Okay, maybe I shouldn't complain. My twitches and parethesis (sun burn, icy hot feelings) have subsided greatly for now. I'm even sleeping a little better. My EMG was clean. My Neuro says its all BFS. Why then am I letting the myoclonus jerks get the best of me? Even those aren't as violent as they were a couple months ago. But to lay in bed and try to drift off to sleep, only to feel my wrist, thumb, forearm or ankles jerk just makes me fear the worst. To see a muscle twitch is one thing, but to have an entire limb flop involuntarily (while still awake) just freaks me out.I've read a number of posts here were people say this is all part of BFS, but fasciculations seem to be a muscle thing, wereas myoclonus seems more like a neuro thing. Maybe I just need some reassurance.
Wrestling with Myoclonus: BFS?
- Thread starter antman
- Start date
JohnnyRocket
Well-known member
Many here have dealt with and continue to deal with myoclonic jerks, me included. It isn't necessarily specific to BFS because many "normal people" also experience this symptom. I believe it has more to do with anxiety. Either way, no need to worry.
JohnnyRocket
Well-known member
I seem to remember them most often during early sleep stage, but I've had plenty during the day as well.
Thanks AZ. That makes sense.For me, it's also the fact that the myoclonus jerks started 10 months after my twitching had been going on. So I tend to worry that my BFS Is progressing into something worse. My neuro said that having BFS does not raise the probability of being dx'd with other diseases, but I have a hard time accepting that as my symptoms change over time.Thanks again for your reply!
Johnny,I hear you. My nature has always been to assume a worst-case scenario, pre-BFS included. I realize this is not a healthy approach to coping with our condition. Like I said at the top of this post, I have a lot of positive indicators to go on. And you're right, I need to accept that BFS may be an evolving condition and just get on with the quality of life that I do have. Thanks for reading my post and offering your perspective.
princessshelia
Active member
I know this is an old post, but I had the same concerns about my jerks. I used to get them only when I first fell asleep, and I would jolt awake. But now I get them even when I'm resting, getting ready to fall asleep. I agree they are freaky. I have days when I wonder if things are going to start moving involuntarily when I'm out in public. Could be pretty embarrassing -- and troublesome -- if I develop an arm I can't control!
EnlgishBirder
Well-known member
I get these just as I'm about to fall asleep. They are normal. My husband gets them and so do my kids. I have occasionally had them in the day - usually if sitting for a while and mainly my shoulder / arm. I would not worry about these as I think they are benign.
Shell,If it's any help, my jerks were/ are much like you described. At first, I noticed them as I began to drift off into sleep. Then, I began to get them after I woke up in the morning and laid in bed, either trying to fall back asleep or just resting with my eyes shut. I never got them when I was fully awake and alert.I just went about a month where they were gone completely and I kind of forgot about them. However, over the past few nights, I sensed them, but to a much lesser degree than before. Weird, I know ... But so is so much of this condition. My bet is that yours will subside or diminish over time.Hang in there.
I also get them.. Now they bother me more then twitching that slowed down a lot ....i get them mostly while awake(relaxing on couch ) all over ,ankle wrist shoulder. I had few in my shoulders that popped my shoulder so bad it hurt .Two months of jerking more or less depends on the day 
Good luck Jo 
)
Good luck Jo )