can't sit still; involuntary movements worse

Discussion in 'Fibromyalgia Main Forum' started by Chilene, Aug 23, 2008.

  1. Chilene

    Chilene New Member

    oh, geez, something new and different with this dd, sort of!

    i was thinking that my recent racing heart/brain might have to do with my (more than usual) not being able to sit still, but after reading a few older posts on this, i'm wondering if i'm twitching/can't sit still/tremoring more because i've plain been DOING more lately. tired muscles related, i wonder? (true, i used to get twitching from tired calves and forearms... but i never found myself putting my left hand on my face or biting down on my fingers as some sort of weird support, before).

    lately, i find myself constantly doing this. thought maybe i was unconsciously doing this to support my tired head... but am realizing, i can't still for long without moving (often the left)hand near my head/mouth.

    also doing these new things where i grimace just to stretch my facial/mouth area... as well as squint my eyes involuntarily (again, i never did this before and had this dd 13 years).

    vision is getting worse, too but that could be for many reasons.

    i also feel alot of low level teeth "chattering"/facial jumpy muscles/eyes. (some of that i had in the past)

    i'm trying not to freak out. this all is exhausting me. i'm sure coffee doesn't help (don't all yell at me at once!)... but coffee IS my only "med" and DOES help me accomplish things that i couldn't without it--one strong cup a day). also, i've always been drinking some coffee and this without thes movements happening before.(also allergic to almost ALL meds, herbs, vitamins, homeopathy nowdays). too bad, as i wish i could just knock myself out with a few beers when i feel like this.

    oh, and i'm wondering if a recent bout of (pinched nerve?)down my right arm (i have herniated discs C-5 to C-7)... might also have to do with all of this...?...

    it's been a month at least and i'm exhausted from it all!

    i'll calm down if i know that it i'll be able to calm it down and stop it at some point!

    anyone else?

    [This Message was Edited on 08/23/2008]
    [This Message was Edited on 08/23/2008]
  2. glenpr

    glenpr New Member

    what meds are you on?
    Stimulants can cause some of these symptoms.
    love glen
  3. Chilene

    Chilene New Member

    i'm on ZERO meds. allergic to nearly every medication on the planet.

    i am still drinking a strong cup of coffee each day, but that never caused any of this before...


    thanks for the thought, though!

  4. mujuer

    mujuer New Member

    I would definetely call your Dr. Something sounds out of whack. He might send you to a neurologist. P
  5. Chilene

    Chilene New Member

    do you mean that something is out of whack since i'm so allergic?... or because of the restless body?

    i think it's sort of common for people with CFS to have severe allergies, though granted mine seem worse than most. also sounds like the restless leg/body movements are somewhat common for folks with fibro i'm now learning... it's just that many of those folks can take meds for it (i can't).

    doctor? helpful? i wish. most of them just say "well, if you can't take medication then i don't know what to tell you". a few have suggested allergy "desensitization". but the last time i went through all that pricking, i passed out (years ago, but passing out is pretty normal when they stick things in me. can't help it. not psychological. it's called a vaso-vago reaction.) and i don't really want to "see what happens" as i take something that normally makes my throat close up...

    went to a TON of neurologists 13 years ago when it was suspected that i had MS. at least at that time, most neurologists were even less helpful (or understanding of CFS/fibro) than my MD... all they knew how to do was send me for tests or prescribe drugs and send me away.

    spose i could try again... but i learn more from these boards and my own online research than i learn from most doctors, unfortunately. i do however, know i should check in with docs once in awhile (for blood tests, MRIs, etc.) when you can't take meds, they don't seem to understand any other way of healing the whole body... alternative medicine is good for that, but so expensive when you're on disability and nothing alternative is covered...

    thanks for your concern!;)

  6. gapsych

    gapsych New Member

    I am not a doctor but this does not sound like FM. I would get to a doctor ASAP if nothing else but to relieve your mind.

    Can you control the grimaces? Coffee can make you jittery but I do not think it can give you these symptoms.

