Benign fasciculation syndrome (BFS)

Hi Everyone,

I was recently diagnosed with BFS back in June 2022, after months of dealing with twitching, numbness, cramping and tingling. There are periods of time where the twitching gets so bad, I can not sleep. When I cannot sleep, the twitching gets even worse. I believe part of it is anxiety driven. Last year, I had a couple of life changes in a short amount of time, and noticed the twitching soon after. I thought, since I stopped working out at that time, that it was in response to inactivity. So I got massages, and it seemed that the twitching and spasms stopped. I started working out again and everything seemed fine. Then February of this year, it came back, but more ferocious than ever. I don't recall being too stressed out, but it was even worse than the occurrence after the life changes from last year. Of course, in order to make an appointment with any doctor took months. Months for PCP, and even longer for neurologists. And I don't have insurance. So all this, coupled with the financial responsibilities sent me into a tailspin, mentally. There were several sleepless nights, back to back to back. No sleep, and the twitching was relentless. From the temples of my head, all the way down to my feet. In fact, when I got the EMG back in June, the machine was already reading twitches my muscles were making without any electricity going through my body. With all the doctor visits, I was finally diagnosed with BFS. Doctors told me that anxiety, caffeine and exercise were triggers. And I always pushed back with, but I've been drinking coffee and exercising for over 20 years! Maybe the anxiety, in its' severity is new, but I think I have a handle on it.

Reading these posts help now, because I do not feel alone. So I appreciate every single one of you, telling your story, and sharing the things that may work. In fact, I am going to order the magnesium as soon as I finish writing this. But I wanted to give some things I've noticed that has worked for me....

1. Sleep - First off, this one is so important for me. I recently went through a period where my sleep was disrupted constantly, or I had a hard time getting to sleep. My sleepless nights lead to the temples of my head twitching, which leads to my anxiety increasing, which leads to not being able to fall asleep, which leads to my head twitching, my leads to my anxiety.... You get the idea... It's a vicious cycle. I have coping strategies and tv shows/videos that help me sleep.

2. Exercise - This actually helps me. I work out 5 days a week. This helps me get to sleep because I'm usually exhausted from the workout. I typically work out an hour, 5 days a week. A little cardio, but about 45 minutes of weight training.

3. Foam Rolling/Massage Gun - I use the foam rolling and/or massage gun when I cannot afford to see a masseuse. Otherwise, deep tissue massage is fantastic, and very relaxing for me.

4. Valerian Root - This helps me get to sleep. It's for stress/anxiety. I take it at night. Especially in the beginning, it did the trick. Melatonin and melatonin-esque pills sometime gives me nightmares, and that messes up my sleep.

5. Therapy - I speak to a therapist once a week. I am also a therapist. This helps me unload a lot of the stress I receive from my patients. It also helps put things in perspective. Even if I leave a session without having a concrete plan of action, the time I took to verbalize my issues makes it well worth it.

6. Activities - The best thing is to keep your mind occupied with other things, especially things that require movement. Each moment that my mind is not focused on the twitching is a win for me. So, I like to meet up with friends, go to a bar, go dancing, shoot pool, axe throwing. I was my car. Anything to keep my body moving and/or my mind not focused on my body.

I hope we all pass this. I don't want to deal with this for years and years. I am coming upon my first year with this, as the onset of my symptoms was late last September. I look forward to reading you guys progress, and hopefully your remission from this disease.

Best,
S

I also have peripheral neuropathy in my right foot, diagnosed from the EMG test.

I bought a magnesium/calcium/potassium supplement. I think I will up my intake from 1 to 2 tablets a day. I feel the same as you, that maybe I did something stupid in life. I am actually trying to get an appointment with an endocrinologist to test my hormone levels.

It took me years, MRIs, CT scans, nerve tests, and half a dozen doctors to finally find one who put a name to what I have been suffering with. Benign fasciculitis. I was so relieved to finally have a name for what has been plaguing me. At last I could get more information, but sadly there doesn’t seem to be a cure and the few remedies that I had found that work for me provided only partial relief.
My symptoms consist of a pulsing that starts mostly in my left leg after I’ve been in bed for an hour or more. The pulsing travels down the left side of my left leg from knee to ankle. As the night progresses the pulsing becomes more intense and then my foot starts to twitch from the ankle. If I didn’t jump out of bed at that point, I developed a very painful cramp on the left side of my left leg, just to the side of the shin bone. This cramp did not dissipate quickly and I have had to pace my apartment, sometimes for as long as 15-20 minutes until the pain subsided enough for me to go back to bed. If I was lucky, I was able to sleep for a few more hours without incident.
The remedies I mentioned consist of the following: I eat a banana and drink about 6oz. Coconut water during the day. 400 mg. Magnesium citrate about an hour before bed, 300 mg. Gabapentin when I get into bed. Most nights this provided enough relief so I could make it through the night with only occasional setbacks. Finally, I have recently discovered that a VERY firm mattress relieves a lot of my symptoms and I am finally getting a good night’s sleep most nights. I’m hopeful that this will continue to provide the relief I’m now enjoying.

Welcome @bevkei, Thank you for sharing what has helped with your Benign fasciculitis. It really helps when others share their experience and what has helped them. How did you find Connect? Were you searching to find answers to a question?

