I REALLY Need some advice or common experinces, PLEASE

Discussion in 'Fibromyalgia Main Forum' started by horsegal, May 23, 2003.

  1. horsegal

    horsegal New Member

    Hello everyone!

    I've been pretty quiet lately, just hanging around and reading posts. Well, I've starting getting muscle twitches and body "jerks". Kinda like when you start to fall asleep and then jerk...only I'm wide awake. Sometimes it's a muscle group, sometimes it feels like a single muscle, and sometimes I have a body "jerk". I can't explain it any other way. It does have me pretty worried. Seems as though new things are starting to happen, and I don't like that.

    Appreciate anything ..
    [This Message was Edited on 05/23/2003]
  2. horsegal

    horsegal New Member

    Sorry, but I couldn't find my post after I posted it. I'm also overly anxious to hear from all you smart people out there!
  3. Cactuslil

    Cactuslil New Member

    Man, don't really know where to start but to offer two possibles....both of which were my answer.

    First, I normally ran a rapid pulse w/low blood pressure, including hypostatic b/p. Plus I devoloped a dystonia wherein my hands visibly trembled, various muscle groups would spasm, et al.

    That was about 5-years ago. My then neuro put me on the beta blocker inderal which strengthened the tenor of the heart thereby raising blood pressure and lowering the rapid heartbeat (tachycardia). My heart was "beating" itself to death and still was inefficient. I started at 20mg. twice a day; still at that dose....

    Interestingly it also relieved the dystonia.

    About a year ago the dystonia went wild! I was (mis) diagnosed w/Parkinson's when a friend had a reaction to a simple SSRI; she had a rare side effect called Tardive's Dyskinesia. She quit the SSRI immediately and all was well.

    Now, I have been on SSRI's since the advent of Prozac. When I heard this, I investigated Seratonin Syndrome. I quit taking the SSRI immediately (which I would not just recomment without dr.'s orders) without dr. orders and all the dystonia (tremors et al.) were gone by the next morning!

    I now will not take any SSRI. My long standing fight against clinical depression and anxiety (dysthymia w/major depressive episodes) disorders must be treated with tricyclids and anxiety meds.

    I hope this helps a little. I can remember the frustration when all of these things started happening to me and now eight years into FMS and collagen disease I still fear as new things crop up. Lil'
  4. Kathryn

    Kathryn New Member

    I find that I don't jerk as frequently since I started on Neurontin last fall. Whether that had anything to do with it or not, I don't know. I think the (myoclonal?????)jerking is mentioned in Devin Starlanyl's books. I'm actually pretty sure it is, I just can't remember which one. Since my SSDI was approved, I have been concentrating on getting my house ready to sell. I think what I would do, is give a druggist a complete list of meds that you take, and ask if that is a recognized side effect. That would give you a good start. They know far more about drugs than ANY doctor. Let us know what you learn. Happy Trails,
  5. Mikie

    Mikie Moderator

    I don't jerk at night in bed and I also don't have the muscle twiches and spasms.

    Love, Mikie
  6. Princessraye

    Princessraye New Member

    I don't know if that is what you are referring to but it sort of sounds like my Restless Leg Syndrome (RLS)
    Do a search on google something like symptoms of restless leg syndrome. It will also list treatments. I know the name only includes legs but I get it in my buttocks, legs, arms and back. This happens when I am awake and asleep but only when I lay down.
  7. horsegal

    horsegal New Member

    Thanks all of you for replying. I take a "cousin" to neurontin, trileptal. That has been my one saving med., but just to know that someone else has at least experienced something like this makes me a little more at east. I also think I'll talk to my "understanding" doc next week. It was just something new and a bit un-nerving....I have a big barrel race tomorrow; don't want to jerk-off on a turn ( pardon the pun)! I just hope it doesn't screw with my balance anymore than the DD already has.

    Thanks again,

  8. Shirl

    Shirl New Member

    Had the same problem, it was RLS, and then the whole body jerks just when I was falling asleep.

    I take Pro Energy (Malic Acid and Magnesium Glycinate) and ZMA (zinc, magnesium and vitamin B-6), between the two supplements I do not have this problem at all anymore.
    You can read more about both products on the link below;


    Most of FM/CFS patients are deficient in magnesium, and it is a natural tranquilizer, and heals muscles while we sleep.

    I have been fine with the jerks for a year now.

    Shalom, Shirl
  9. starstella

    starstella New Member

    twitching, body jerks that you described. Then it got really bad because i would be wakened at night by rapid twitching of a hand, or arm, or sometimes my head. Scary stuff. I'm on a very low dose of klonopin now which has brought these symptoms to a minimum. My doc said it was sleep myoclonus.