Benign fasciculation syndrome

[oldgringo]

I've been having twitches in my calfs 24/7 on both legs for over 2 months. About 1 month before they began I has a Shingrex shot for shingles prevention. That shot was the only thing out of the ordinary for me before the twitching began. So far I've had no other symptoms other than sometimes my legs feel heavy when I'm walking.

[Desha34]

I’ve noticed many people in this threadsaying their vitamin d was low. Mine was also low,been supplementing for a month now and not feeling better. Can anyone update if they’ve had success supplementing and how long it took?

[JMV12]

Hello all!

It seems as though this thread has pretty much gone dormant, but I wanted to share my recent experiences with what I hope is just a case of severe anxiety-induced BFS . . .

About 6 weeks ago, I started feeling a tingling/numbing in my left hand. Then, within a few days it spread to my whole arm, then my left leg, then the right one, and finally, to my right arm, although with much less intensity. I also started to feel cramps and aches, primarily in my lower back, left shoulder, and legs but also occasionally in my arms and hands. As I have to walk around a lot because of my job, I did notice that the pain/cramps got more intense as the day went on, to the point that I was really sore by the end of the day.

I then went and asked Dr. Google what I might have, and of course, I found the Big One that we all are terrified of having. The more I read about it, the more convinced I became that I had it and that I was done for . . .

I went to the doctor's to rule out any other diseases. I've suffered from food poisoning a few times before, and the symptoms are actually very similar, so I had blood work to see if that was the cause again. All blood work was negative for pretty much anything. He said I was in good health but referred me to a cardiologist just in case, though. My brother has a heart condition, so the cardio did an EKG and found that my heart was perfectly fine. Both Drs. prescribed pain pills and anti-inflammatory meds to reduce the pain and stuff. It didn't really work at all. As days went on, it became very difficult to sleep because I would suddenly wake up and notice that either arm or leg was numb and very difficult to move at first, and then I was able to move it just fine, with only a little pain/discomfort.

I went to a different Dr. who prescribed antibiotic shots in case the blood work had been a false negative for food poisoning (it has happened before), given my medical history with it. The shots hurt a lot, but I did notice a slight reduction in my pain for a few days. Still, the symptoms would show up randomly and grow, peak, and then subside, like some sort of evil roller coaster.

The next stop was the neurologist. I described my symptoms to him, and he seemed quite alarmed. He did a basic reflex test, asked me to follow his pen with my eyes, asked me to extend my arms, legs, and hands, etc. After saying that it all seemed normal, he recommended I got a brain and cervical MRI. I got the results, and he said everything was fine in the brain, but he did notice a slight compression on my top cervicals, mentioning that while it would account for some of the pain, it really wasn't enough of a problem to manifest itself like it was. He told me he had suspected MS, but ruled that out after seeing the MRI. No mention of the Big One from him at all, btw, so I didn't bring it up myself. He suggested it was all anxiety/stress and suggested that I visit a psychologist. (Full disclaimer: I still haven't because I was a psych major in college . . .)

As all of this was going on, I kept reading about the Big One and its symptoms. I didn't really experience fascs at first, but as I read more and more, I started noticing them, little by little. I've had eyelid twitches before, and I always found them annoying, but they usually went away on their own after a few days/weeks. Not now. Every now and then, my left arm also goes a bit crazy. Or my left thigh. Or my right arm. The point is, they started popping up pretty much everywhere, even my butt and chest . . . It's nothing too intense and only happens occasionally, but I still get uncomfortable at having them especially when they wake me up at night because then I can't sleep after that.

However, the fascs still made me uneasy, and I still felt like something else might be lurking underneath . . . I became terrified of the late stage symptoms. primarily the inability to breathe. I then started to notice that I felt like I wasn't breathing properly and started to yawn constantly but not really pull in any air, if that makes sense. I would panic and had to create a routine of breathing/relaxation exercises to help the episodes subside, which would normally take anything from a few minutes to even an hour. I also found that chewing gum, speaking, singing (I'm somewhat of a musician), or keeping my mind occupied in general makes that seemingly go away, until I remember it, then it starts all over. I also had perceived weakness in my arms and legs. I started to test my strength during the day at random, from doing calf raises, to push-ups, and everything seems fine. I can walk around just fine unless I happen to have a cramp (no stumbling/falling down, though), but thankfully, no signs of clinical weakness up until now, which is why I haven't gone in to get an EMG done. I tell myself that I won't unless I see something more severe happen to avoid giving myself more even more anxiety . . .

Luckily, I found this forum and a very helpful post about the Big One (by someone I think goes by fishman?) He provided a testimonial from someone who has it and it went a long way toward calming me. Apparently, pain and tingling aren't really early or primary symptoms related to it, so once I internalized that, I was able to achieve some calm for a while. Also, posts like this one where people share their experiences in a positive environment has helped a lot too. I actually decided to join the forum because of the original poster, Michelle, as her symptoms were pretty close to mine.

My tingling and numbness are still there, but in a much lesser degree compared to how it started. It's mainly only in my hands and feet. The cramps and pain are also still there, but like I said, they usually only get really nasty if I have to walk around too much . . . the fascs and the breathing thing are also still there and have become my primary focus for now. All in all, I'm pretty sure it's just BFS, but the fear and anxiety of having something more severe is with me constantly . . .

