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.