Persistent Muscle Twitches throughout Body

I know this is an older thread, but I have these same issues, and every doctor seems stumped. I went through the Mayo Pain Rehabilitation Program a few months ago, and it could be part of central sensitization, but it is so weird.

My left hand ring and pinky fingers will twitch any time I relax my hand. If I'm up and around doing things, that's really the only twitching I have. As soon as I lay down, even just to watch TV, my body goes into full twitch mode: left foot, left leg, abdomen, sometimes my shoulders and back. If I try going to sleep, it depends on my position. If I'm on my side, it's the two fingers on my left hand, abdomen, and left leg. If I'm on my back, it’s my whole left arm, left leg, and abdomen. I also get random nose and chin twitches.

We recently took a flight and my wife said she had to hold my arms down because I started twitching so bad, she thought I was going to hit someone. On a flight over the holidays, I would try to nap and get awakened by an entire body spasm. It's awkward and embarrassing in public. Some twitches have been so strong that I've actually felt my back pop on its own. Crazy, huh?

I've seen Mayo neurology and several others. I've had 5-6 EMGs done and all confirm polyneuropathy. I can't fully feel my toes (both feet) or my left hand. MRIs have shown no signs of lesions, so that's a positive. I have an appointment in two weeks with Mayo sleep medicine to follow up on my apnea, so I plan to discuss all of this with her. I'll get a few hours of sleep and then wake up from something and be wide awake. I suspect a spasm, but I have no clue. I'm just living with them the best I can!

I can relate to your situation. I have fasciculations 24/7 in my legs. I can see them but only feel the stronger ones. It is worse when I am not distracted, especially at night. I too wake up in the middle of the night and cannot fall back to sleep. Sometimes they are bad enough that they cause cramps which are really painful. While my legs are the primary site, I occasionally get them in my biceps, hand, torso, eyebrow as well.

My neurologist has ruled out everything but ALS and BFS and has me scheduled for a 3 limb EMG in two weeks. It can be very frustrating.

Good luck.

I have had the exact same issue you have mentioned for almost the past 20 years. They come and go in intensity. I have had multiple EMG/NCS and a bunch of blood work ran. I was told I had benign fasciculation syndrome. I also developed idiopathic peripheral neuropathy of my feet about three years ago. Not sure if they’re related, but I believe they are. As long as you don’t have any weakness, I would not worry about them. Still get everything checked out for peace of mind.

My idiopathic polyneuropathy hit first, so almost a 180 from your experience. I've had both for almost two years now. Everything hit suddenly in February 2023 after other little minor incidents. The fasciculations have been strange in my torso because they started heavy in my back and have migrated mostly to my abdomen. The PRC taught me to just ignore them, so I try to until I get a severe one that is painful or, what I presume, is waking me up at night.

Hi, I came across your posts and have been experiencing twitching all over my body for 3 weeks now. It’s very noticeable when I’m resting and laying down to sleep. How did your appointment with the neurologist go? Are you feeling better?

Posting an update here as I posted a few years ago..

I'm about 3.5 years into my twitching that started 1 month after covid, my fiance who had the same covids/vax as me also began twitching just a month after that.

I am unfortunately looking like an MND case, I have reduced swallowing function seen on swallowing tests, and diagnosed with double vocal cord atrophy, as well as pinky/ring finger weakness.

I have no official ALS diagnosis still, but I suspect my next neuro visit will confirm it even though my last EMG was only indicative of peripheral nerve hyperexcitability, I don't believe anything else can explain the progressive weakness including bulbar involvement, with the twitching.

I would not assume that it is ALS. It seems like that would be an unusually slow progression for that. However, the symptoms are concerning. Good luck.

5-10% of patients live over 10 years after diagnosis, a significant number also get diagnosed after years of "first symptoms".

The numbers are deceptively misleading when you hear 3-5 year life exptectancy after DX, because most people don't get diagnosed until several years of symptoms.

Nothing else explains the fasiculations with progressive asymmetrical weakness that also involve my bulbar regions..

I agree.

I developed significant fasciculations almost 2 years ago but last fall a 4 limb EMG did not lead to an ALS diagnosis. I haven't experienced any muscle weakness or atrophy so am trusting that they were right even though the fasciculations persist. There is always some doubt in the back of my mind.

Hi all. Just joined as I’m desperate at this point. I had sepsis back in September that lead to me having my gallbladder and appendix removed. Developed paresthesia in my right leg a day post op. Then a week or two later developed twitching ALL over my body. Nothing wrong with my brain and cervical MRI except a few protrusions in my neck. EMG scheduled for November. No muscle weakness. Rheumatologist ruled out common autoimmune disorders. Only thing that came back abnormal was a past mono infection and a high spike protein lab for Covid. I’m at a loss.