Welcome @dt200r, You mentioned your symptoms were classic PEM. I did find some information that might be helpful while you wait for other members to respond.
"The pathognomonic symptom of ME/CFS is post-exertional malaise (PEM) or post-exertional symptom exacerbation."
-- Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext
Did your doctors mention PEM or ME/CFS?
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've had 2 moderna shots and a booster in March 2022. I got covid in mid-June 2022. Mid-July I was feeling slightly weak. I took 1000mcg of B12 once a day. Late September 2022 I started getting muscle twitches. My Dr. referred me to a Neuromuscular Dr who did an EMG test. He did the test 3 days before I got another virus...not sure what kind. He said 95% chance I have ALS. After getting the 2nd virus I was more fatigued and weak. I'm scheduling a 2nd opinion. I'm also looking for a post-covid clinic. I've known 10+ people with similar symptoms. Some last longer like me at 64yrs... some younger people get over it sooner. I hope the Dr is wrong with the ALS diagnosis.
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.
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 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 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.
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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).
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Helpful -
Hug
2 ReactionsI 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.
-
Like -
Helpful -
Hug
2 Reactionsi 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.