Benign fasciculation syndrome (BFS)

I’m a little late to this thread, but I wanted to share my experience out of empathy. This year has been an absolute medical curveball.

I turned 41 in October, and, humbly, less than a year ago, I was in elite shape. At 40, I ran a marathon in 2 hours and 40 minutes. But everything started to change after an inguinal hernia surgery in the spring. I began experiencing random twitching in various parts of my body—frequent enough to be distracting. By July, things had escalated. The twitching became more intense, and I started feeling seriously "off."

One morning, despite not feeling great (twitching, cold lower legs, nerve pain), I decided to swim in the pool, hoping exercise would help. That evening, everything fell apart. I could barely walk, and I was hit with a wave of neurological symptoms so severe I was bedbound for nearly three weeks. It was terrifying.

Since then, I’ve slowly recovered, but I still struggle daily. My main symptoms include:

Constant fasciculations: Especially in my calves, but they occur all over my body.
Nerve irritation and muscle discomfort: Mostly in my lower legs, hands, quads, and jaw.
Fatigue: My jaw weakness is particularly bothersome—it often signals that the other symptoms are about to flare up worse.
I’ve had extensive testing: EMG nerve and muscle studies, MRIs of my spine and brain. Shockingly, everything came back clean. I was convinced I had ALS or MS, but my neurologist reassured me there’s no sign of a neurological disease. He called my condition benign, though the symptoms are anything but. He plans to repeat the EMG in January to confirm.

As for treatment, I’ve tried several options:

Xanax: Helps calm my nerves, particularly in the afternoons.
Baclofen and Gabapentin: Provide some relief and help me sleep, but I still deal with uncomfortable symptoms daily.
Supplements and functional wellness: I’m working with a functional wellness doctor and taking various supplements, which has been part of my approach.
Therapy: I’m working with a therapist to address medical anxiety, which has been helpful.
I’ve started exercising again, but I’m nowhere near where I used to be. While I haven’t lost strength, my endurance is way down. If I push myself too hard, my symptoms flare up—it’s just not worth it.

Looking back, I suspect I pushed my body to its limit. Between marathon training, raising young boys, and traveling for work, I likely compromised my immune system. My neurologist believes something viral, like Epstein-Barr or mono, triggered this, affecting my nervous system. While he reassures me it’s benign, I still fear the possibility of a neurological disease.

On the bright side, this experience has taught me to slow down and focus on what truly matters. It’s even strengthened my 15-year marriage. For a while, when things were at their worst in August, my wife and I thought I was facing my mortality, which brought us closer together.

I’m considering a visit to the Mayo Clinic to see if they can provide additional insight. Selfishly, all I want is to feel normal again. This journey has been brutal, but I’m learning to manage it.

For anyone else going through something similar, I’m with you. It’s so frustrating to explain these kinds of symptoms—especially when you look fine on the outside but feel like a battle is raging inside.

Much love to everyone here, and I hope you all find relief.

Wow mine 3 years im 42. Atleast we have some comfort we are not alone.

I've had the same fasculations for 3 years. They have really never completely stopped but have lessened. I had an MRI of the brain and and EMG of my legs because thats mainly where they are but I get them everywhere. Both tests normal. So to me there's nothing really to test. A brain MRI would of showed something abnormal if it was serious. And an EMG checks for serious illness like ALS. Somedays it makes me stress and get worried I just have to give it to GOD. I do exercise 4 days a week. Eat healthy and try to relax and reduce stress and anxiety but it's hard. I can accept it if its benign it just worries me if it something else. I just didn't follow up with neuro anymore when those tests were negative. Believe it or not my family doc said her working partner had the same thing and freaked out thinking it was ALS and had same I did, tests and both were negative. Its nice to know there are more of us out there that have the same issue. Im 42 now . May God Bless all of you and may he pour his love and mercy upon you to better days ahead. Have hope in the Lord.

I too back in 2008 saw a Neuro in CLE for twitching and was told BFS. At the time they were rough and sleeping was horrible. I kind of learned to live with it. No EMG at the time. Over the last 13 years I somehow was able to deal with it. I thought MS and all the usual ones. Over that time I had several brain MRI’s all negative. Fast forward to the end of last year I had a case of shingles and started noticing a numbness and tingling in left foot shortly thereafter. Then it also started in the right foot. Then after a mild bought of covid I started really noticing the BFS. I felt some weakness and driving with my right foot felt numb like. Sitting watching tv my calves were rocking. I saw neuro again in CLE and had EMG in leg along with blood tests which were fine. Also a CT scan of spine which showed mild stenosis and mild bulging of some of the discs from top to bottom. They ruled out anything sinister but my worry is still off the charts. Sleep disturbances and rough nights trying to sleep and eye issues and the swallowing/talking thing is noticeable to me. Hands feel funny at times too. They had me start taking Alpha lipoeic acid 600mg daily. I have been able to walk 3 miles without any issues and I do not see any atrophy but I get how we all keep thinking there is something that was missed. I keep telling myself that if I had something 13 years ago it would have already shown by now. I did read however that recent viral infections, (I had two) can bring on BFS. I also read that long covid has many of these symptoms that run on the GBS spectrum. So I relate to all of you wondering if this will ever go away. I too am a constant worrier with a “doomsday” personality. Stress always seems to hit the top of the BFS list but maybe I am just so used to stress I don’t know it is even affecting me anymore. Retired law enforcement.

I am a 64 year old male... still very active and overall in very good shape. I have (suffered) with (what appears t be) benign muscle fasciculations for over 10 years now. Lately getting much worse. The facilitations have increased all over my body now... continuous all day. It leads to cramping and worst of all my legs appear to randomly give out on me causing me to fall down. This happens at least once a week now. About two weeks ago I had severe facilitations in my upper right arm causing terrible pain and cramping. My arm has not recovered. The pain seems to be the most severe at night while laying down and during sleep. I have not gone to a doctor as my fear is (either) being diagnosed with something worse or just going through endless tests as others have with limited or no relief. Has anyone else experienced any of these symptoms? Years of this is both mentally and brutally difficult to handle. Thank you and I look forward to any responses or support.