Muscle jerks when resting

[Ingold12]

Hi everyone, since a few months ago, a while after the start of my ME/CFS symptoms, I have had some sleep disturbances which I would rank as one of the most annoying symptoms.

Usually I would jerk myself awake right at the moment of falling sleep and, when I finally managed to get rest, I would have vivid and incoherent dreams which are very atypical for me and often led me to an early awakening. I'm on a low dose sleep regulator which seemed to help with this.

Now, almost 4 months later, I get small muscle spasms on my legs, arms and hands which happen when I'm simply relaxing or dozing off, before falling asleep. Sometimes it feels like I'm enacting a movement I'm imagining in the moments before sleep.

Does this happen to anyone else?

 

[Nord Wolf]

Hi @Ingold12 . Yes I have had issues with severe full body muscles jerks when I am falling asleep at night or by day with naps. Usually if my symptoms are elevated, the jerk awake symptom will happen more often, even as much as keeping me from falling asleep for hours during the day, and even if I'm so exhausted I can't think straight or hold my eyes open.
I have over 50 major symptoms, of which some are brutal, that go along with 5 diagnosed conditions, so for me this jerk awake one is on the lower end of the annoyance scale.
So far I've not found anything to ease it, beyond the lowering of flare ups in general. My wife has Parkinson's and she also experiences the jerking awake, but for her it has lessened dramatically with her PD meds.

 

[hapl808]

I believe this is often called myoclonus in medical terms.

In addition, what you're describing sounds like what they've grouped into the disorders called either Restless Leg Syndrome or Periodic Limb Movement Disorder.

I'm always cautionary, as an acronym doesn't mean it's a discrete disease or understood in any way. They just agreed on arbitrary symptoms, and sometimes some treatments.

 

[sometexan84]

I believe this is often called myoclonus in medical terms.

In addition, what you're describing sounds like what they've grouped into the disorders called either Restless Leg Syndrome or Periodic Limb Movement Disorder.

I'm always cautionary, as an acronym doesn't mean it's a discrete disease or understood in any way. They just agreed on arbitrary symptoms, and sometimes some treatments.

Good info, thx! You're right "nocturnal myoclonus" is now called Periodic Limb Movement Disorder (PLMD).

Now that I know that, it's easier to find info on this!

By the way, apparently PLMD is also associated w/ ADHD

Also, "iron deficiency and decreased ferritin may aggravate PLMS "
https://www.ncbi.nlm.nih.gov/books/NBK560727/

 

[Ingold12]

Hi @Ingold12 . Yes I have had issues with severe full body muscles jerks when I am falling asleep at night or by day with naps.

I also haven't found a way to ease it and at some point I was even getting muscle jerks while awake (that was the reason for me getting admitted to the hospital). For me it seemed to come together with another symptom, a very strong startle reflex.

Two factors that seem to worsen it for me are anxiety and caffeinated drinks.

 

[Ingold12]

Good info, thx! You're right "nocturnal myoclonus" is now called Periodic Limb Movement Disorder (PLMD).

Now that I know that, it's easier to find info on this!

Thanks for the info! Sounds like this is not an uncommon symptom for ME/CFS patients.

 

[Nord Wolf]

I’ve looked at Periodic Limb Movement Disorder, as well as Restless Leg Syndrome before. What doesn’t add up in my case is that they talk about the movement disorders affecting the legs, but nothing else. For me, the jerking when falling asleep is either arms or full body. I never notice the legs unless it is a full body jerk; arms down to legs.

I also get the nerve crawling sensation mentioned in RLS, but again, full body, not just in the legs.
So, I’ve always found it odd that those two disorders only speak of leg movement.

 

[hapl808]

Yeah, my muscle jerks are anywhere in the body. They tend to only happen when I'm more tired or my ME/CFS symptoms have worsened.

 

[Nord Wolf]

I just read on this site:

"In some patients, the limb movements can occur in the upper extremities as well."

https://my.clevelandclinic.org/health/diseases/14177-periodic-limb-movement-disorder-plmd-in-adults

So it seems it can affect the whole body...

I have not really found a pattern to this in me yet. Sometimes it happens a lot, and then can be absent for a long while.

 

[Ingold12]

For me it definitely affects more my arms than my legs.

What I find surprising is how abruptly the sleep myoclonus started and how it randomly tends to worsen or improve with time.

 

[sometexan84]

Thanks for the info! Sounds like this is not an uncommon symptom for ME/CFS patients.

It's not a super uncommon symptom in ME/CFS. But I've been curious about it because 2 people in the Interferon Lambda group have had this issue while on this treatment.

I know it's an imbalance of sympathetic and parasympathetic (heavy on sympathetic), but aside from that I'm not too sure. So I want to learn more.