Jerking movements

[Gknee]

I have been experiencing jerking movements and need some info. The movements are not the muscle twitches where you can see a muscle twitting under your skin. It is not the jerks you feel as you fall asleep ethier. The best way I can describe it is you body jumping or jerking. It usally happens when I am feeling at my worst. I feel it when I am fully awake. My entire shoulder will contract lifting it off the bed or couch. I have even done sit-ups with stomach contractions. I will get a few within a couple of minutes. Then they stop and will come back later. They don't hurt but they are a little frightening. They are more bothersome than anything else. Does anyone have these?

 

[Googsta]

Are you on any meds? This can be a potential side effect.

My husband who does not have ME/CFS recenty tapered off Tramadol SR, he'd been having these violent 'tics' for the past two years. He's arms would suddenly shoot out in front of him or his head would jerk to one side, he even had verbal tics with it too which we found very embarassing.
He's only had one since he tapered off completely. Magnesium may have also helped though we aren't certain of that.

If it's not med or supplement related, you should see a Neurologist for an EEG to rule out Epilepsy.

 

[Mya Symons]

I have been experiencing jerking movements and need some info. The movements are not the muscle twitches where you can see a muscle twitting under your skin. It is not the jerks you feel as you fall asleep ethier. The best way I can describe it is you body jumping or jerking. It usally happens when I am feeling at my worst. I feel it when I am fully awake. My entire shoulder will contract lifting it off the bed or couch. I have even done sit-ups with stomach contractions. I will get a few within a couple of minutes. Then they stop and will come back later. They don't hurt but they are a little frightening. They are more bothersome than anything else. Does anyone have these?

I get these sometimes along with the twitching. Mine are when an entire part of my body moves by itself. For example, I have had my leg jerk or kick out or my arm shoot up. My neck also snaps back. Sometimes it is for no reason and other times I will be thinking of doing something that involves movement later or some movement I made in the past and a limb will move before I make it move. For example, once I was at home thinking that I should have raised my hand in class and asked a question and my arm shot up like it would if I were going to raise my hand to ask that question in class. I did not try to do this. I don't know if that makes sense. My brain can't explain well right now.

I have told my doctor, but all she ever says is, "That doesn't sound like Fibromyalgia." However, nothing is ever done about it. I doubt she believes me.

Anyway, if your lucky enough to have a doctor who believes you, you should definitely mention this. Maybe they can do some nerve testing and figure out what is going on.

One more I thought of - my feet often twist in towards the center of my body by themselves. It is not a little jerk, it is a large twist. None of the other movements hurt, but this one does. I can't get them to twist that far normally.

 

[Countrygirl]

=Gknee;256867]I have been experiencing jerking movements and need some info. The movements are not the muscle twitches where you can see a muscle twitting under your skin. It is not the jerks you feel as you fall asleep ethier. The best way I can describe it is you body jumping or jerking. It usally happens when I am feeling at my worst. I feel it when I am fully awake. My entire shoulder will contract lifting it off the bed or couch. I have even done sit-ups with stomach contractions. I will get a few within a couple of minutes. Then they stop and will come back later. They don't hurt but they are a little frightening. They are more bothersome than anything else. Does anyone have these

Yes, I had these when severely ill. When my muscles weren't rippling of their own accord and doing their own thing, my body would jump so much that I would nearly end on the floor at times. The woman across from me in the opposite bed had cancer and , following her chemotherapy, had the same problem as I, and we would smile at each other as we jumped , flayed out and our bodies would strike out for independence regardless of our conscious will. Bacofen helped me eventually, but i found it correlated with the severity of the illness in my case.

I hope this added extra moves on and leaves you alone soon, Gknee, as it is rather irritating.

I would be interested to know why we have St Vitus Dance-ME style.


C.G.

 

[taniaaust1]

I had that bad when I had tons of neuro symptoms going on. I wasnt on any drugs at the time so it was all just part of the ME.

Mine was but wasnt like what Mya described. I didnt have it happening to any thoughts I as thinking. It would happen to me spontanously. It could happen in one part of my body or with like my whole body doing a big jerk.

I once almost ended up with a blood nose as I got such an intense single jerk that I was thrown from a on floor crossed legged sitting position to face first into the floor. Another time I got thrown by one onto the floor from my lounge chair.

With the stronger ones.. with those it got to the point where a noise would come out of my mouth with them.. like if someone had kicked me in the gut and all the wind from me rushing past my lips suddenly or something. It used to be very embarrassing if I was out shopping and one happened as everyone would hear the sudden sound and turn to look at me.

