problem I have is that my body seems to get used to a medication way too quickly for my liking, then I either have to upped or change to another med. I also have one of the worst immune systems that I've seen yet. My sister is the same, she has almost the identical health issues as I have. I was starting to wonder if anyone else with fibro, was experiencing any body jerking at night. Does this just happened when we're trying to relax and get some form of sleep? That's what it seems to be like for me. I know that I get cortisone shots for my shoulders and elbows but I'm not sure if the cortisone does anything to relieve the body jerking. I believe that stress can do a lot to the human body! I wish you good luck and please keep us posted!