Fasciculations

[gjensen]

(Did I even spell that right?)

Does anyone here get these? Mine vary from mild and throughout to intensely painful and localized. Often it is on one side. Everyday and every week is different. Occasionally it seams to be triggered by being upright, and other times there seams to be no connection.

[dkd]

I just call them muscle twitches . I do have them somewhere everyday, but not for long. Usually eyelid, but can be in other parts of the body-arms, legs, abdomen, one that's really weird is in my groin area

Mine have never been painful, just annoying. I had a twitch in my shoulder this morning when I woke up, so it's not related to being upright specifically. I looked on youtube once and saw a few videos in which the muscle was twitching very strongly. Mine aren't that bad. I don't think anyone else could see them, I just feel it. Sometimes they seem like they're really deep in the muscle where it wouldn't be visible on the surface of my skin. I mentioned it to a neurologist once and he just said 'a lot of people have that'

[gjensen]

I did not make too much of them initially. They are getting pretty intense though. You can see some of them through the clothing. Occasionally they can move the limb. They are inside and out to.

Like I said, initially, I dismissed them. I am starting to think there is something to them now.

I get a painful one in my esophagus that can startle me. It takes me a second to decide if it is my heart or not. LOL.

[Raisin]

I have muscles in my back that twitch fairly violently when i relax. I think this is a myoclonic thing? Interestingly, they started going crazy also when on the TTT. I keep wondering what is going on with that pathway?! Lol

[castronovo112587]

I've had the esophagus one though not as frequent now and your right it is hard to tell if its your heart or not. I get them usually on days I feel worse or stressed. Like did said mine don't usually hurt. They are more of just a discomfort. Only if it happens pretty violently may it hurt for a second or if its in my chest. Not sure what its from have you been checked for anemia and is your potassium ok?

[gjensen]

Thank you Rosy, and Raisin.

Rosy, I see no connection to stress for me. Early when they were mild, I chalked them up to stress or something not worth worrying about. No anemia, and potassium is ok right now.

Thinking about it, there has been a variety of triggers. None consistently. I mentioned the orthostatic triggers, but that is always the same set of twitching. My right upper and lower arm and the right chest. That comes with a pain in the middle back. Between the lower shoulder blades.

One trigger was a particular MRI. They went crazy all over the place. From my head to my toes. An MRI afterwards did not trigger them at all.

dkd, my neurologist has not commented on them at all. I was reading a couple of his reports this weekend. He mentions them, with no explanation. He did mention that I was a complicated patient. LOL.

[bellgirl]

You could ask your neurologist to schedule you for an EMG, which tests the muscles and nerves, but the test is uncomfortable. My husband had some twitching, which was severe, but his was high potassium; they did an EKG and EMG, and both were negative. It could be his kidneys. He needs to be rechecked. I sometimes get those jolts in my limbs, and electric shock type nerve pains, and I used to be very tremulous. Since I'm on my meds, though, it doesn't happen as often. Today I was singing a very challenging song in choir at church, that left me shaking. That does still happen on occasion. My heart aches today, too! I'm not doing well, because I over did it last week. We are in the middle of a bathroom remodel and buying lots of items. I also have buzzing in my head, which hasn't happened in a while. I just think all of it is Dysautonomia.

[yogini]

If you are dehydrated or have low blood flow, this could be a symptom. I would also check the side effects of any meds you are taking.

[gjensen]

Bellgirl. I had an emg early into this and it was supposed to be normal. I did not have them back then.

Ironicly, after posting this, I have only had a few minor small ones. That is how all of this goes though.

I will have to look into this kidney thing. Never thought of issues outside of neurological. I should not be dehydrated as much water as I do drink, and my potassium is normal right now

How could low blood flow cause it? I will have to look into that. This illness never quits teaching.

[TCP]

I started the muscle twitching and popping sensations back in the 1980's as part of the onset of ME and they were worse when I had been walking. My legs would fizz and make popping sensations for hours afterwards. Over the years I got used to them and with the onset of neuropathic pain, I noticed them less as I haven't walked so much. I do get various weird nerve sensations that can be stabbing, burning, freezing and irritating. This can be mild or painful and can either be fleeting or lasting hours or days. I get the jerking problems but not as much as back in 2007 when I was twitching and jerking all over day and night.

I find keeping my body as relaxed as possible helps...

[gjensen]

I saw that they were associated with ME. I am still having a milder spell. Every bit of all of this is like that. I think that I am heading back into a bad spell, and I suspect they will pick up in frequency and intensity.

Did any lead into nerve pain for you? Where one was acting up the most and was the most intense, now hurts a great deal. I do not know whether or not I should assume a connection.

It feels like there is an active process going on. I am always experiencing something. It is very very rare to not be having something going on. Weird stuff this stuff is.