    Keep us updated

    [This Message was Edited on 08/29/2008]
  7. mujuer

    mujuer New Member

    those facial spasms are concerning as well as the biting. I have rls all over also but not in my face. I hope you get in to see a Dr. soon. P
  8. Chilene

    Chilene New Member

    oh dear, i think i made it seem worse than it was (plus, that only went on for a few days)... i haven't noticed all this in about a week.


    yes, i think i can control most of it... i just felt "the need" to stretch those facial muscles a lot of times (sometimes in a period of maybe 10 minutes or so, a few times...)... and then i wouldn't think about it again for hours (and i might find myself squinting alot or stretching my mouth alot).


    i don't think i mentioned any biting of sorts... (though my memory is bad, too)!

    if any of this happens again for any length of time, i'll go to some docs!;)

    thanks all for your concern!


    [This Message was Edited on 08/29/2008]
  9. gapsych

    gapsych New Member

    I hate to harp on this and do not mean to be disrespectful.

    This "need" to stretch your mouth and squinting is also of concern. It sounds like a tic which is neurological but I am not a doctor.

    If it has been thirteen years since seeing a neurologist, this might be a good time to be rechecked.

    Please keep us updated.


    [This Message was Edited on 08/29/2008]
  10. ellikers

    ellikers New Member

    What you are experiencing could be a specific expression of anxiety or obsessive compulsive disorder (feeling that you HAVE to make a certain body movement is a sign).

    This sounds quite different that usual FM symptoms and I'm really thinking it's neurological or psychological (that DOES NOT mean that you're making it up, or that it's "just in your head" it's very real). I know that the people you've seen weren't helpful before, have they heard of this recent development though?

    It sounds like your body is processing stimulus differently than normal ... or it could be a developing because you are stressed (who isn't with these illnesses?) and your body is finding a funky way of showing it.

    I have a background in undergrad psych and have been around a lot of medical and psychologically trained people so that's where this info is coming from.

    I wish you luck! Might be time to try those damn doctors or try a new one (I know that's frustrating, but you deserve quality help!) I wish I had a magic answer.
  11. Chilene

    Chilene New Member

    as i mentioned... i haven't been experiencing any of that in a week (and it was only a few days i noticed it on and off).

    been feeling pretty good, actually.

    nope, don't think it was anxiety (though the racing heart that i commonly get--common to many of us--might have been producing some of this... i commonly get rapid heart rate when i'm in a flare, or who-knows-why...).

    also, when i noticed this, it was maybe for only 2-3 times in a half an hour. only twice a day, for a day or two. it just felt like that uncomfortbleness we get with fibro when we're stuck on a plane and need to stretch our legs. but i just needed to relax my eye muscles, i think, by squinting/squeezing them a little. but since it MIGHT have been SLIGTLY involuntary... i WILL keep watch for it happening again.

    i'll keep an open mind about seeing a neurologist if this crops up again! i'm still planning on trying a Holter monitor soon. thanks, all!

    i'll check back soon!

    [This Message was Edited on 08/30/2008]
  12. steach

    steach Member

    I'm not a doctor and can only give a few opinions.

    In a way, it sounds like involuntary movements like restless leg syndrome. I get this especially after I have been on my feet for a while and then sit. I take Klonopin at night so that I can sleep or I'd be up all night kicking my legs around.

    If this is something that you are doing but can not control, it sounds a bit like Tourette Syndrome, an over-abundance of certain chemicals in the brain which cause involuntary movement, vocalizations, etc.

    If you feel compelled to make these movements, and choose to do them, it could be stress/anxiety which may be obsessive-compulsive.

    If making these movements relieves pain, twitches, aching muscles, then you may have learned a coping skill to deal with what is going on with your body to get relief.

    Talk with your doc about seeing a neurologist and ask to have a CT and MRI; a PET scan may also be very helpful. A thourough eval would give the doc more info about what is happening.

    Have you ever tried meds in pediatric doses?


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