Muscle Jerks

Discussion in 'Fibromyalgia Main Forum' started by Shoobie, Sep 2, 2002.

  1. Shoobie

    Shoobie New Member

    Has anyone had muscle jerks during waking hours? I guess this would be similar to PLM (Periodic Limb Movement) that you can get while you're asleep, but it happens when you're awake.

    My onset is mainly at night, when I'm starting to rest. It's a feeling of uncomfort where I just want to get out of my body. My muscles will jerk -- a leg will kick, my arm will fly forward. I cannot control it. It usually lasts about 20 minutes and then, I think from pure exhaustion, I immediately fall asleep, almost "pass out".

    I am on Neurontin (low dose) of 200 mg. per day. This has stopped these "espisodes" that I was experiencing almost nightly. If I forget to take my Neurontin, I am very susceptible to having an episode that night.

    I was looking into myoclonic seizures and myoclonic jerks but I don't think this fits perfectly into either category.

    When I brought it up to my doctor, his first thought was anxiety attacks. I told him "I'm not feeling anxious at all! In fact, it happens when I'm in a more relaxed mode and don't have much on the brain at all." I've had very mild anxiety attacks before, and this is nothing like anxiety. Still no answer as to what it is.

    Just wondering if I'm the only one that has experienced this. I tried searching the message boards, but there was only one posting by someone who hasn't written since April.

    Thanks!

    -Shoobie
  2. Shoobie

    Shoobie New Member

    Has anyone had muscle jerks during waking hours? I guess this would be similar to PLM (Periodic Limb Movement) that you can get while you're asleep, but it happens when you're awake.

    My onset is mainly at night, when I'm starting to rest. It's a feeling of uncomfort where I just want to get out of my body. My muscles will jerk -- a leg will kick, my arm will fly forward. I cannot control it. It usually lasts about 20 minutes and then, I think from pure exhaustion, I immediately fall asleep, almost "pass out".

    I am on Neurontin (low dose) of 200 mg. per day. This has stopped these "espisodes" that I was experiencing almost nightly. If I forget to take my Neurontin, I am very susceptible to having an episode that night.

    I was looking into myoclonic seizures and myoclonic jerks but I don't think this fits perfectly into either category.

    When I brought it up to my doctor, his first thought was anxiety attacks. I told him "I'm not feeling anxious at all! In fact, it happens when I'm in a more relaxed mode and don't have much on the brain at all." I've had very mild anxiety attacks before, and this is nothing like anxiety. Still no answer as to what it is.

    Just wondering if I'm the only one that has experienced this. I tried searching the message boards, but there was only one posting by someone who hasn't written since April.

    Thanks!

    -Shoobie
  3. TeresaBnGA

    TeresaBnGA New Member

    I have muscle jerks too. Twitches, jerks, tremors they just seem to come and go in waves. The tremors happen mostly when I am trying to do something (i.e. writing, eating,etc..) I don't drive anymore because when I push down on the pedals my foot will start to tremor and shake.
    Not too long ago, I was sitting on the sofa watching TV and talking with my husband and had a glass of tea in my hand and all of a sudden one of those jerks happened and the glass of tea went flying across the room!!! hahahahahaha
    I keep trying to talk with my docs about this but they all think it is side affects from the meds, even though I tell them that it was happening before the meds.
    If you find anything out let us know and I will do the same!

    Soft hugs!
    Teresa :)
  4. homeskillet19

    homeskillet19 New Member

    Hi I get tremors , jerks and what not through the day and at night, I have noticed if I get jerks during the nihgt when I get into bed it is because I have taxed my muscles in the day and they are tight so when I go to relax and go to sleep they have been so taxed that they dont want to relax, when this happens then I know it is time to relax these muscles and take a few days off my feet and I take my epsom salt baths, let the kids fend for themselves(they are 17 & 19) and I just plug in some movies and stay in bed for the most part, then in a couple of days I start out slow I dont lift anything and I just start stretching, I take my time, if it takes more then a few days then so be it, I have learned it is okay to take a few days off then to be in a flare for a month or two.
    I do not take any meds.
    I think the biggest thing I have learned in the last 2 years since I got really sick is to learn your limitaions, I know some will say to fight through it, but with my experience it only makes my flare last longer, rememeber your muscles are being overworked so give them a break and when they start to go a twitching tremoring and rockin and a rolling just try to relax and go with the flow!LOL
    I hope you get to feeling better!!!!
    Your friend,
    Denise
  5. Shoobie

    Shoobie New Member

    Thanks for replying!

