Benign fasciculation syndrome (BFS)

I know… it’s weird and frustrating…. I get all those strange sensations….. tingling around my lower calves around my bridge of my nose… too many things to list

Thank God I'm not alone. May the peace of the Lord be with you.

I started twitching 1 year ago in the beginning of June 2022. It was in my bicep and perpetual for a couple days then spread all over. Now it's 24/7 particularly in my calves and lower legs but can be anywhere. I feel about 1 per second or so perpetually now. It's never gotten better but it's maybe gotten a little worse over time.

I first noticed some irritability, jitters, and "electrical" sensations in my right arm after recovering from mild COVID in January 2022. I ignored it and even ignored the bicep twitching at first.

Seem a lot of docs including Mayo, tried all the supplements and many medications and lifestyle changes including CPAP and other things. Nothing has affected it at all. Not for better or for worse. It seems completely independent of anything I do or what's going on. Very automatic like clockwork.

Docs are completely stumped and essentially just have no idea, no diagnosis or treatment.

I try to just ignore it and live a healthy lifestyle. Ignoring it truly impossible. I'm not exaggerating when I say it's terrible feeling my muscles perpetually contracting forever. It's like the worst case of body wide hiccups but lasts forever, every second of everyday and night.

I wish Mayo would research it and find some answers and treatments but AFAIK it's not on the radar for any research and of no concern in the medical field. It seems too rare and not considered life threatening so it's just ignored by science. Really makes me feel hopeless that science has no interest in figuring this one out. I know I'll have it forever and medicine will never be able to explain it or help me.

I also resent the nickname Benign Fasciculation Syndrome, it's like saying Benign Blindness Syndrome. There are a lot of conditions that aren't fatal but make the quality of life terrible for some people. The name itself is a stigma to prevent concern and research in the medical field.

This is the only time in my life I wish I were filthy rich so I could fund research and get this figured out. I am a firm believer that it would not be exceedingly difficult to understand and treat with modest research.

Having a very rare syndrome is truly heartbreaking in many ways. And irritating. Very irritating.

I've had this condition for over 2 years now. It started around the time I started working at a large hospital during the worst of covid, so I'm pretty sure that's why. It's been relentless; the worst is in my temples. Its just so awful to live with, and I'm so sorry to everyone else who has to live with it too. I've tried everything from physical therapy to neurological testing, chiropracter, massage, bloodwork, etc. Nothing really helps. I'm trying gabapentin now but not all that hopeful. I have a hard time working now, self-isolate a lot, basically it feels like my whole life as I knew it ended when this began. It's validating to know I'm not the only person who has this but I wish absolutely no one had it.

Honestly stress and anxiety can cause the weirdest things. When I got the under control they seem to calm down. I went through a rough time the past two years which I believe truly triggered my BFS

I started noticing mine after I recovered from COVID. I think it's somehow related to either COVID, my autoimmune response to COVID, or the medications I took during it. I'm going on 1 year and zero things affect it from what I can tell. Never was worried about a serious disease. But it has changed my life a lot. I am a 24/7 twitcher. I haven't gone longer than about 30 seconds without my muscles contracting in the past year. I normally feel it about every 1-2 seconds. It's relentless and brutal. I've tried everything everyone has suggested. Seen all the docs and tried all their suggestions so far. Nothing changes it for better or for worse. Seems to be a permanent chemical/DNA change type of thing that science doesn't understand yet. And unfortunately, has no interest in understanding.

I’m a 29 year old male who has had continuous twitching for roughly two years now. It happens all over my body from head to toes and there is no body part that is exempt from the fasciculations. I finally got an EMG done and was diagnosed with BFS. The twitching continuously interrupts my sleeping pattern and frequently distracts me if I’m at work. I think the biggest issue I have is how anxiety driven is has caused me to be for the past couple of years. My neurologist prescribed me a medication called carbamazepine but after having my doctor tell me about the many side effects it causes and me needing to constantly get blood work done because of it commonly messing with your blood count I’m feeling like this medication is a little extreme. I guess I’m mainly here to get advice on how I should proceed now.

I am on probably the highest levels of carbamazepine you will ever meet or speak to. My symptoms similar with a diagnosis of Peripheral Nerve Hyperexcitability, Cramp Fasciculation Syndrome Benign. For me it helped tremendously and the side effects, well nothing detrimental that I can think of ever. I am also on high levels of baclofen and gabapentin. We are looking to keep me comfortable as there is no known cure and hopefully research somewhere somehow can stop this wretched horrible mind bending uncontrollable way of life for me and others.

Anybody experience muscular pain in the shoulders and thighs , seems to ache more when resting and it’s pretty painful at times .

I am wondering if medical marijuana would help you in this situation. It might be worth a try if you haven't gone down that avenue.