One last thing that I definitely feel is worth mentioning: I recently went through a major negative emotional experience in my life, and, while it really hurt, I didn't really grieve outwardly in the sense that I didn't cry, or felt down about it too much. Maybe my body found a way to deal with it in its own way . . .

I wrote a book, so thank you if you read all of this. I would like to hear what you guys might think, or share/talk about any details that you think might relate to your own experiences.

[AJG]

I have also become obsessed with either having ms or als. My story is a bit different. I was on 10 mg of brintellix for 6 weeks for anxiety. I ended up developing rhandomyalysis which is muscle breakdown as my cretine kinese levels were elevated and I was hospitalized for 3 days with iv fluid flushing as a treatment. I had to get off brintellix and it was cold turkey. Only went down to 5mg for 4 days. Withdrawls were so bad: vertigo, acid reflux, dizziness, crying spells which I still have at times. My Cretine Kinese levels are back to normal. I also had multitude of tests done which show no muscle issues. So during week 2 after stopping the medication the muscle twitches started all over my body promarily in my legs which were affected by the rhabdomyalysis, along with cramps, tingling, jerking of limbs. I even had a facial twich on my left side after I had a break down where I started to cry and could feel my nerves just building up inside. The twitches are in a relaxed position and stop when im moving. I'm a little weak in general but i'm able to walk, i'm not falling down, i'm not dropping stuff. My doctor is sending me for a nerve study and for an MRI to satisfy me but that won't happen until late fall. My doctor does not believe I have any of those diseases and that it is linked to my anxiety. However, my anxiety is through the roof. It was my first time on antidepressants and my body did not respond well to it at all. I did not have any of those physical issues prior.I must say the twitches are becoming better so i'm a bit hopeful. I also find myself sounding like im going insane as I keep asking people if my muscles are shrinking. I read that rhabdomyalysis can be caused by ssris but it also can be linked to some scary issues.

[BackRoads]

So, has anybody found any real solutions to BFS yet? Please share!

[adeline14]

So, has anybody found any real solutions to BFS yet? Please share!

I've been twitching for 7 years. It's taken over my life. I've been worried about it constantly. I've seen dozens of doctors and had all sorts of tests. They've found nothing. It sucks, but at least I'm still alive.

[BackRoads]

I've been twitching for 7 years. It's taken over my life. I've been worried about it constantly. I've seen dozens of doctors and had all sorts of tests. They've found nothing. It sucks, but at least I'm still alive.

Dang. Have you found anything at all that helps?

[BackRoads]

Anybody? Anybody found any remedies for this at all?

[Flapj]

I know it's probably not helpful to suggest this, but relaxation techniques seem to help me. I have what I can only describe as BFS. No doctor has officially diagnosed me but they all say it's nothing and/or they're not concerned about it. I've had a negative brain MRI, clean EEG, and normal labs so it doesn't make much sense to keep on poking around for answers to something that has been, for the most part, only a nuisance.

I am comforted by the fact that in the 6 months or so I have been dealing with this, there has been no "progression" at all.

I get spasms (small twitches) in my fingers that seem to originate in muscles in my hands. There are tons of videos of this on YouTube so apparently this affects many people. See for example: https://www.youtube.com/watch?v=6WvClfl5VQo

They usually happen when I am stressed, in the afternoons, or if I do strenuous exercise. I also get little zaps from time to time but those are much less common. My MRI shows bulging discs in my neck and spinal stenosis. One neuro said that could be the cause and prescribed physical therapy. I thought it helped but it could just be because it relaxed me. The physical therapy included massage.

My balance, coordination, and strength have not been affected at all. Other than the anxiety this can sometimes produce (i.e., "why am I twitching?" "is it ALS?" "is is MS?"), there have been no other ill effects. I hope it stays this way or improves.

[BackRoads]

I know it's probably not helpful to suggest this, but relaxation techniques seem to help me. I have what I can only describe as BFS. No doctor has officially diagnosed me but they all say it's nothing and/or they're not concerned about it. I've had a negative brain MRI, clean EEG, and normal labs so it doesn't make much sense to keep on poking around for answers to something that has been, for the most part, only a nuisance.

I am comforted by the fact that in the 6 months or so I have been dealing with this, there has been no "progression" at all.

I get spasms (small twitches) in my fingers that seem to originate in muscles in my hands. There are tons of videos of this on YouTube so apparently this affects many people. See for example: https://www.youtube.com/watch?v=6WvClfl5VQo

They usually happen when I am stressed, in the afternoons, or if I do strenuous exercise. I also get little zaps from time to time but those are much less common. My MRI shows bulging discs in my neck and spinal stenosis. One neuro said that could be the cause and prescribed physical therapy. I thought it helped but it could just be because it relaxed me. The physical therapy included massage.

My balance, coordination, and strength have not been affected at all. Other than the anxiety this can sometimes produce (i.e., "why am I twitching?" "is it ALS?" "is is MS?"), there have been no other ill effects. I hope it stays this way or improves.

Sounds like you are handling it better than most. Sure wish there were some other good remedies for this. Anyone else have success stopping or greatly improving this?