    Just like you, my episodes were happening before I was on ANY meds at all. Neurontin was the first med they put me on to help with this problem and to possibly help with the pain. It's the one med I'm not opposed to being on because it's stopped this problem.

    However, I never got an answer as to what it was.

    I will continue to search and let you know if I find anything.

    Take Care.

    -Shoobie
  6. Shirl

    Shirl New Member

    I was getting this also, but not as bad as you and the others.

    But I did get them when I over taxed myself worst than just on a normal basic.

    The seem to have let up since I have been taking Magnesium, I had forgotten about them untill I read your post!

    I don't take meds, except for a lot dose Xanax at 6pm to slow down my 'racing brain', other than that I only take supplements.

    I don't know the name of this either, if any of us find out, well we will post it.

    Hope we all get to find out soon!

    I have had this off and on for 20 years, so at least we know its not a killer thing, just dangerous, as with the ice tea!!

    Shalom, Shirl
  7. Coping

    Coping New Member

    I get the "jerks" at night time when I am trying to relax and go to sleep. In fact, about a month ago I was laying on my back with my hands on my upper abdomen trying to relax. All of a sudden my hand flew up and I slapped myself in the face! It was too funny, BUT it made me wonder how often I beat myself up in the middle of the night. My doctor told me it was a fibro thing, but I can't remember the name of it. I take Tegretol XR 100 because I couldn't afford the Neurontin. It still happend with the meds. I have started on magnesium and am looking forward to new results!
    Good luck and try not to "beat yourself up"....LOL
    Tricia
  8. Shoobie

    Shoobie New Member

    It’s good to know I’m not alone!

    You’ve got a good point about the muscles being so taxed they don’t want to relax. I work full time and have had a lot on my plate the past couple of years, so I’ve been on the go so much, pushing my poor little body to it’s limits (2 years of night school, my wedding, buying a house). Now that I’m done with most of the chaos, I’m making more time to sit and actually relax! Almost feeling lazy about it… but I know that’s what I should be doing if I want to take care of my body!

    I’ve only been on the board for about a month now and I’ve made a very long list of things to discuss with my doctor at my next appointment (September 24th). One item on the list is magnesium (and also Zinc). I have been extremely passive the past few years and haven’t done much on research for my illness in a long time. There’s a great wealth of information on this site, and since I haven’t been up on this for so long, my brain is on overload!

    Tricia, that’s too funny about slapping yourself (even though technically it’s not funny). I hope you’re not beating yourself up at night!! Has your husband reported you hitting him? I almost cracked the dashboard of our car one night when my leg shot out unexpectedly. Keep us posted on your progress with the magnesium.

    Thanks for your input! It’s greatly appreciated (and comforting)!

    -Shoobie
  9. catlady51

    catlady51 New Member

    I'm new to this board but just wanted to put in my two cents worth - I, too, get muscle jerks on occassion (not as severe as yours, though). But, alas, do not know the cause either. I take Neurontin as well. I'm sure you know it is mostly used as a seizure medicine - mostly taken by epileptics. I had been taking 2400 mgms a day until recently - I, too, can't afford it much longer. Would like to find out more from Tricia about the Tegretol XR.
    Good luck to you and God bless.
    Lyn (CatLady)
  10. ValG

    ValG New Member

    I had muscle jerks while I was on Effexor. That med was stopped. Several months later I was put on Paxil. The jerks gradually came back and increased over the 2 years I was on it. In the last month, I was unable to sit still. I stopped the Paxil and the day time jerks stopped. The bedtime ones remained and were controlled with Pamelor or quinine. But when I'm not too tired or stressed when I go to bed, it doesn't happen. These 2 meds are SSRIs. This is a bad class of meds and also includes Prozac, Zoloft, Celexa. It also causes sexual disfunction. And I think near the end it was causing sleep disturbance. Valerie
  11. SaraD

