Benign fasciculation syndrome (BFS)

Hi, I'm a 23 year old college student and I found this group because like many here, I started having twitching out of nowhere and it spread to my whole body (hands, legs, tongue and back). The truth is something strange, because this started just a month after I was given covid, and a month and a half after I stopped taking amitriptyline (since I suffer from migraines), I had a CAT scan and it came out fine, I also had an EMG and everything came out in order, my strength and reflexes are normal. I don't think it's because of the caffeine, because since I was a child I have always had coffee, so I guess my body is used to it. It is a very frustrating situation because there are days when one tries to forget and want to look for the causes, but there are days when there is always the ghost of ALS at your back, and the fact of being young does not help much sometimes, as I have read that when ALS occurs in young people, this is usually a very slow progression and can take years to manifest itself, I would appreciate if someone can help me, greetings.

Hi,
I was diagnosed with BFS over 3 years ago. I had EMG and nerve conduction studies ( done at Mayo in 2017) I did try several medications Tegretol and Lyrica but did not like the side-effects. I have been seen yearly by neurologist at University of Michigan who reassures me that symptoms are still not concerning for progressive neurological disease and I have felt reassured by this and just focused on living my life and ignoring the twitches and cramps. I had frequent twitches that would last for seconds to minutes, sometimes in one muscle for several days ( but always coming and going.) Recently I have had one twitch in my left forearm that has been constant for over 10 days, never stopping, it is affecting my ability to type and is very annoying. I am feeling very worried about this and that it might be a sign of a non-benign process. Has anyone experienced a constant one muscle fasciculation that lasted over a week? My anxiety is getting the better of me so any suggestions for how to deal with that would be appreciated. I do have a neurology follow up appointment in October. Thank you.

Hi there, same here. How are you doing now?

So my new pcp checked my ferritin levels and they were low. Started Iron supplements. And they actually are xalming them down it seems. So maybe that was it all along. I mean I've only been on them like 2 weeks so I'm hoping this was the reason all along.

Hi! Curious to learn if the iron supplement is beneficial? And to calm my nerves a bit, youve experienced twitching in one spot for an extended time as well, how long approx?

Its been about 4 weeks I've been in them and they have slow down. My fasculations have mainly been in my calves but I get them all over too

Man the way you describe this is very similar to me. I started about a year ago. My kids were sick about a week or so before this then passed the sickness to the other one, I however never got sick. Went for a run, came home and was fatigued beyond what I have ever felt. Muscles twitching randomly anywhere, high muscle tension randomly, stinging pain in random areas of my body, burning sensations in at times my dorsal forearms, face. Random vibration felling's in various muscles groups that would come and go. Thought I was dying. Went to the ER. Was covid negative and all tests normal. I had definitely gone through trauma recently as well about two years before (my mom passed from ALS). My hands felt weak and more jittery than before which then would get better and then somewhere else in my body will get that feeling. All I could think was I had a genetic link and had ALS. Im the youngest in a big family and none of my siblings had anything, even my mom never twitched at all during her progression. Saw neuro, did their scans, nothing showed up. Had very low Vit D and testosterone. started supplementing. Did an EMG. Due to my fatigue he did a test for Myasthenia gravis. Passed all tests thankfully. He thought It was a viral cause and to give it time. I spent many horrible anxiety filled nights after this researching, reading forums, super focused on my symptoms, hallmarks of health anxiety that I have. My highest Anxiety had the worst symptoms, but my symptoms were causing my anxiety. Horrible loop I slowly got better without even realizing I did. Months passed and the twitching went down significantly but never left. Happened very gradually. About 70-80%. Burning was gone, severity of twitching when it did happen was significantly less, no more vibrations, no more stinging pain. Never back to 100%, but started to be able to do more at the gym. Happened so gradually I thought "Maybe this was always in my head"? I am a chronic worrier afterall and always in my head. fast forward 10 months after. Im outside doing gardening, go to the gym, and BAM, a few days later im exactly in the same spot I was at my worst, with ALL the symptoms in the exact way they were. Crazy. I did have horrible brain fog. for a few days couldn't concentrate on anything, my anxiety filled my head again and I went back down the rabbit hole. Spent countless hours searching the web again for answers Until it hit me. Wouldn't you know it, both my kids were sick again during my second bout, I was not. Currently am slowly improving the second time like before. Its weird how similar the symptoms are between bouts. I remember lifting a weight at the gym and feeling horrible wrist pain, searched up carpal tunnel as a result but that got better without me realizing. When it happened again I felt that EXACT pain lifting a weight again for the first time today. Unsure if this is post viral Fatigue, BFS, Fibromyalgia, or anything else, but man its been tough. Would like an update on where your at now? you doing good? I know its years later, but this post hits too close to home me not to comment on it. Have a great day!

How r u today?

Doing good, they seem to be getting less. But for some reason over the weekend. I had a few moments where they were firing again. Hopefully more use of the iron will help.

I've been having fasciculations for about two years now. Mostly in the calves and thigh, although occasionally in other places such as thorax, bicep, hand, or face. I didn't worry about them until I found out that they could be a symptom of ALS. I went through all of the testing (lab work, 4 limb EMG) to rule out all of the causes and finally got the good news in February that it was not ALS.

I haven't found anything to reduce them but the knowledge that they are the result of BFS and are innocuous was reassuring. While still annoying (watching my legs move like there are aliens under my skin trying to escape and feeling the larger fasciculations with occasional cramping) I try to ignore them. I find that the more you obsess over them the worse they get.

I have read that anti-seizure meds can help but I would rather deal with them than add to my medication regimen.

Good luck!