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Muscle twitching (Fasciculations) and Limb jerking (Myoclonus) in ME

Dysfunkion

Senior Member
Messages
189
I get myoclonus usually in my lower body when I'm sleeping, the worse it is, the worse my insomnia is that night like my brain can't turn off for some reason. Like someone else here b12 helps but only methyl at 1000 mcg. I don't go over that much though.
 

Kailyn

Caregiver of a person with very severe ME/CFS
Messages
65
My husband has been experiencing these for a week now. Specifically myoclonic jerks. He experiences them several times a night while sleeping, but it also seems to be correlated with that he startles extremely easily now.

He feels some his “telltale” PEM symptoms from the jerks, and is assuming they are giving him PEM. During this time, he has had several PEM triggers a day, and his threshold is very low.

He is very severe.
 

Nord Wolf

The Northman
Messages
594
Location
New England
I get strong Myoclonus/Hypnic Jerks, but only when daytime napping. I rarely ever have it occur at night. No idea why. I’ve yet to find anything that directly influences it one way or the other.

My wife, who has Parkinson’s, gets the same thing during nighttime sleep. Hers are very strong and seem to vary depending upon her medication dosages combined with levels of Mucuna pruriens she is working with, whether four or five per day. Interestingly, the strength and quantity of her Myoclonus seem to have little to do with the levels of her waking tremors.
 

Kailyn

Caregiver of a person with very severe ME/CFS
Messages
65
I’ve so appreciated this thread, as this has progressively become a bigger issue for my husband.

Question to anyone willing to answer-

Do your myoclonic jerks or fasciculations give you PEM?

Have/did you also notice an increased “startle response,” such as when someone enters the room?
 

Atlas

"And the last enemy to be destroyed is death."
Messages
128
Location
New Zealand
@Kailyn usually they're an indicator for me that I've overdone activity, for me pem is kinda more fluid these days, I can get just a little and then everything slowly gets worse unless I reduce activity for a day or two. So the myoclonic jerks are kinda an indication of being some ways into pem. I don't notice them causing more PEM, but they do wake me up in my sleep sometimes with full body or neck/head spasms which obv isn't a +.

And yea, when I get them, mostly at night, but sometimes in the day, the "startle response" does become higher. And startle response even triggers it happening to some of the same muscles that go at night.

For me It all usually goes away completely when I have been resting more.
 

Violeta

Senior Member
Messages
3,009
My husband has started to have this problem.

This is all I have found about it so far:

Insufficient levels of neurotransmitters, such as dopamine and serotonin, can impair the correct communication between the brain and muscles, and thus lead to movement disorders such as myoclonus.

I gave him some Butcher's Broom and l-acetyl-tyrosine the first time I noticed him having them, and he said it helped. I don't think he takes it consistently, it's hard to monitor what he takes.
 
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