    SaraD New Member

    I am sitting here with my jaw wide open, my husband doesn't understand that I have found people so similiar to me...
    I was just explaining this to him and another couple 2 nights ago. It seems to only happen when I am trying to go to sleep or the few times I awaken during the night, literally both of my arms violently "jerking" out like I am trying to shake my hands out or something and I literally can't control it. I haven't even mentioned it to my doctor, just figured he doesn't care, like anything else I tell him... So I haven't a clue what it is or why, but just wanted to mention that I am with you unfortunatly. Good luck all! Thanks for posting.
    Sarad
  12. ruthiepie

    ruthiepie New Member

    and the only meds I take are Ziac for B/P, Prilosec for GERD and Lortab for pain (only when I really have to have it)one a day, most of the time, sometimes, skip a day, if not very active....sometimes two if very active (never had to take more than two in a days time).....these "jerks" usually occure while I am in the recliner, relaxing....left leg mostly, but sometimes its stomach and upper body area with left arm only....weird!!!!.....also very annoying....God Bless
  13. Shoobie

    Shoobie New Member

    that's it's the meds that cause this. I had this problem far before I was on any medication at all.

    I'm leaning toward the theory of your muscles just "freaking out" because you're trying to relax them. "Relax?" they say, "What the hec is that?" LOL

    I was just concerned that it might be a myoclonic seizure.

    Myoclonic Seizures:
    This is best understood if we break the word down. Myo means muscle and clonic means jerk. A person having a myoclonic seizure will jerk abruptly as if they have received an electric shock or a big surprise. These seizures usually occur just after waking or just prior to falling asleep. There is a brief loss of consciousness which is barely noticible, due to the shortness of the seizure. The myoclonic seizure is a type of generalized seizure. It may affect the whole body, or just a part of it, e.g. an arm or a foot.

    I'm not sure that it's that either. I'm wondering if you can actually have PLM when you're awake??

    Periodic Limb Movement Disorder
    Periodic limb movement disorder affects people only during sleep. The condition is characterized by behavior ranging from shallow, continual movement of the ankle or toes, to wild and strenuous kicking and flailing of the legs and arms. Furthermore, abdominal, oral, and nasal movement sometimes accompanies PLMD. Movement of the legs is more typical than movement of the arms in cases of PLMD. Movements typically occur for 0.5 to 10 seconds, in intervals separated by five to 90 seconds.

    In 1979, the Association of Sleep Disorder Centers (ASDC) set the parameters for determining the presence of PLMD:

    A formal diagnosis of nocturnal myoclonus requires three periods during the night, lasting from a few minutes to an hour or more, each containing at least 30 movements followed by partial arousal or awakening. (ASDC 1979)

    Still confused.
    -Shoobie
  14. JannyW

    JannyW New Member

    I get these quick little spasms, almost like when the doc is checking your reflexes. I can get them in my legs, feet, toes, fingers, arms or hands. I mentioned it to my PCP and he's baffled by it ... but thinks it may be due to the meds I'm on. We changed a few around at this last visit, so will see if there's any change.

    Jan ^v^
  15. Shoobie

    Shoobie New Member

    I know that when I go to the doctors and they do the reflex check, the doctor always is surprised at how "sharp" my reflexes are. I really kick!!

    How about all of you?

    -Shoobie
  16. TeaBisqit

    TeaBisqit Member

    In some cases, I don't think this is caused by meds at all. I got both from the outset of this illness and wasn't taking any meds at all. I've read alot of people with fibro and lyme get the sleep jerk thing. The muscle twitches, I believe, might be a mineral deficiency because when I took alot of malic acid with magnesium in it, I noticed a huge reduction in muscle twitches, like it almost went away. When I had to stop taking it because of my stomach, I got the muscle twitches back. I've also noticed that powdered vitamins and minerals seem to help me with it.

