Nighttime Twitching Anxiety: Help!

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GHayes420

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Hello fellow twitchers. Back with more anxiety and a question about nighttime twitching...Just a quick background, started bodysurf fasciculations last month. Freaked out after searching net about ALS. went to neuro who said they were benign and no ALS. did EMG which was completely normal. Bloodwork also completely normal. I would say my fear of ALS is about 90% gone.However I do have one symptom that is still kinda freaking me out and I wanted to see if other BFS sufferers can relate or to see if this is something I should investigate (meaning 'freak out') about further.At night when sleeping and go into a dream state, I awaken from REM sleep with some part of may body in a 'rapid fire' twitch state. It is usually by back muscles, my chest muscles, or my triceps. They are basically fluttering very very fast, almost vibrating. Sometimes I can try and forget about them and go back to sleep, other times I worry about them too much and the anxiety about them keeps me awake. This fluttering stops rather quickly when I wake up, breathe, flex/stretch, etc. The only time of day this happens is at night when I am in REM/dream state sleep. Obviously this makes a good night of sleep difficult but I do manage 6-8 hours of interrupted sleep regardless.I have noticed that my daytime twitching seems to have decreased slightly. I have also noticed that exercise increases the twitching as does stress in general. As a side note me general doctor is perplexed by this stuff and ordered an MRI of my brain. trying not to think about that right now. So my questions are:1.) Is this a normal symptoms of BFS?2.) Do you or anyone else you know have this phenomenon?3.) Do you think this could be something else besides BFS?4.) Please feel free to type out, "it is not ALS." Just for my sanity.Thanks to everyone in this great community!!!!
 
Greg,We have the exact same symptoms buddy. That's exactly how I would describe mine. It's in my back and flares up as soon as I lay down to go to sleep. If I'm sitting up or walking around, nothing. But as soon as I lay down, bam. It starts rapid fire fluttering, quivering in my back just under my right shoulder blade. I woke up 20 times to it last night. I've had it happen a few times on the other side but mostly my right.Like you, they stuck the EMG needle right in the middle of my back and it was clean. This has caused my anxiety to go up only because it is a new type of twitch and has hung around now for 4 days. But I don't know why I'm freaking out. This is BFS. Our clean EMG's are all we need to know.Oh, and about the MRI, I had one too. Since we're BFS twins, I will spoil the ending and tell you straight out what the result will be.... clean. Your ALS fears that have returned is perfectly normal with BFS. Happens to EVERYBODY! I can relate to everything you've written from the first time you posted on this board, so whatever you have, so do I... and it's called BFS.-Matt
 
My shoulders and ribcage just LOVE to do that at night!! Especially the side I'm just lying on, so I turn around and the other will start firing..isn't BFS LOVELY... :mad:
 
Hey Greg, good to hear from you again...sorry your anxiety is playing up....we all go thru that, the ups and downs...I have the same twitch as Matt and Chrissi just under my shoulder blade it's like a machine gun sometimes and it's like a really fast flutter other times...I also get this in my feet too...and absolutely yes stress will make you twitch more as will exercise, but it is good to keep exercising...So to answer your questions.....1. Most definitely BFS2. Yes I have it and so do heaps of others.3. NO, NO, NO...it's bfs4. IT IS NOT ALS.....There now u just have to accept that you have a really bloody irritating syndrome called BFS...so do I, Matt and Chrissi and all the other wonderful unique people on this board...Are you doing something about your health anxiety? Because the key to all of this I have finally figured after 4 long months is get the anxiety under control and the rest will fall into place....and believe me I'm still working on that too....best wishes Greg...you are fine.....shannon
 
I just had this happen to me last night, and it really, really freaked me out. I woke up from a dream state and my calves were popping away like Fourth of July fireworks finales. It was crazy. And, awful. Normally they twitch much more slowly, like one every 10-15 seconds when I'm sitting, but this was insane.What can this mean? Is this a typical BFS symptom? It just seems really out of whack.Mitra
 
Hey mitra, good to hear from u again....lots of us get this, I get the machine gun twitch as it sometimes called in my feet, my calves and in my back..it's very common....were u on your feet a lot yesterday? If I'm on my feet and have a long day my feet will pop all night...actually I don't even have to be on them for that long.... :) ...it's all part of bfs things change from day to day....your fine....best wishes shannon
 