I just decided to look for more information and many times in the past year I had thought of applying to Mayo Clinic or Cleveland Clinic where I had read they had a research clinic for neuro-muscular disorders. I just happened on the Mayo Clinic site in my search yesterday. Needless to say it was rewarding as only in that I’m not alone in my suffering. What I didn’t mention in my post was the amount of sleep deprivation that was getting in the way of my life in a big way. As I posted, the discovery that a mattress could solve a lot of the problem was a blessing.

I've had muscle twitching all over my entire body, 24/7, it never ever stops. Going into 3 years of this insanity I finally have learned to somehow live with this but it's not easy. What is very upsetting to me is that the numerous neurologist and endocrinologist and internal medicine doctors I've seen over the last 3 years with dozens upon dozens upon dozens of tests coming back all negative etc I find it very disheartening that all these doctors just chalk this up to benign fasciculation syndrome and send us on our way with either Xanax or tell us to go on a antidepressant. I'm so tired of this. I do not understand why all these neurologists from around the world are not coming together and trying to figure out what on God's green earth is causing benign the circulation syndrome because there's nothing benign about it, it's never ending and tormenting people like me that try to ignore constant muscle twitching all over! These doctors just send us on our way and I don't see any research going on or neurologist talking to other neurologist trying to find out what is the cause of this. How can all these doctors all these specialists just chalk this up to benign fasciculation syndrome and not get to the root cause of what the heck is causing this. I'm so tired of it and I'm tired of the nonchalant attitude from too many doctors. We need real doctors to put their heads together and scientist as well and find out what has caused every muscle in our body to short-circuit and vibrate and twitch etc non-stop.

I'm just very discouraged and disgusted with the medical community that they just think nothing of giving us this diagnosis of benign fasciculation syndrome because that's an easy way out for them to just tell us oh it's benign and go on your way and just deal with your entire body feeling like it's short circuiting all the time. Until I see neurologist and other doctors getting together along with scientists and trying to find out at least trying to find out what the cause is I'm through with them. Yes they've sent me on my way Yes they told me to live with it but you know what that's not good enough for me. There's got to be some root cause or several root causes for what causes a human body to have every single muscle from head to toe twitch constantly.

Honestly, you express my feelings exactly about the medical profession and their total disregard for our suffering. I’m thinking there aren’t enough people making enough loud noise and there isn’t enough money pouring into the coffers of the research community to make it worth their while.

I wonder how many people out there actually suffer from BFS and have no idea what they have. I suffered for many years seeing every sort of doctor imaginable and all but the last doctor (who I saw 2 months ago) told me they had never seen a patient with my symptoms and despite having me take every possible test they still had no name for my condition. What that tells me is that doctors these days want to fit everyone into a box so they can get you in and out within 10-15 minutes. God forbid your symptoms stymie them. Instead of trying to help you by doing a little research they just tell you there’s nothing wrong that they can see and they send you away without answers or hope. Or as in many cases, you are prescribed a drug to “calm” you. Thankfully I was never prescribed Xanax or anything like it. I will say that Gabapentin did help along with the other remedies I figured out on my own. See my original post for that formula, although I doubt it will be the solution for everyone.

I have spoke to hundreds upon hundreds of people over the last 3 years who live around the world but the majority of them here in the United States I've spoke to on different social media platforms who all suffer the same symptoms as us with this constant continual muscle twitching like our body is short circuiting all over the place and these doctors shrug it off as being "benign ".
I've gotten to the point I would like to slap so many of these doctors who shrug off these symptoms as no big deal and just go home and deal with it or take all these antidepressant or other type of drugs to turn you into a zombie and give you a multitude of other horrible side effects to go along with it that then you have to deal with those horrible side effects from all these big pharma pharmaceutical drugs.

As I told many people and they can be pissed as they want to as to what I got to say but all I'm telling you is the medical system in America and especially the mental health system in America has collapsed. Especially the mental health is non-existent it's horrible no wonder we have a suicide rate the way we do. We do not really have a mental health system in this country. But as far as the medical system it's a joke. If I had my eyes closed and did not know I was in America I would think I was in a third world country at this point. Absolutely disgraceful that's so many many doctors have shrugged all of us off and told us we have benign fasciculation syndrome and that's because they don't want to waste any more than 10 or 15 minutes of there allotted time after we've waited six months to see a specialist and we get 10 minutes with them and all these tests come back negative and they just do not want to put the effort in. Every single one of these neurologists around America should be having some kind of a conference about this benign fasciculation syndrome and get to the bottom of it so that some of us can live out the rest of our lives with some darn relief or get to the bottom of what's triggered it. Is it a environmental chemical exposure? Is it from drinking contaminated potable water coming out of our faucets? Is it because we were exposed to a specific virus that we might have had a different points in our life? What is wrong with these doctors that they think that we can all just go home and twitch away twitch twitch twitch 24/7 like our body is just short circuiting and they think that we can live that way and then when our mental health declines in the s****** because of this there's no help at all really for mental health in this country. It has collapsed beyond third world status. And all the mental health people want to do is again push you off on big pharmaceutical drugs. Having the big pharmaceutical companies made enough money in this sham?

I'm new to this discussion, but like everyone here, I've been diagnosed with benign fasciculation syndrome. I don't have time to narrative my long medical journey, but suffice to say it's been the same sort of ordeal that many of you have experienced. For me, I'm most interested in what worked best for people by way of treatment. Second, it seems like there is mounting evidence to suggest that BFS is caused by one or multiple of the Human Herpes Viruses (e.g., HHV6 and HHV7).

I wonder whether we all could get better treatment if medicine new how to better treat these viruses. I would be interested to hear you thoughts. Thanks for hearing me out.