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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Involuntary movements question....

Discussion in 'General Symptoms' started by jules78, Mar 4, 2014.

  1. jules78

    jules78

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    Hiya I don't quite know how to describe this, but just wondered if anyone has their head shake involuntary? It can move side to side or just jerk about. I get jolt and twitch like movements in my arms , legs, hands etc sometimes they go through me like a Mexican wave lol. I find I have them more when I'm laid still and relaxed, although this may be just because I'm still and therefore notice them more. And besides those the one which apart from the head one also seems the worst is my right wrist/hand .....which shakes and involuntarily twists by itself. I'm just intrigued if anyone else has had this happen, as I have not had this illness long so am still learning about it. Kind regards, Julie :)
     
    taniaaust1 likes this.
  2. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    Myoclonus? A friend had them.
     
  3. jules78

    jules78

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    Thank you will look that up :) this is all so new to me x
     
  4. jules78

    jules78

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    Thanks minkeygirl that definitely describes what I'm feeling, so will mention it to my doctor when I see him Friday. They have sometimes caused me to bite my lip or tongue which bloomin hurts, when I've had a jolt in my head x
     
    minkeygirl likes this.
  5. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    Just one thing I thought of. Other's will chime in I'm sure.
     
  6. jules78

    jules78

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    Thank you...... I'm just glad to have a starting point and to know I'm not going crazy lol x
     
  7. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I didn't say you weren't crazy! Just that it might be something!:p
     
  8. Martial

    Martial Senior Member

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    THis is a big issue for me with lyme disease, actually I had restless leg syndrome for a few years and never figured out the source till I was overwhelmed with all this other stuff now..

    Maybe worth looking into possible infection with an LLMD, this is pretty common of lyme as the CNS is compromised with infection and brings out MS type symptoms for a lot of people.
     
  9. jules78

    jules78

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    Hahaha you have a point there minkeygirl! :D
     
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  10. jules78

    jules78

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    Thanks Martial I'll get that looked into. I did question at one point if it could be Lyme disease, as I remember having this terrible big bite on my leg in the summer just before I fell ill. But I kind of dismissed it as my bite didn't look like the pictures of the ones I'd seen on the net :confused:
     
  11. xchocoholic

    xchocoholic Senior Member

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    I had this go on for 2 hours straight once. Luckily I was already at my docs and they called 911.

    I'd been having either tia's or seizures for several weeks prior which is why I was at my docs.

    I think the ER doc dx it as a tonic clonic.

    I take .125 - .5 mg of Klonopin now if I'm feeling pre-seizure. For me, it's like that feeling I get from too much coffee but it feels deeper. If that makes sense. Lol.

    I have nocturnal myoclonus and this isn't the same. Nm causes rapid jerks when falling asleep. This 2 hour tc? didn't involve jerks just movement.

    What a great video that would've made, eh? Lol.

    Tc ... x
     
  12. jules78

    jules78

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    Oh wow two hours. You must have been so tired after?? I can't even begin to imagine how uncomfortable that must have been x
     
  13. AndyPandy

    AndyPandy Making the most of it

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    Hi @jules78. I was recently reading about serotonin syndrome and thought of you. Apparently it causes involuntary jerking amongst other things and can be quite serious. It can be triggered by antidepressants which I recall you have been taking. You might want to check this out. I read about this on about.com's site regarding CFS and FMS. Best wishes.
     
  14. jules78

    jules78

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    Hiya @AndyPandy thank you I will look that up. However I've been taking the sertraline now since March 2013 without any problems before. :)
     
  15. AndyPandy

    AndyPandy Making the most of it

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    From what I recall, some people had problems when they started taking generic versions of antidepressants after having no problems with the brand names. Apparently the syndrome can also occur with herbal supplements.
     
  16. jules78

    jules78

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    @AndyPandy.
    Sertraline is the only thing i've taken. I've never tried any herbal supplements or anything like that.
     
  17. taniaaust1

    taniaaust1

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    YES!! You are I think the first person Ive heard mention that just like I was getting it at one point. My head was shaking very hard and fast side like as being turned side to side but faster then I can do this myself at will The worst incident I had of this is when on a rare occassion I was taken out and was in the backseat and the wind from the front windows hit me in the face and it set off this reaction for about a whole minute, I thought I was going to end up with some kind of side on whiplash out of this as there was a lot force behind this (they had to wind the windows up and stop the wind blowing on my face trigger before I went ok again)

    I had that during a point in which I went throu a few week period of neurological systems golore. including I was getting myclonus, huge jerks (one actually threw me from a sitting position onto my face) and tremors like parkinsons disease at the time (I tremored constantly for 3 weeks straight non step during a bad crash). A doctor who saw me had me ambulanced to hospital as he couldnt believe ME/CFS would cause someone to have such major neurolgical reactions. At the time my Rombergs Test was so bad that the neurologist said he'd never seen anyone go down like I did (I went down instantly when I shut my eyes). Incredibly I got kicked out of hospital the next day (collapsed on the floor of the waiting room while waiting to be picked up) due to them saying that they do not treat "chronic health conditions" in hospital and that was something for my doctor to do (that was after I'd said to the neurologist who was confused about my whole state that i thought it was my ME).

    Due to being on a slow downhill run currently due to being forced to regularly over do it (state disability service is being discriminatory and want provide the support Im needing). Im back to getting incidences of jerking and spasms, I had like a seizure only the other day after I overdid it just from cooking the easiest meal I could of cooked and being taken to visit someone for an hour in the same day (I was actually wasnt even sitting there and spent the time laying on their lounge but still badly crashed and ended up collapsed (after the jerking/spasming incident, on their floor).

    I do believe I do have ME (due to having so many of the testable ME abnormalities) ..but I also wonder if I have lyme thou it didnt come up on the test, I recently found out that I have a rare gene mutation which makes me more susceptable to it .. (and I probably have a mast cell disorder too).
     
    Last edited: Mar 28, 2014

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