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

[Pyrrhus]

I thought I would start a thread to summarize people's experiences with either muscle twitching (fasciculations) or limb jerking (myoclonus) in ME.

• Fasciculations are entirely involuntary twitching of a single small part of a muscle, but not jerking of an entire muscle or limb.
• Myoclonus is jerking of an entire muscle or limb, which may be related to, but is distinct from fasciculations. When it occurs while you are falling asleep, they are called hypnic jerks.

Note that there are also other types of involuntary movements in ME, such as tremors, cramps, eyelid twitching, restless legs syndrome, etc.

There are myoclonic jerks, and there are also fasciculations.

I believe that fasciculations when they occur are localized to one muscle, or part of the muscle, like the twitching hand muscle in this video.

Whereas myoclonic jerks are movement jolts that involve larger portions of the body, as shown in this video.

 

[Azayliah]

Fasciculations: Ones matching what's in the video occur only a couple of times a year. But when I start relaxing to go to sleep, several small muscles in my arms and legs twitch for a few seconds. It's very noticeable after walking around; within minutes to an hour of laying down, several small muscles in my legs twitch for a few seconds and then stop. It feels like the muscles are relaxing in steps instead of smoothly. I'm pretty sure my muscles have trouble relaxing after being flexed, which may have something to do with this.

Myoclonus: Mine are usually strong, sometimes painful hyping jerks. But it seems that focusing a lot on how an area is feeling can sometimes cause jerking that looks like what's in the video. I've learned to tell body parts to relax and then move on, not dwelling on them too much.

Other (pretty sure they don't fit into the above categories):

• Tremors and wobbling; weakness? Not fatigue, more that my legs won't hold me, or can't open the fridge.
• Numbness; paralysis? Comes and goes in stomach, back and top of head, face, neck & throat, tongue.
• Slowed movements; stiffness? From flexing, being cold or still for too long.
• Something weird; no idea. Felt muscle connecting shoulder to elbow slide from one position to another, like the central part of the muscle was oozing over a hump.

 

[Flnn]

I used to have this thing very often in certain muscles, now it's lesser for sure but still have it sometimes...

 

[Revel]

I get myoclonus, affecting head and arms, if I have to take a car journey. Short rides are ok, but anything longer than 10 minutes and I start to "wilt", followed by the jerks.

I have assumed, in this case, that it's due to sensory overstimulation. Shielding my eyes with a blindfold works well to avoid this symptom.

 

[Martin aka paused||M.E.]

The worse I am, the more severe these symptoms are. While I took Abilify it was all gone. On Wellbutrin it's also noticeably better. Sth is going on with neurotransmitters here, I'm quite sure!

 

[SnappingTurtle]

I used to get myclonic jerks in my legs and (less often) in body last year. These would either keep me from falling asleep or wake me during sleep. I believe it was from medication I was taking to help with neuropathy and muscle aches from PEM. Could be savella or lyrica. I also thought that maybe I would get them when my PEM symptoms are really bad...

It also happened a few weeks ago but went away after a couple of days. Unfortunately, it coincided with two changes, so I cannot tell what might have caused it: an increase in gabapentin (I had been in another awful rolling PEM relapse) and 1 to 2 weeks prior, got my Pfizer covid shot #1.

I only got a few of these jerks in each night but it was enough to be concerning. It must be very frustrating to have these all the time and not be able to yet find a way to stop or prevent them.

 

[Pyrrhus]

Thanks, everyone, for sharing your experiences!

Here are some reports from a 2010 thread:

Fasciculations have been an almost ever present issue for me since the start of this condition nearly three years ago. My Fasics happen in quite large muscle groups, not just eyelids or fingers. At my worst, I was having about 30,000 per day. Now only about 1,000 - 2,000 daily.

Even the neurologist I saw when I first developed a constellation of about 25 various symptoms within a couple of months of the onset of M.E./FMS seemed clueless. What gives with these guys?

