Anyone with FM/Movement disorder

Discussion in 'Fibromyalgia Main Forum' started by Ivey, Aug 6, 2003.

  1. Ivey

    Ivey New Member

    Hi. I posted earlier with my "new" diagnosis and have run a search of old messages to see if anyone is experiencing the same "movement disorder." I have had FM for at least 7 years (got diagnosis yesterday) but what happened to me in May has scared me to death. I was having my normal joint pain, "mystery fever" and ulcers, as well as new vision problems and new numbness on my face. Soon thereafter I had twitches (which led to spasms) all over my body. I was hospitalized for one night and told the next day that it was a physchosomatic movement disorder. My rheumatologist says that a rare symptom of FM can be a movement disorder such as this (myclonic jerks). I have only had them one time after the episode in May, but I seem to get head-bobbing and tremors after the slightest bit of exertion. I am still struggling with the "all in your head" syndrome as well. I cannot find anyone who has experienced something like this, with the exception of those with MS - which has been ruled out in my case. Can anyone offer any similar symptoms such as mine? It would do me A LOT of good to know that someone else out there is "jerking" and "bobbing" all over town! Thanks - Ivey
  2. Ivey

    Ivey New Member

    hoping someone has a similar experience!
  3. Ivey

    Ivey New Member

    hoping someone has a similar experience!
  4. MissRachel

    MissRachel New Member

    Hi Ivey,
    I had responed to your last post and asked about the the movement disorder. I was wondering if it was the same thing I was experiencing and by the way you describe it, it is!

    I totally know what your talking about. I can't get to sleep or nap because of these constant jerking type muscle spasms! It happens through out the day too. I'll be on the computer reading and my arms will start twitching. Or I get like a small shock in my head or shoulder.

    I get the jerking pretty much every night (and at nap time) and almost everyday. I thought it was a reaction to MS Contin because it only started after I strated this medication.

    I'll definatly bring this up when I see my Fibro DR on Sept. 2. I'll let you know what his response is and hope that more on the message board will have some input too.

    YOur not alone,


    P.S. I think i'll do a search on the web. I'll keep you posted.
  5. Annette2

    Annette2 New Member

    A lot of us have Restless Leg Syndrome - our legs and other parts of our bodies twitch uncontrollably, mostly at night when we're relaxing. I take Neurontin to help this. Another drug is Klonopin. Do a Search here on Restless Leg Syndrome, Neurontin and/or Klonopin and read what other people have to say about this.

  6. MissRachel

    MissRachel New Member

    Kurt posted this a few months ago. It sounds like what you (and me) are experiencing.

    Myoclonic jerks 03/28/03 09:43 AM

    I was wondering how many other poeple suffer from these. When you are falling asleep, sometimes your body will decide to suddenly fire up some nerves causing either you whole body to jump or be shocked or sometimes it is a limb. You probably know that feel......when you are falling asleep and you are almost there....and then you suddenly jump and your back awake!! :) I hear of a lot of people suffering from restless leg syndrome, and I was wondering if this is the same or not. My understanding is restless leg syndrome occurs more and night than during the day, when you are trying to sleep. Anyways, I find my self having this mycolonic jerks a lot lately when I am going to sleep. They are not the annoying and probably not worth mentioning. It seems mine are concentrated in my legs most of the time, but I do get them in other parts of the body! Anyone else have this problem?


    I found this article after I posted this, it explains it a little better.

    Sudden involuntary brief lightning- like movements of one or more extremities or part of an extremity occur as a normal phenomenon in healthy persons when falling asleep. This happens also in infancy: most parents have seen their babies having such jerks, single or 4 to 5 in series during sleep. In a study done in 1969 Wolf studied the distribution of various spontaneous behavior in sleep in the neonate (startles, sobbing, inspirations, gentle lip ,movements, erections, transient smiles, and twitches of the face and small muscle groups of the limbs) and found myoclonic twitches to be the least frequent. Myoclonic jerks are generally rapid, brief, involuntary, repetitive, irregular and arrhythmic, stereotyped movements that are either focal or generalized and last 0.5 to 5 seconds. They are different from jitteriness or shuddering which have the characteristics of a tremor. Sleep myoclonus only occurs during the early stages of sleep. In infants with benign neonatal sleep myoclonus, myoclonus was bilateral, synchronous and repetitive, located primarily in the distal parts of the upper extremities and directed toward flexion of fingers, wrist, and elbow. Ankle dorsiflexion myoclonus was also present in two infants. In infants with myoclonic jerks can be repeated for a prolonged period and have been noted to occur for up to 30 minutes continuously in some patients. Infant myoclonus has also occurred synchronously with repetitive sound stimulus.

