Long haul Covid tremors and muscle spasms

Hi, and thanks!

The ME/CFS diagnosis doesn’t really fit because I am not really fatigued. The PEM is also linked to long covid, which landed me here, and I was surprised to see many similarities here wrt fasciculations and internal buzzing. My docs have nothing. The neuro says I don’t have ***. I also think FND is a fit, but so far nobody will provide that diagnosis. At the end of the day it is what it is, and I’ll figure out how to cope. The engineer in me wants to solve it, however. After way too much time on the web, I am convinced there is much we don’t know with many of these conditions. It is hard not to sound like a lunatic when discussing the symptoms (bad pun).

I have severe muscle contractions and tremors during sleep. They occur when I attempt to change position and only after I have been asleep for at least six hours. This began in October of 2023 and happens virtually every night. I went to see a neurologist who said she had never heard of any such thing and dismissed me saying maybe it would self resolve.

I have found help with acupuncture, for multiple symptoms I have with long covid.

Hi there, any results from the 2nd opinion? No answers from my neurologist as well, but I've had the muscle spasms (fasciculations) for almost 2 years now. Also terrified of ALS.

I've had the fasciculations for almost 4 years now. The neurologist I went to ruled out ALS, she said a known trigger for benign fasciculations syndrome is a preceding viral infection, in my case Covid. My fasciculations got worse after each Moderna vaccine, I had two of them.
She also said the fasciculations might go away on their own, or they might not. Since I've had them for almost 4 years now and no other signs of ALS, I'm pretty confident she is correct about it not being ALS. Hope that might help give you some peace of mind in your case as well. 🙂

Hi!

I have a had a few things going on, muscle twitching being one of them (for complete story see previous post). I went down the ALS hole for a while but am now out. I have a friend with ALS and what I have going on is not (even close) to the same. He has gone from active athlete to wheelchair in 6 months. What seems to be working for me: Push through the discomfort / weakness / twitching and eat healthy and exercise. In my case this seems to be helping, albeit it is a grind.

i have tremors/vibrations/tingling too. and have diagnosed myself endlessly as no diagnosis is forthcoming from my doctors. because my symptoms worsen after eating (as well as at rest), i am looking at small fiber neuropathy as a possibility. you might check out matthew jensen polyneuropathy video lectures on youtube. i found them helpful.

Please pass along any help for this you recieve.
I'm going on 3 years of the same, and all tests, mri, emg are all good, not explaining the spasms and pain.
THANKS NORBERT

Hello,
I have had similar experiences with muscle cramps (severe and debilitating), twitching at times, spasms so bad my feet or leg or fingers will lock in a spasm, very painful. Usually, it is in my foot or leg area and wakes me up in middle of night. Worse since having long covid. My doctor told me to take Magnesium Glycinate and Magnesium Oxide. Glycinate for muscle cramps, Oxide for Constipation. Might sound weird, but the problems seem to be related. I added in LMNT electrolytes and plenty of water all day. It seems dehydration and low magnesium in my system triggers these events. When they happen in the middle done, as painful as it is to get up and walk, I go get magnesium and drink at least 16 ounces of water and put a heating pad on the area. This has been a tremendous help. Hope this helps!

my LC Dr. has suggested antihistamines. H1 and H2. allegra in the a.m. and pepsid in the p.m.
still early for me. supposed to take 4 to 6 weeks to become effective.
anyone else tried this? and with what results?
thanks