In no way can I be persuaded to believe that these are 'benign fasciculations' when they are so blatantly associated with other neurological symptoms (PN and GP), as well as the timing of their onset which was when I was initially so ill in 2007.

Twitching, fasciculations, etc...

Very glad this topic came up, thanks for starting it.

I've been a twitcher off and on for years now, perhaps even before I was officially diagnosed with ME/CFS.

It will go away completely for months, even a year or so at a time, but then comes back, often after 'overdoing' it. I think it there can be many contributing factors, or many possibilities.

One time, I was having a spell where I was having twitches on one side of my...well...backside, which would come and go. Well the twitches stopped for a few days and I thought this little episode was over, but it returned at a rather inopportune time, and I found myself standing in a long line at the food court at the mall with half my butt jumping at random intervals.

i had severe twitching.. i ended up having issues with severe spasms and where even my head was being thrown side to side at times with it. Others said it looked as if i was about to go into a full grand mal seizure. i ended up being diagnosed with myclonus

this has been happening when i try to sleep lately. as if my body has found one more way to wake me up. the first time it was my fingers & upper lip. the next time was my arm, then the other night arm shoulders & head all at different times.

I think this twitching may have something to do with a vitamin deficiency caused by this disease because when I take all my supplements and vitamins it seems to get better.

I've had some level of fasciculations (muscle twitching) for the entire 20 years that I've been sick. It gets worse when I overdo it or if I've had a bad night's sleep. It's better when I've rested. I do think that taking magnesium supplements have cut it down somewhat but it never completely goes away.

I've had twitches in almost every muscle in my body (but not at the same time) and in places where I never even thought about having muscles. I've experienced twitches in the soles of my feet, on the top of my head (raise your eyebrows and you'll realize that, yes, there are some muscles there), on my stomach, back, arms, legs, etc. So, maybe one day it will be my upper left back, then the next day it's the arch on my left foot (actually that one is happening now as I'm typing), then the next day it's the forearm of my right arm. Then maybe no twitching for a couple of days.

I never know when it will happen, or which muscle it will be, or how long it will last. And as I tried to explain to the doctors, I cannot replicate the muscle movements voluntarily. That is, when the muscle twitches it seems to be one muscle alone, or maybe two muscles, but if I try to move that same muscle voluntarily then a whole group of them moves (if that makes any sense at all).

The twitching shows if the body part is uncovered, e.g., my arms, or my bare feet (they are bare now and I can see that arch muscle jumping) but it doesn't seem to show through clothing (not that I've noticed).

 

[Pyrrhus]

And here are some experiences from a 2012 thread:

Next came strong jerking flying out of the limbs - usuall after exertion. A leg would jump half a foot in the air, followed by an arm flinging out sidways and i would twitch and jump like this for a few minutes - sometimes ten, maybe 5 times a day at its worse. When it got really bad my head would snap round and my shoulders twist and my arm and leg on opposite sides would fling out - sometimes it felt painful. Now i am improving this has nearly gone completely too.

That is what I got diagnosed with "rhythmic myoclonus" which can affect my whole body.. . if i focused extremely hard sometimes I could stop it. thou it used to happen spontanously. Other times it would just happen in a section of my body. My body would do that for minutes. or sometimes for hours (one time it did it for 3 days straight.. constant rhythmic myoclonus which didnt stop until I had complete over night rest when I got put into hospital for the neuro symptoms).

I only get rare arm or foot jerks, though when almost full asleep I do occasionally get a myoclonus full body jump.

Neurologists don't take twitches very seriously. Unfortunately, movement disorders are seen as a sign of hysteria so not a lot of hope for anyone who already has a diagnosis of CFS.

I used to get violent whole body spasms as I tried to fall asleep. It would be like someone would punch me in the stomach. With research I learned it was much like what is described as "propriospinal myoclonus". I had no clue what if anything to do about it, but it was very disruptive. If I tried to relax and fall asleep, it would hit. So I'd have to fall asleep while reading, in other words, slow down my sleep onset.