    TeaBisqit
  17. hbic

    hbic New Member

    I just posted on this topic tonight, I should have searched first.
    I had taken a driving trip to PA. I live in Buffalo, NY. We went to Grove City to the Prime OUTLETS for school clothes shopping for the kids(its a must go), which is nearly 3 hours drive from the B-lo. There 4 hours, and it was MOBBED! Then drove an hour and half back to Erie, PA to Target. (NO SALES TAX ON CLOTHING IN PA), there for 2 hours, then drove hour and half back to Enima, I mean Buffalo. I was tired, in pain, had to crawl to the living room couch(actually my fake cuddle ewe on the living room floor in front of the tv and the Playstation 2, what a life, this is what its like to be a cat) I was resting, watching tv, and suddenly my leg wanted to be in the kitchen. Wow! Thats new! 10 minutes later, both legs were doing the Lambada. 10 minutes later, the other leg, for about an hour this went on.. And Im getting muscle spasms in my inner ear lately, very annoying. The worst is the spasm in my left eyelid in public places, and always when Im talking to someone. Can you imagine the look I get? I can hear them now telling their co-workers, " This lady I was talking to today, I think she had Tourets Syndrome or she was on drugs." The bonus- People Get out of your way! You never have to stand in line. Youve got an excuse for going through that yellow-red light. Its easy to make new friends. Of course they all think they're JFK, or dogs, or pop machines, but hey, Friends is Friends, right? Youre not alone, and neither am I. Keep your sense of humor. It helps alot.
  18. kadywill

    kadywill New Member

    ditto ditto ditto on all the above......this is like the x-files or the Twilight Zone.......freaky stuff. Are we all clones????
    Be well, you jerks!!! lol
    Love,
    Kady
  19. KK027

    KK027 New Member

    I have the muscle jerking/twitching also. It started when all of my other symptoms started, approx. 3 years ago.
    I have asked my doctor and he does not say anything but that is part of having CF/FMS? Does that sound right?
    My arms and legs twitch out of nowhere.

    Lots of luck to all of you,
    Karen

  20. dhcpolwnk

    dhcpolwnk New Member

    I just came across your original message about muscle jerks and was really amazed. What you describe sounds just like the myoclonic jerks I've been dealing with for the past 14 years. (They're not myoclonic seizures, though. I don't lose consciousness.) They started in 1988 but were at their worst about 10 years ago. My neurologist gave me an EKG and verified that what I was feeling was really happening. I could feel a buildup of electrical energy in my body, which culminated in a jerk, usually in a leg, but eventually in one or both arms, my head, or even my whole body. At one point the jerks became severe enough to nearly pull me out of my scooter! And I got *lots* of them, especially when I was sitting and relaxing, but also at other times. My neuro asked me how many; so I started doing one-hour counts. At one point, had around 180 jerks in an hour. Needless to say, this was exhausting, and I think it may have contributed to my muscle pain.

    My neuro believed this was what he called "segmental myoclonus" associated with my MS. (The MS had been diagnosed 10 years earlier.) Just in case, though, he sent me to the Movement Disorders Clinic at UCLA, where I saw five different specialists. Ultimately, they agreed with my neuro.

    My fibroneuralgia was diagnosed only three weeks ago, and though I may have had it for a while, I don't think that's what caused my jerking. However, I wonder now whether muscle damage from the jerking might have at least contributed to the fibroneuralgia.

    By the way, I went through all the usual meds to control myoclonus and seizures, including Klonipin, but either they didn't work, I couldn't tolerate the side effects, or both. The only meds that controlled the jerks were Haldol and Orap, which usually are used for Tourette's Syndrome tics. Unfortunately, both caused me big-time depression, and the Orap made me suicidal.

    What finally worked for me was a "cool suit," a vest and cap with hoses that pump chilled water to cool down the brain and spinal cord. I hadn't expected this to work, but it did. Then the jerks seemed to go into remission. They were still there, but very subdued in both strength and number. They started up again a few months ago, which I interpreted as a new MS exacerbation. (I'm not unhappy about that, either. The relapse qualified me to get some financial help in paying for Avonex, a very expensive MS drug for which I don't have coverage.) The jerks are still with me, but seem to be de-intensivfying and reduced in number again. This pattern of attack-remission is typical of MS (and, it appears, of fibromyalgia as well).

    Anyway, I'm very concerned about myoclonus side effects associated with various meds. I'm going to ask about Neurontin, which appears to *help* many people with the myoclonus and also may (I hope) help me sleep. (I'm pretty sure the sleep problems are related to the fibro.)

    It's interesting to me that most people with similar muscle jerks seem to get them during sleep, when they first wake up or when they go to sleep. I don't get them at all in my sleep, and they seem to subside or disappear when I'm concentrating on something (*not* on the jerks themselves) and when I'm talking. After a doctor at UCLA pointed that out, I had a great laugh. My mother used to say I was born talking, and she said that her family used to say she was delivered by her tongue--an Egyptian way of saying the same thing. So I now have a medical excuse for talking!

    --Laura

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