Medical question concerning involuntary movements as.......

Discussion in 'Fibromyalgia Main Forum' started by truthseeker67, Apr 22, 2003.

  1. truthseeker67

    truthseeker67 New Member

    one falls asleep or during sleep which may disrupt your rest? For example, your arms or legs will jerk for no apparent reason.

    Is this a common symptom of FM/CFS?

    Can this be a symptom of MS, Lupus, or Lyme?

    Why does it seem to happen when you lay down, does it have something to do with putting more pressure on the whole nervous system (spinal cord)?

    Does it have to do with your body trying to unwind, but our nervous system is somehow short-circuited from the FM/CFS?

    I usually research these things myself, but I am lacking in time and energy. I thank you ahead of time for any replies!

    Blessings,
    Truth

  2. kmelodyg

    kmelodyg New Member

    Truth,

    First of all, welcome to the board!! I am not sure the exact reason that we have involuntary jumpiness. But I wanted you to know that you are not the only one. It happens to me every night when I am falling asleep. Usually it's just my legs. I'm sure that someone else will know why this happens to us. But you have some good theories! I have heard many otehr fibro sufferers describing this problem too. Again, welcome!!

    Hugs,
    Kathryn
  3. truthseeker67

    truthseeker67 New Member

    *Could Zoloft (only 50mg), caffiene (1-sometimes 2 cups of coffee), Tylenol, Aleeve, or any other medications add to this problem of involuntary movements?

    Thanks again for your replies!

    Kathryn (love your name & the way you spell it),

    Thank you for the warm welcome! Yes, it does seem to me that in one of the books &/or websites that I have visited that others with FM/CFS have this symptom as well. I just wonder if it is common and what may actually cause this?

    Since your symtoms usually occur in your legs, then I would guess that most of your problems are in the lower back as opposed to upper? My pain is equal in the upper, mid,and lower back, perhaps affecting twitches in both the legs and arms? Am I correct or doesn't this correlate?

    Thanks for your reply!

    Blessings to you Kathryn and all,
    Truth
    [This Message was Edited on 04/22/2003]
  4. jlbeck13

    jlbeck13 New Member

    I started out with an injury to my neck which required 6 screws and a titainium plate be put in to stablize ti. I twitch from head to toe, including sometimes even having my head thrust itself backwards. They all seem to disappear as quickly as they arrive. they take place 24/7 but it is definitely a part of the nerve damage and now the FMS.
    I have been tested for everything else and am fine.
    I also get alot of pain in the backs of my leggs and hips if I sit more than an hour or so.....does anyone know of any excercise can do to help with that?
  5. Ancient1

    Ancient1 New Member

    Since 1990 I too have dealt with what they prefer to call restless leg syndrome, although it now occurs throughout all muscles in my body. It was so bad I would unconsciously beat my husband up while we slept. Good thing he has quick reflexes. I couldn't stop the jerking once it got going. To make it short. I now take tizanidine 4mg. four times a day with much improvement. I still have days I try to over do and I will always pay with spasms as a consequence. It helps to rest/relax ten minutes every hour too. It gives your system time to dispell energy rather than save it all up for bedtime. LOL Susan
  6. klutzo

    klutzo New Member

    Yes, it sounds like RLS, which can be made much worse by some antidepressants. Be sure and tell your doc about this. There are drugs that will help you sleep and help this at the same time.
    KLutzo
  7. Tibbiecow

    Tibbiecow New Member

    Look up Myoclonus, which is a type of seizure. It is common is us fibro types. Klonopin is commonly prescribed to alleviate it.
    Tibbie
  8. truthseeker67

    truthseeker67 New Member

    I too look forward to any theories or scientific explanations to this phenomon of jumpy limbs.

    Oh, by the by I get the pain in the back of my legs and hips too. I do work out on a regular basis and stretching may help some days? Sorry I don't have a good suggestion, maybe someone else could add an idea. Of course, I try to change my positions throughout the day which does seem to minimize problems.

    Blessings,
    Truth
  9. truthseeker67

    truthseeker67 New Member

    You have all been most helpful. I don't notice my RLS(restless leg syndrome) or Sleep Myoclonus all the time so I figure it must be following the pattern of my flares. I had heard of RLS, but never Myoclonus. Thank you, it was helpful to look this term up and research a bit.

    Also, the comment about resting periodically throughout the day is quite wise. I do notice improvement of my FM/CFS overall as I work to discipline myself such a schedule. Of course, sometimes work and children override my plans...LOL!

    I also shall check with my GP about the Zoloft which actually I want to wean off anyhow because I am afraid of the long term affects. I have been on it successfully for 8 months.

    Thank you all!

    Blessings,
    Truth
  10. layinglow

    layinglow New Member

    I had Restless Leg Syndrome for sometime, but developed Myoclonus, about 3 months after the onset of fibro and cfs. This was very different, and first involved the arms and legs and then progressed to the trunk, neck, and head.
    There was severe involuntary jerking of limbs, trunk swaying, quick head nods, and eye and mouth movements. Although the basic underlying defect(s) in pathologic myoclonus remain unknown, the condition is a sign of central nervous system dysfunction.