 

[Pyrrhus]

And here are some more experiences from other threads:

http://en.m.wikipedia.org/wiki/Fasciculation

I understand muscle twitching is quite a common symptom in ME/CFS. I think I saw Dr. José Montoya state that it's a common feature in some neurological conditions so might point to neuro involvement in the pathophysiology of CFS/ME as a condition generally.* Otherwise I don't think much is known re cause in ME/CFS.

I had it quite a lot at the beginning, it's steadied over time but I get sometimes repeated whole body jerking when getting off to sleep.

I've been having trouble with twitches/spasms the past few months. Mine mostly occur on one side of my face. They can also progress to my shoulders and upper body jerking. Once and a while I'll have an arm or leg jerk, kind of like when they test your reflexes in the doctor's office and your leg kicks.

I have over the past few moths been getting a new symptom where little muscles all over my body will randomly twitch or spasm like a little "popping" sensation.

does anyone know what can cause this? I feel like it is some sort of electrolyte deficiency or imbalance? but not sure which one specifically

muscles fasciculations (muscles twitches) started 2 months after I started Azithromycin and two weeks after I started Doxycycline....(together with muscle pains)

it stopped when I stopped these antibiotics.

Twitching was my first symptom that brought about noticeable concern, mine started as an eye twitch that lasted a few weeks but then seemed to start moving around to my arms, legs, and low back. Early on it was much worse and very noticeable, I too was fearful of a dreadful neurological disorder. That was nearly two years ago, and while I still twitch at times, most noticeably at night when I lay in bed or while I am relaxing on the couch, it has become less frequent and less intense.

It seems to me the more I push myself the more twitching I get. I get them in the eyes, the left side of my mouth, the right arm. [...] The funniest twitches I get is the muscles that my glasses sit on behind my ears. My glasses will actually wiggle on my face.

I had leg twiching and eye twiching for several years before I developed ME/CFS.

Occasional leg twitches persisted during my illness, but doctors were never able to captured them during EEG because they only happen a few times per day. All brain MRIs I had were normal.

I have progressive type of ME/CFS, constantly getting worse and developing new symptoms, and about a year ago my twitches progressed into full fledged mycolonus

Also , when I lie down or try to sleep , the twitches get much worse and I guessed it's because I'm trying to relax and not on guard .

Do you get muscle contractions as well or leg kicks and arm jerks and flops ?

I had leg kicks and arm jerks for a very long time when I tried to sleep and long before all this illness but I just ignored it and thought it was because I was tired.

Sometimes it's just elbows and leg kicks, other times it's whole body twitch where my whole bed shakes. I think I got use to do it well I just sleep through it now. The pattern I notice is more tired/more closer I get to falling asleep the more intense the twitches are.

 

[judyinthesky]

I get myoclonus, affecting head and arms, if I have to take a car journey. Short rides are ok, but anything longer than 10 minutes and I start to "wilt", followed by the jerks.

I have assumed, in this case, that it's due to sensory overstimulation. Shielding my eyes with a blindfold works well to avoid this symptom.

Yes always a reaction to either using muscles too much or overstimulation of nerves

 

[livinglighter]

I get fasciculations from time to time.

 

[Celandine]

Daughter still regularly gets fasciculations in many muscles even though she is quite well day to day. Feet, hands, arms, stomach etc. Sometimes she feels her foot twitching to the point where it feels like it's about to go into full cramp, but then settles down.

 

[cristi_b]

I have continuous fasciculations in the lower part of my legs(calf), they are visible if the muscle is an relaxed state, it's just like the muscle fibers there have a mind of their own. Since most of them are small contractions(just a few fibers of the muscle at a time) they are not that bothersome, I don't feel them usually, I have look at my legs to notice them. Occasionally there are larger contractions, those I feel: it's like something pulling under the skin.

I can get contraction in other parts of my body(hands, back etc) but they are not that frequent.

