Lately, my BFS has risen to a new level. My muscles are constantly popping and fluttering. They will move from my back, to my thighs, to my forearms, to my tongue in a matter of seconds! I get the popcorn type "pops" all over my back, the back of my thighs tend to flutter, my calves that that worm-like feeling and my tongue will zap several times in a row. The tongue zaps occur in the middle, underneath, at the tip... everywhere on my tongue. Those are the ones that really seem to bother me. At what point does BFS plateau? I mean, can it get any worse than this? I was even getting twitching in my neck and jaw last night. Crazy. I'm at 6.5 months right now.At this point, I feel comfortable with my BFS diagnosis with my clean EMG and neuro exams. I just like to hear from people who have experienced twitching to the extent that I have them right now. Especially those with back and tongue twitching as they seem to be less common. As you all can understand, even after a neuro tells us this is benign, it is still very distressing when our bodies do these crazy things and it doesn't appear to be letting up any. -Matt
Unending Muscular Pops & Flutters
- Thread starter BobJazzy
- Start date
DesertKnight
Well-known member
Matt,I don't get the tongue twitching like you do, although occasionally I will have them along with some on my face in various spots (usually my upper lip and chin). I do get the back "popping" all the time at night. It pops in various spots for several minutes at a time. As far as the crazy all over twitches...that was me (but to a lesser extent) up until about 6 weeks ago. My twitches have always hopped around my body...from the top of my foot, then to my shoulder, then my thigh, then my back...you know what I mean. There has never been much rhyme or reason to my twitches. I do get hotspots occasionally, like the outside top of my foot for about 3 weeks straight. Mostly they are the random all over type like you describe. Mine aren't nearly as intense as yours, but I don't think the severity is any more cause for concern than a lesser case of BFS. This is some weird stuff Matt. I've honestly given up trying to figure it out. My neuro was very honest with me and said he had no rock solid answer as to why I developed it or if it would ever stop. I've been fortunate in that mine has decreased in severity quickly. I can imagine being in your shoes would get frustrating!I understand why you ask questions like this. Some people will assume it means you're still worried its sinister...but I know that's not the case. It is comforting to know there's at least one other person out there with a shared experience. I'm going to pray for you Matt, that your BFS will become much milder and manageable. Please hang in there and remember that while mine isn't as "busy" as yours is, its identical in presentation. ~Frances
Matt,Have you tried any of the medication that has seemed to help some of the folks on here (like neurontin, or tegretol)? Not sure if that's an option for you or not. Sounds like your twitching is starting to really bother you (like Frances said not because of the anxiety it induces in most of us) and maybe something like that would slow down the twitches, so you don't have to deal with them to the same extent any longer.Xanax helps my twitching subside quite a bit, but I only take it once a week at this point. It even helps into the next day believe it or not. It's very addictive, so I'm not sure you'd want to go down that path. I think I remember you saying you take a muscle relaxant which helps?Anyway, I'm so sorry that you have to deal with this. I am hoping that your symptoms are like mine, where they wax and wane and you'll move into a phase where they taper down. Mine have been waxing all weekend and driving me nuts (especially my stupid foot).Hang in there!Mitra
Thanks for the replies guys, I appreciate it.The only meds I've taken is Clonazepam which helps but I only take it once in a blue moon. I'm pretty much against medication. I just worry because my twitching is definitely getting worse every month. One month is was in my calves and that freaked me out.... the next month I started popping in my shoulders and back, and that freaked me out... then it hit my tongue, and that freaked me out.... now, it's continuous twitching with just about every muscle involved. I can honestly say that I feel twitching, pulling, popping, or vibrating somewhere in my body all day long. Its very distressing. I'm considering asking my PCP to put me on a low does SSRI but I don't know if I'll actually go through with it. We'll see.
Matt,I'm not sure the SSRI would help with the twitching, but would help with anxiety. I have struggled with SSRIs in the past, due to their side effects (most notably horrible insomnia and teeth clenching for me), so I'm resisting them right now. But, they seem to help so many people on here with anxiety (they definitely helped with my anxiety in the past). I think most people would agree though, that you feel worse before you feel better, but then after a few weeks you feel like the clouds have lifted and you feel great.The other meds I mentioned are anti-seizure meds, but I'm with you - I'm not eager on taking medication either. But, a lot of these meds (like neurontin) also have anti-anxiety effects as well, and from what I've read on here, may make your twitching subside. Might be worth discussing with your neuro.I'm hoping your twitching will subside a little. It sounds like yours has gotten increasingly worse, but I think most people on here have seen their twitching eventually taper down a bit after a while (like a year or two). I know it's a long time to wait but hopefully it will get better over time... Maybe it's just peaking now? Hang in there, Matt.Mitra
Matt,I am coming up on three years this month. In the early months I went on Lexapro which really helped a lot. I tried Cymbalta first with bad side effects (body jolts etc). Lexapro was easy to get off of for me as well. BTW I dont like medication as well but the anxiety was Really getting the best of me. Medication bought me some time for my psychy to catch up.Steve
hey matt, i feel like i could have written your post...each month my twitches are getting worse and more of them in more places....maybe it has to get worse before it starts to get better....i can only hope for both of us that this garbage does settle down eventually...like u i have avoided medications in the hope that i can conquer all this med free....only time will tell if i can continue on without medication....and like u matt i suffer from the tongue twitches and they have gotten worse too along with a new twitch or flutter across my back....chin up my friend surely it has to get better soon for both of us....big hugs your friend shannon 
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