Benign fasciculation syndrome (BFS)
Not sure if this is the right place to ask this, but I'm really not sure how to interpret what's going on. I'm 40, have had random twitches now and then around my body for a few years and ignored them. Mentioned it to my Doctor last year during my annual routine health check and she said it's likely just stress and ignore it. Got sick a month ago, high fever, headache, dizziness, chills, and near constant twitching in different spots all over my body. My knees were going crazy and my biceps were twitching, I felt like my body was malfunctioning. I was also itching all over and my extremities were aching, especially in my feet and hands, but when I pressed or touched my feet or hands, there was no pain spot.
Two weeks after I got referred to a Neurologist who checked my strength, did not do any EMG or MRI, no other tests, just testing if I could physically push back or feel anything below my knees and past my elbows. He laughed and said I have benign muscular fasciculation syndrome and gave me some Xanax. I went for a second opinion and got the same diagnosis, benign muscular fasciculation, and was asked to return after a few months to check on me. The twitching is not as constant as before, but it's still happening, arms, lower and upper legs, knees, neck, shoulder, chest, they last a few seconds and stop. I can't sleep, the itching and the twitching wakes me up at night. The twitching does not go away when I move the muscle, it keeps twitching. Has anyone else ever had anything like this? If so, how or did it resolve?
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Wow mine 3 years im 42. Atleast we have some comfort we are not alone.
Still suffering here with the all-over-the-body twitches, minor numbness, and minor "asleep" feelings in various and random areas of the body.
Has anyone gone to these Nueropathy centers you see ads about? I guess there is ECS treatment that is primarily for nueropathy?
Also, I read that Red-light therapy could help with nerve issues, and I already use it for other things. Has anyone had success with this?
I'm trying to put together a list of things to try that might be helpful, and to do them separately to see if it's that ONE thing that could help. I have already tried the Magnesium, B12, and D... but not really helping. Haven't tried Calcium yet. What else?
Before randomly trying things, you could do bloodwork which would identify if calcium, magnesium, B12, D, Lyme antibodies, etc. are out of normal ranges. That's what my neurologist did to rule out most possible fasciculation causes. That's how he narrowed it down to BFs or ALS.
I can relate. I did have the body wide fasciculations, now hardly ever, but still have the minor numbness asleep feeling in hands and feet. In hands only occasionally during the night only. I’m seeing neurologist and several causes are being considered. He said B12 deficiency, but I suspected long standing type 1 diabetes or post covid syndrome. Have you had those things?
Hi @fela0218 . Thanks for asking .
His follow up on Monday went well !! Thank God .
His EMG back on August was normal . His clinical exam was normal too this past Monday . Dr saw only two fasciculations on his right calf . She said they seem benign , she was very reassuring since his clinical and EMG are normal . She said all the stiffness and fatigue can come form back problems . He needs a low back MRI . He does exhibit a very sporadic involuntary movements that seem to be myoclonus . He was referred to a movement Dr . He has an appt on December for that .
Thanks again !
I think I mentioned his back! I get leg pains and low back pain all the time..I should get a back MRI as well. I need a revisit with my neuro doctor. Keep us posted! God Bless you
Been on similar journey. Have you seen neurologist?
Also did you get sick before it all started? Or anything else?
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.
So appreciate you sharing your story. Like you was always active but before I hit 40, now 42, I went thru something. I think healthy anxiety created my symptoms
Thank you and I can totally relate to issues where your body is not what it used to be, and to not know what’s causing it is the worst part.
Being in pain everyday and hurting to walk on numb feet and legs is the worst.
It’s a disease that’s affected me over the past 12 yrs and no one can help me find a solution.
It’s taken over my life completely, and it’s no fun.
I’m hoping someone will be able to help me eventually.
Here’s hoping you get some relief also.