 

[Tammy]

I have continuous fasciculations in the lower part of my legs(calf), they are visible if the muscle is an relaxed state, it's just like the muscle fibers there have a mind of their own.

Same. Left calf only

 

[CSMLSM]

I used to have involuntary twitching and jerking of muscles.

In legs, arms, torso and face. High dose B12 helped with a lot of it due to it being related to that I think.

I was even diagnosed with an essential tremor in recent years, now gone as far as I can tell.

The immune modulation I achieve using CBD and caryophyllene has silenced the rest.

 

[Mimicry]

I noticed several years ago that salt helps my fasciculations. I'm guessing I'm low on aldosterone and it's been gradually getting worse year by year, because nowadays I also feel dehydrated and hungover and finally start vomiting + get muscle pain if I don't get enough salt. Apparently I need 4 teaspoons of extra salt daily (I dissolve it in hot water and wait for it to cool down).

 

[CSMLSM]

I noticed several years ago that salt helps my fasciculations. I'm guessing I'm low on aldosterone and it's been gradually getting worse year by year, because nowadays I also feel dehydrated and hungover and finally start vomiting + get muscle pain if I don't get enough salt. Apparently I need 4 teaspoons of extra salt daily (I dissolve it in hot water and wait for it to cool down).

In my opinion this would point to low electrolytes such as magnesium and potassium, feeling dehydrated would fit and needing extra salt/sodium, also an electrolyte.

Increased salt and fluid intake are treatment options for managing Postural orthostatic tachycardia syndrome(POTS) to raise electrolyte levels and help with issues with holding onto water.

Maybe you urinate frequently and get dizzy when standing often.

Likely have issues with HPA axis which is part of what causes POTS.

Lack of vitamin B12 can affect the regulation of the HPA axis.

 

[Mimicry]

In my opinion this would point to low electrolytes such as magnesium and potassium, feeling dehydrated would fit and needing extra salt/sodium, also an electrolyte.

Increased salt and fluid intake are treatment options for managing Postural orthostatic tachycardia syndrome(POTS) to raise electrolyte levels and help with issues with holding onto water.

Maybe you urinate frequently and get dizzy when standing often.

Likely have issues with HPA axis which is part of what causes POTS.

Lack of vitamin B12 can affect the regulation of the HPA axis.

Yup, I totally have POTS and HPA axis dysfunction because any meds that block the RAAS system (like candesartan which I tried for my migraines) make these symptoms much worse. I'm low on cortisol but my ACTH test three years ago showed that my adrenals work fine, so I'm guessing I have hypopituitarism. Unfortunately doctors in Finnish public healthcare don't care and have zero clue about this stuff. I'm saving up for a private endocrinologist.

 

[CSMLSM]

I'm low on cortisol but my ACTH test three years ago showed that my adrenals work fine

Maybe adrenal fatigue as ACTH is being produce normally I presume from what you said but your cortisol is low.
The receptor systems within the HPA axis feed back loop may have adapted to the fatigued adrenals putting out less cortisol and so giving you a normal ACTH instead of increasing it to raise the cortisol levels.

Sorry it has been a long time since I did the research on this and I was too ill to make notes, but I think this happens when you have prolonged HPA axis over activation.

Maybe you have an exaggerated response to stressful stimuli and then as a result of this get physical crash/fatigue because the receptor systems lose sensitivity.
Following rest and avoiding stressful stimuli the receptor system would then become more sensitive and you would go back to the original ill state but without the crash.

Sorry if that does not make sense I have fragmented memory due to bad episodes of B12 deficiency which actually I found contributed to adrenal fatigue in myself.

 

[woozy]

I have been getting very bad hypnic or myoclonic jerks at night too. It wakes me up with a jolt and sometimes I feel a bit faint for a few seconds. So I am having trouble getting deep sleep at the moment and am having to just have short naps instead or stage 1/2 sleep only. WHat I also get are tremors.