Fasciculations/Vibrations

tearydawn

Active Member
One of my most bizarre symptoms is body wide fasciculations or a vibration sensation throughout my body. Not the sensation of a vibrator attached to one spot, which I have also, but feeling your muscle fibers constantly shaking with mini twitches all over the body. At times, this could be felt by my husband as well as my doctor. During these times when the feelings were intense, I appeared to have weakness in my right leg as it would not maintain a muscle contraction.

Anyone else experience these bizarre occurrences? I'm currently on Elavil which turned down the volume but have recently felt them come back. This has been going on since April of last year. Not once have I been referred to EMG or nerve conduction studies. One doctor suggested muscle atrophy but no on is looking into this for me. Waiting on a new neurologist who might give me some answers. They are 24/7 just either turned up or turn down.
 

Khorwitz1

New Member
One of my most bizarre symptoms is body wide fasciculations or a vibration sensation throughout my body. Not the sensation of a vibrator attached to one spot, which I have also, but feeling your muscle fibers constantly shaking with mini twitches all over the body. At times, this could be felt by my husband as well as my doctor. During these times when the feelings were intense, I appeared to have weakness in my right leg as it would not maintain a muscle contraction.

Anyone else experience these bizarre occurrences? I'm currently on Elavil which turned down the volume but have recently felt them come back. This has been going on since April of last year. Not once have I been referred to EMG or nerve conduction studies. One doctor suggested muscle atrophy but no on is looking into this for me. Waiting on a new neurologist who might give me some answers. They are 24/7 just either turned up or turn down.
Yes! It is called Myokimia - my neurologist just diagnosed me with this. He could see it on ultrasound. 9 also have fasiculations I don't feel - which can lead to muscle fatigue. He prescribed super low dose zanaflex - 2 mg once per day to start.
 

tearydawn

Active Member
Yes! It is called Myokimia - my neurologist just diagnosed me with this. He could see it on ultrasound. 9 also have fasiculations I don't feel - which can lead to muscle fatigue. He prescribed super low dose zanaflex - 2 mg once per day to start.
I'm still waiting for a new neuro, so hopefully she can help me figure this out. Did you have an EMG done? Where did they do the ultrasound? I had one on my hands and knees which showed inflammation and tendonitis along with inflammation where my ligaments attach to the bones. Doctor never said much about it though.
 

Paw

Well-Known Member
I get a range of similar symptoms -- all confirmed by nerve conduction studies (I forget the name at the moment -- the kind where they stick all the electrical needles into your muscles?). My neurologist never used the term myokimia -- just peripheral, small-fiber, and autonomic neuropathies. My vibrations and jerks seem to be on a spectrum that also include electrical sensations, RLS, and overall burning sensations -- depending on how bad the day is and what muscle groups have been used. Duloxetine, gabapentin, and cannabis have been helpful. Haven't looked into zanaflex, but I do use baclofen on bad days. Also TENS, massage, stretching, and inversion/traction.
 

tearydawn

Active Member
[
[My neurologist never used the term myokimia -- just peripheral, small-fiber, and autonomic neuropathies. My vibrations and jerks seem to be on a spectrum that also include electrical sensations, RLS, and overall burning sensations -- depending on how bad the day is and what muscle groups have been used. Duloxetine, gabapentin, and cannabis have been helpful. Haven't looked into zanaflex, but I do use baclofen on bad days. Also TENS, massage, stretching, and inversion/traction.[/QUOTE]

It's called EMG, the needle test. I'm hoping to have one. Did it hurt? What was your diagnosis or are they blaming CFS? I don't think I have RLS but I have the burning sensations. My right breast was on fire for almost a year. I've had it behind my knees, hot feelings in one finger, one spot on my chest, ect. I just don't want to lump everything under CFS. I can't take Gabapentin or baclofen. Elavil I don't react to and cannabis is illegal here. Oxy has helped tremendously, but for how long, we'll see. Massage is also helpful to me, or maybe it just feels good, light touch only though.
 