Hi Shannon!!Yes, I was traveling that day, so lots of walking in airports, feet that hurt, squeezed into a seat on a plane, etc. It was just crazy that night, it was like my twitching was like machine gun fire, just like you said. I didn't notice anything as dramatic last night, when I was more rested.I think I'm just honestly still so worried about this. I am better, with the EMG that only showed fasciculations (although none of my doctors have called me to discuss, and I think I'm better off without them doing so), but I'm still worried that it could turn into you know what in the future. I'm really new to this with only 2 months of twitching. I think I'll feel a little more secure when I have a year under my belt or so, but I don't want to wish time away either.Mitra
 
It's funny - I have the same fears that others have been straight out called out by people on this board (like MarioMasher, I think it is) where I question the results and timing of the EMG. It really makes me think so many people on this board are so alike in the way they think, and it's almost a categorizable anxiety disorder at this point. I think I need time to adjust to the idea of BFS (although I was never officially diagnosed -- however, the dr. did say my twitches were benign) and every day that I'm still healthy, I feel a tad better about everything. And, it's very hard to get used to this, especially when I had the machine gun firing off of my calves. I had never seen it before, and it was pretty scary to see your own body out of control like that. My normal daily twitches are about 1 every 10 seconds or so, and sometimes can be background noise, but I was stunned at this. I think it's because my legs were exhausted. What happened to the days I would go skiing all day long and the worst thing that would happen would be a little tiredness afterwards? I just hope someday I can be back there again, and all these worries and fears behind me.
 
Doctor telling you that you have benign twitches = BFS diagnosis. My doctor said the same thing to me. And yes, we are all very alike in this disorder. I seem to be harsh and direct with my statements but I was exactly where you were a while ago. I understood what BFS was and I understood what ALS was but I still had some lingering fear, no matter how irrational it was. Twitches are a weird thing at first and it takes time. You will get there.
 
Hi mitra, Yep we are all very similar on this board, the ones of us who had EMG's pretty much most of us then doubt the results..I know I did..we think we had them done too early, did they stick the right muscle, how come the twitching got worse after the EMG, how come I have different twitches....I've been there too...on a bad day I still question..it's all part of our anxiety disorder....and it does take time to get used to this new us...I still struggle somedays, even saw the dr the other day and said...do i need another EMG...he said NO.....So don't stress too much Mitra it takes time...remember were all going thru this..all of us know what it's like to worry about every twitch...but hopefully like Johnny said after a while we won't care about them...best wishes shannon
 
I'm SO glad I have this board, and people like you guys who are so supportive of something that truly has been difficult for me. Other people (family, friends) don't quite get it, because they aren't twitching and experiencing this - plus, they don't have the same level of anxiety as I do, generally. Or, they just think "you're fine" because the doctor said so (like I SHOULD be thinking). But, it's not that easy. I think that that first google I did on my muscle twitching really put such horrible fear into me, it's now hard to get the anxiety to alleviate (since it was escalated to ridiculous proportions). My outlook on everything has changed a bit, and I really want to be back to the way life was, pre-twitching. But, don't get me wrong, I'm so very grateful to have had a good initial neuro exam and a clean EMG and it really did reduce my anxiety. It's just that I'm always reminded of all of this, every time I twitch, which is pretty much every time I sit or lie down.I kind of robbed GHayes' post. Yikes! Didn't mean to! I just could really relate to the "rapid fire twitching".
 
Hey mitra...I'm pretty sure Greg wouldn't mind that u robbed his post... :LOL: ...and you are absolutely right people don't get it when it comes to twitching..I have friends who say to me, so what you twitch, you had a clean EMG there's nothing wrong....ok well my sensible brain knows this..but my little anxiety monster is always there trying to provoke me into getting anxious...And u know some days I don't even feel like I'm that anxious and I twitch like a loon...I think it was Mario who said it takes many many months to calm your nervous system down after being really really anxious..makes sense...best wishes Shannon..
 
I have rapidly firing twitches in my calves when I first wake up, followed by an instant sensation my feet are sweating. Anyone else have this? I am new to twitching so my worrying is at an all time high!!!
 
As you can see, I had this two years ago, and still have this when I wake up. The difference is that two years ago, it was really only my calves and feet. Nowadays, I twitch all over when I wake up.Unfortunately, this is very common for most of us. I find it an ironically unpleasant way to wake up in the morning! But, it's part of BFS and our crazy nerves. It's like they're waking up first and want to give us a big resounding "good morning!!!".Mitra
 

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