I think it all has something to do with neuroexcitability in ME. I also found these could come in worst post exertionally.. part of like P.E.N.E. if ones ME chooses to manifest in this way.

I also ended up developing constant tremors for a while (was mistaken as having parkison's disease by some nurses at the hospital). and also develolping what was ended up being diagnosed as rythmic myoclonus which neurologists diagnosed after a GP freaked out on seeing all the neuro symptoms and had me ambulanced to the big hospital in the city.

All these neuro issues were all different neuro things.. different manifestations of the ME I was experiencing (the hospital neurologists said they'd never seen anything like the symptoms I had all together and that nothing they knew about could explain it). It was like a developed a whole new ME symptom complex there for a while

Lost all my balance (couldnt turn a corner without falling down), also got hyperreflexia and unequal and not responding right pupils at times too.. while I was in that very neuro symptom complex.

How many different neuro symptoms I was exhibiting at the time all depended on how bad my BP was at the time (thou I wasnt bedridden..so wasnt bad as my ME gets but just had different severe symptoms to what Id had before for quite a few months).

After that.. the neuro stuff settled as my ME got a little better but then POTS and BP issues then became a severe issue for me since then.. so I wonder if my system was damaged with the neuro things I used to get.

Good thing thou is.. thou those the neuro things can get very bad (it got to the point I had neuro issues constantly on show, if it wasnt of one kind, it was another kind) .. they seem to be able to heal and one can stop getting them. I really thought there for a while that I had permanent damage and doctors had not any idea of the whys of it.

As soon as they realised my symptoms didnt fit anything they knew.. they kicked me out of hospital (my case too hard.. they hate severe ME cases) .. agreeing it must be ME caused when they couldnt find anything else which fit the symptom pattern I had. At least I had it recorded on my records I had tremors and rhythmic myoclonus so they didnt think it was in my head.

 

[Valentijn]

It could be tetany, possibly caused by low magnesium or calcium, or high potassium.

 

[xks201]

This is perhaps the most consistent/salient feature of my CFS. But more importantly, I had these excitation tics in my hands and whatnot even BEFORE I had CFS. In fact I had them as a young child. When I would play video games I would get so excited my hands would start shaking temporarily. And now when I play video games it still will happen especially if I am feeling very tired. Not even clonazepam will stop them. Perhaps an SSRI will stop them. But SSRIs knock me out. I guess they would be great if they did not do that. lol

 

[justy]

Hi Gknee - i have EXACTLY the same problem - not so bad when i feel a bit better - worsening as i worsen. Magnesium helped a little bit - but not much. I eventually made an involuntary noise with it too (embarrasing) I also have it as major flinging/jerking but now also as a large tic or twitch of the whole upper body and stomach. If im out and knackered i sit in my wheelchair and tic and jump a few times, then it normally settles. Ive also just developed unpleasant spastic kind of movements in my feet at night (not RLS) It can go on for hours with my feet flexing and contracting. Beofre all of these different things happen i get a strange crawling type feeling in my body and then it happens.

I found this interesting: http://www.wemove.org/pdys/pdys_cc.html

I'm presuming this is a neurological symptom - i havent had a brain scan so im not sure if they would find anything here, but i presume as many with M.E have brain lesions (similar to MS) then that could be the case here.
Take care, Justy.

 

[taniaaust1]

Ive also just developed unpleasant spastic kind of movements in my feet at night (not RLS) It can go on for hours with my feet flexing and contracting.

Sounds like the "rhythmic myocolonus" I got diagnosed with having, but in your feet. (I used to get it like all over my body).

The site you provided link too explains myolconus as

." Positive myoclonus results in contraction of a muscle or multiple muscles.

but also says there is shocks.

I actualy didnt feel shocks happening at the same time as I was getting what they said was rhythmic mycolonus (with muscles contacting constantly on and off for ages). Using a muscle could too set off that kind of after response.

I was getting shocks but it was at a different time eg other days and in different areas, seemingly unrelated to those rhythmatic contractions.

I'm presuming this is a neurological symptom - i havent had a brain scan so im not sure if they would find anything here, but i presume as many with M.E have brain lesions (similar to MS) then that could be the case here.
Take care, Justy.

I was shocked when they said my MRI was normal as I couldnt see how it could of been at the time due to all the neuro issues I had going on. I would of loved to have gotten a good ME specialist thou to see it as I wonder if they would of noticed something.

I think the ones who check our scans.. Ive seen before, they do ignore abnormalities if they dont know what they are or what to be looking for.

I really wish I had a web cam and good computer back then when I had all that, it would of been good to have filmed it all so I could show others the types of symptoms I had, so we could all discuss ME symptoms better.