Paw

Well-Known Member
It's called EMG, the needle test. I'm hoping to have one. Did it hurt?
Yes, the EMG, which was definitely one of the most unpleasant procedures I've been through. Maybe my neurologist was taking his time, though, doing extra probing, because, he said, I had a bunch of weird asymmetries. After ruling out the low-hanging potential causes (like diabetes) he declared all my issues were caused by the neuropathies. (He's one that believes FM is actually small-fiber neuropathy.)

This was early in my exploration, so I don't rely on his diagnosis exclusively, but the documentation has been helpful.
 

tearydawn

Active Member
I know a lot of people in my GWI group who most have fibromyalgia are also finding out they have small-fiber neuropathy. So he might be on to something. I'm terrified of needles and have been hesitant to have the EMG done but since my symptoms have increased after going away once put on Elavil, I figured better to go through it and be taken seriously than to continually have doctors look at me as if it's all in my head. I don't have diabetes or any of the other autoimmune diseases even though my symptoms are also autoimmune in nature. I think CFS must be an autoimmune disease.

Thanks again for your insight. Every little bit helps!
 

Paw

Well-Known Member
Good luck. I've heard that not everyone's EMGs are so bad. Me, I think partly I just wasn't expecting the sensations to be so deep and acute. Took me by surprise.

But I'm glad I did it, mostly, as you point out, because it helps other physicians latch onto something. Also the asymmetrical patterns he found help me better manage some of my symptoms (e.g. my left side tends to be numb, while my right side tends to be in pain -- which can cause problematic asymmetrical exercise if I'm not careful).

As for all my other symptoms, including everything under the CFS heading, it's just been trial and error, as it is for everyone -- but at least the diagnoses make it easier to get docs to allow me to try things.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Good luck. I've heard that not everyone's EMGs are so bad. Me, I think partly I just wasn't expecting the sensations to be so deep and acute. Took me by surprise.

But I'm glad I did it, mostly, as you point out, because it helps other physicians latch onto something. Also the asymmetrical patterns he found help me better manage some of my symptoms (e.g. my left side tends to be numb, while my right side tends to be in pain -- which can cause problematic asymmetrical exercise if I'm not careful).

As for all my other symptoms, including everything under the CFS heading, it's just been trial and error, as it is for everyone -- but at least the diagnoses make it easier to get docs to allow me to try things.
I had an EMG done - the doctor actually flinched as I flinched. He said something like barbaric test (lol) but while it is painful it is over pretty quickly and I had no lingering pain.

Those muscle tremors/ fasiculations do not sound like fun...I've had them before but they were quite local - in my lower legs I was having numbness in my left foot, left hand and nose and eye problems and then, thankfully, it just went away.
 

tearydawn

Active Member
I had an EMG done - the doctor actually flinched as I flinched. He said something like barbaric test (lol) but while it is painful it is over pretty quickly and I had no lingering pain.

Those muscle tremors/ fasiculations do not sound like fun...I've had them before but they were quite local - in my lower legs I was having numbness in my left foot, left hand and nose and eye problems and then, thankfully, it just went away.
Gah! I hate needles something fierce! I dread the procedure but am finally at the point of just wanting to figure this all out and prove it's not all in my head!

The tremors/fasciculations are quite bothersome. When they were at their worse, there was clinical weakness noted which has since improved. Mine are still here, still bothersome! My numbness in my leg gradually went away and I only have a slight lack of sensation there. My hands haven't had the numbness is quite a while which is good. We do experience some very odd stuff! Nice to find others who go through the same!
 

Khorwitz1

New Member
I think CFS/ME clearly incorporates neurological problems - I also take mestinon to help with muscle/nerve junction problems. I have had EMGs, They are not fun, but bearable. The Myokimia is separate from nerve/muscle junction issues.
 

Zsazsa

New Member
My husband had fasciculations from taking a small dose of magnesium malate, so I think it was from the salicylates in it.
 

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