    Myoclonic jerks are associated with discharges in the brainstem reticular activating system, which is also involved with initiation and synchronization of normal sleep. Neonatal sleep myoclonus probably represents a benign disturbance of this brainstem control of sleep. It is not associated with paroxysmal epileptiform EEG discharges and is presumably not a form of epilepsy. The differential diagnosis of neonatal sleep myoclonus includes myoclonic seizures, benign myoclonus of early infancy, benign familial neonatal seizures, essential myoclonus, and myoclonic jerks in opsoclonus- myoclonus. The essential features of the diagnosis which help differentiate this disorder from other more pathologic disorders include:

    1. The seizure type is myoclonic jerks that are partial, generalized or "marching".

    2. It appears only during sleep.

    3. It lasts from a few minutes to half an hour and can be repeated several times during each sleep period.

    4. The general condition of the infant is completely unaffected when the myoclonic jerks continue for a long time.

    5. The EEG is normal even during seizures.

    6. It starts within two weeks of age often a few days postpartum and generally diminish gradually during the first six months of life.

    Infants with this disorder have normal neurologic exams and normal development both at presentation and on extended follow- up. The prognosis for these patients is excellent and treatment unnecessary.

  7. Caralissa

    Caralissa New Member

    I'm glad you brought this up. It scares me to death when it happens and my doctor doesn't know why my body is doing this. Restless leg is common with FM from what I've heard. Though I get thes muscle twitches at any time of the day, definitly worse in bed. Its like I can't sit still. The other thing you mentioned really caught my attention though, "tremors after the slightest bit of exertion". I get this a lot and to me is the scariest. When I have overused a limb, which sometimes doesn't take very much, that limb will start shaking uncontrolibly. If I rest my head on my hand while laying on my side, my arm shakes. When my legs are very week and I try to stand, They shake, either one or both. My legs sometimes shake when I am sitting down. The wierd thing is that when one of my limbs is shaking it all goes almost completely weak. I have no idea what causes this, but you are not alone. If you find out, please let me know. Good luck, Caralissa
  8. Ivey

    Ivey New Member

    Thanks to everyone who posted. Unfortunately, I don't think my "jerking" is considered RLS as it has never happened when I am trying to fall asleep. It happened both times in the middle of the day. If I relax for several hours, the spasms go away. Could it be anxiety? Does FM cause anxiety in a person who has never suffered from anxiety? Ugh... I think I will be confused about this condition forever! Ivey
  9. kredca4

    kredca4 New Member

    Haven't had them that bad tho. Maybe it's the med's I take now, because, now and then, I don't take them as often during the day as I usually do because, maybe my Pain level is lower or I'm not as active.

    Well it seem's like thoes are the night's that my body does the, "Cool Jerk", only there's no music to trigger it.
    You might want to type the name myoclonus into your search engine, and find some very interesting link's, that can shed more light on the Why these happen.

    I found this one off of a search I was doing on Muscle Tension Dysphonia, it's due to " excessive tension in the intrinsic and/or extrinsic Laryngeal Muscles".
    That's what happens when I sing some time's, I get something like muscles spasams in the Diagraphm, and it happens at the darnedest times.

    When this happen's, I also have the "Myoclonus" at night, or when I'm just trying to relax and start to doze off.

    Guess it's just one more thing that's related somehow.
    I was looking these up, due to my CMP, and also Inflammation.

    I also have the Electrical shock symptom of FMS, where I can shock people, lol, trouble is now, I'm the one who's getting the Shock's. Becareful at the gas pump, touch something after gettin out of your car, before you start pumping.

  10. erkymm

    erkymm New Member

    hello everyone i have severe fibro mps osteo in hands, i woke up one night my whole body every muscle popping and twitching, had sleep study test done , i have periordic limb movement disorder, 60 arousals per minute which is high , 5 to 10 is normal, most people have rls with fibro, but more advanced people have them both. ask your dr to have sleep study test done. this is not good for your heart, and it proves you are not getting enough sleep to restore your muscles. hope this will help , i am on klonipin and mitrex for this one problem . other meds for pain also.
    [This Message was Edited on 08/07/2003]