    If you will read some of Dr. Chaneys articles, on Klonopin, and his belief that we are in a mini-seizure state, this will help clarify this also.

    I began 6 months ago taking klonopin, and this has alleviated this condition. I have found that if when I have tried to use Elavil in my treatment regime this makes the myoclonus worsen.

    Although MRI, and CT scans, have not shown significant data, PET and SPECT have shown injuries to CFS and FMS patients brains, in various areas. If you look at our symtpoms you will note that most arise from dysregulation or dysfunction of Central Nervous System functions, and affect our bodies systems.


    I still have the myclonic jerking on occassions now--usually when sensory overload has occured, or I am trying to accomplish too many task at once, or am very tired after a too demanding day. An dose of klonopin relieves it, in addition to my daily dosing.
    Best wishes,
    LL

    [This Message was Edited on 04/22/2003]
  11. truthseeker67

    truthseeker67 New Member

    Do all of us (or will all of us) experience some sort of damage to our brains and/or nervous systems? Is this a common thought among scientists and doctors today? What supports this theory in layman's terms?

    Thanks for your imput Layinglow. :)

    Blessings,
    Truth
  12. dhcpolwnk

    dhcpolwnk New Member

    RLS seems to be common in FM, and I know it's also common in multiple sclerosis. I believe RLS is a sub-category of myoclonus, which I have in spades. However, my myoclonus takes place when I'm awake, not when I'm sleeping. It usually happens when I'm relaxing--e.g., sitting in a chair, or lying down (but not sleeping). It will happen while I'm listening to somebody speak, but it seems to stop when I speak myself. (I call this my medical excuse for talking!)

    I believe my myoclonus symptoms are related to MS, not fibromyalgia. But when the doctors told me this, I hadn't yet been diagnosed with fibro; so it's possible that fibro is at least a factor in what I have now.

    This started in my legs, but like LL, it has affected my arms, head, neck and trunk. About 11 years ago, when it was at its worst, the jerking was so violent that it nearly pulled me out of my scooter a couple of times, and when I sat at a table, I had to be very careful that I didn't smash my toes against the under-side of the table. My doc asked me how often I jerked; so I started doing a count for an hour every day. It got up to more than 180 in an hour.

    I tried many medications, including Klonipin, but I couldn't tolerate it. It turned me into a zombie. I slept all day. Since I don't jerk in my sleep, I guess you could say it worked, but the price was too high.

    I tried a couple of drugs that have been used for tics in Tourette's Syndrome. That cut way back on the jerks, but they depressed me. (One actually got me suicidal.)

    What ultimately worked for me was a "cool suit"--a vest and cap containing hoses that pump cold water. This cools down the brain and spinal cord, which are involved in MS. I don't know whether that would work for fibro-related myoclonus, or for RLS-type jerking that affects you in your sleep.

    Unfortunately, I still don't know what causes the myoclonus. But I had an EEG early on, and my neurologist told me the electrical impulses in my brain spiked when I jerked. That's very consistent with how it feels. I can feel a buildup of energy that feels as if it has to go somewhere. Sometimes, I have enough time to direct the jerks into the area where they will do the least harm--like into my head when I'm carrying something or into an arm when I'm walking. But sometimes, they come on too fast. So in my case at least, there does seem to be some connection with the Central Nervous System. However, since MS is a disease of the CNS, that's no surprise and doesn't really say anything definite about fibro-related myoclonus.

    Just a word of warning: I think the myoclonus in my arms has been at least a contributing factor to my current problem with rotator cuff tendinitis. I also think the myoclonus in my legs contributed to thinning cartilage and pain in my knees. So don't just ignore this symptom. Not that I think anybody really could!

    --Laura R.M.

    =========================

    layinglow said re Myoclonus:

    I had Restless Leg Syndrome for sometime, but developed Myoclonus, about 3 months after the onset of fibro and cfs. This was very different, and first involved the arms and legs and then progressed to the trunk, neck, and head.
    There was severe involuntary jerking of limbs, trunk swaying, quick head nods, and eye and mouth movements. Although the basic underlying defect(s) in pathologic myoclonus remain unknown, the condition is a sign of central nervous system dysfunction.

    If you will read some of Dr. Chaneys articles, on Klonopin, and his belief that we are in a mini-seizure state, this will help clarify this also.

    I began 6 months ago taking klonopin, and this has alleviated this condition. I have found that if when I have tried to use Elavil in my treatment regime this makes the myoclonus worsen.

    Although MRI, and CT scans, have not shown significant data, PET and SPECT have shown injuries to CFS and FMS patients brains, in various areas. If you look at our symtpoms you will note that most arise from dysregulation or dysfunction of Central Nervous System functions, and affect our bodies systems.


    I still have the myclonic jerking on occassions now--usually when sensory overload has occured, or I am trying to accomplish too many task at once, or am very tired after a too demanding day. An dose of klonopin relieves it, in addition to my daily dosing.
    Best wishes,
    LL