Discussion in 'Fibromyalgia Main Forum' started by Gothbubbles, Nov 5, 2006.

  1. Gothbubbles

    Gothbubbles New Member

    What do you even call it when every muscle in your body takes turns jerking you around enough to where you're crying and wishing you were dead just so you could sit still?

    What the crap is this garbage? The last three days I've been having these, though yesterday they were actually bad (not just annoying). My head jerked, my back, my stomach, my legs, my arms, and some of the muscles I didn't even know I had.

    I popped 4 motrin and my boyfriend dunked me in a hot bath (which I didn't think would do anything) for about 2 hours and they eventually stopped (OMG).

    This was PURE . I was scared, in pain in every muscle, and my body would not stop the constant spasms. I was experiencing them for about 3 hours. I'm in another state and I don't know what I would have done if I had to go to the hospital. My boyfriend was determined to take me but I convinced him not to (and I'm glad! I didn't need to wait in an uncomfortable waiting room for 2 hours just to get told I was a "Hysterical woman" and given antidepressants)

    Does anyone else get this? This is pretty new for me, and ridiculous and scary and awful. I thought I'd be done with them by now (crashed hard a couple days ago with shakes and jerks of a lesser scope) but I am so scared they'll be back later on today and won't stop.
  2. elliespad

    elliespad Member

    Have 2 thoughts, first,

    Myoclonus describes a symptom and generally is not a diagnosis of a disease. It refers to sudden, involuntary jerking of a muscle or group of muscles. Myoclonic twitches or jerks usually are caused by sudden muscle contractions, called positive myoclonus, or by muscle relaxation, called negative myoclonus. Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Myoclonus sometimes occurs in response to an external event or when a person attempts to make a movement. The twitching cannot be controlled by the person experiencing it.

    Second, which is quite a stretch, maybe,

    Parathyroid hormones are necessary to regulate and maintain normal blood calcium levels. Lack of parathyroid hormones (hypoparathyroidism} leads to low blood calcium (hypocalcemia). Hypocalcemia can cause muscle irritability and spasms.

    Parathyroid hormones are produced by parathyroid glands located adjacent to the thyroid gland. If the parathyroid glands are surgically removed during thyroid gland surgery, hypoparathyroidism and hypocalcemia can occur.

    The treatment of hypoparathyroidism and hypocalcemia is with oral calcium supplements and oral vitamin D. Oral vitamin D increases the gut absorption of calcium in the diet. Along with calcium supplements, vitamin D helps to maintain normal blood calcium levels in patients with hypoparathyroidism.

  3. Susi-di

    Susi-di New Member

    I really think you should discuss this with your doctor, and have some testing done maybe too, at least to rule out anything serious. Is it at all possible that you were having an allergic reaction to something? I hope you find out what that all was. Best of luck. Susi-di
  4. Gothbubbles

    Gothbubbles New Member

    Thank you so much, for your help. It sounds kinda like the myclonis thing, except that when it was bad yesterday, it was completely constant. My neck would jerk, then my stomach, then a leg, then my neck again. Or say my lower back would jump and then my shoulder and my neck would turn. It didn't let up until after my bath.

    I had these again today. I was good all morning, and into the afternoon. We went to a Food Lion and I started getting baby jerks, maybe once every 10 minutes or so, little tiny ones. Not even annoyiing. About 9:30 I got them closer apart, then my boyfriend told me to get in the bath about 11:00-11:30 (he let me finish watching the battlestar galactica episodes he taped for me).

    I just got out of the bath and my tremors are gone, but I feel them starting again. I'm only 25 what is this crap! It's like I have parkinson's!

    I am going to talk to my doctor when I get back home to Vermont (I'm in Virginia right now). Thank you agian, and any advice or experience you can offer I would be so grateful.

  5. country_cinderella

    country_cinderella New Member

    something else to consider as a possibility is Multiple Sclerosis, but if you are not having any other symptoms it is less likely

    It is good you are planning to go to the doctor as soon as you get home. You boyfriend also sounds like a wonderful person to be so understanding and helpful. I hope the doctors can help you quickly.
  6. mrdad

    mrdad New Member

    I'm so sorry that you are having problems. I knew that
    you were flying this weekend and that you were concerned.
    How much long do you plan to be away? Seeing a Doc for
    some possible testing would be an excellent plan. Thank
    heavens you have such an "heads up" boyfriend. Please let
    us know tomorrow how you are doing, OK?

    Joe aka MRDAD
  7. Gothbubbles

    Gothbubbles New Member

    OOH your solution osounds delicious! I'll try taht :)

    So far I've been doing hot water dunks and popping motrin. I was told by my BF's mom (emt trained) that that's what they do with spasms.

    I did some more reserch on that myoclonus and it sounds more likely that that symptom describes me. Although it;s a symptom, it's hiliarious that the tretment of choice is Klonipin! I am not on klonipan right now, but it was something I was going to request from my doc, many people here have said hey've had improvement with ti, and it's worth a try.
  8. NyroFan

    NyroFan New Member


    I had similar problems and went to a neurologist and was given medicine for the conditions.

    Recently I had to make an extra appointment with him because I started having what he dx-ed as 'involuntary body movements'.

    My one med was increased by 100mg.

    My suggestion: a neurologist?

  9. mrdad

    mrdad New Member

    I'm just checking in to see how you are doing today!?
    How long are you going to be in Virginia? Do hope that
    your symptoms have subsided but we need to find the cause
    if possible! Sounds like ya got a great boyfriend! He
    doesn't happen to have a SINGLE Grand Mother about my age?

    I'll "talk" to ya later, "K"?

    JOE aka MRDAD
  10. ....whatever medications you are on, should be looked up on website(s)--not just one website, because, it took me *several* to indeed find out what I'd suspected after 4 days on Provigil--that, it infact was, responsible for my severe upper abdominal pain...I had to be sure, as I have pancreas/liver problems, and by day 4 OFF of it, the pain was still not gone, I was worried, & hubby was insisting I go to ER. The next day (5th) though, it was gone. TG...

    Now, specifically regarding the twitches, jerks & spasms.

    I have always had these as long as I've had fibromyalgia, and was told it was "part of fibromyalgia'===but I'd only get them rarely, 95%+ of the time, was in bed, at rest..

    My pain dr disagrees with the "part of fibromyalgia" after they got worse.

    My neuro diagnosed "intention tremors" (there are intention tremors, and essential tremors", it's based on *how* they happen, *when* do they happen when at rest, or attempting to reach for a glass off the table, etc.. things like that)

    My neuro also admitted, that some meds may have helped the massive increase in the jerking & twitching. even after they were discontinued.

    These are the meds that made them worse, Paxil, EFFEXOR--constant twitches, jerks, (even threw remote accrossed the room-more than once.)Effexor also gave me heart probs, for which I'm still on med for, 4.5 yrs later.

    Remeron-I shook & jerked like a ragdoll. Hubby would try to "hold me down" once when it was terrible (head was even like a 'bobble-head doll" I was up, getting dressed to go somewhere. I had to sit for quite a while, sit to do my make-up (boyyy do I HATE mascara!!!!!)

    Lyrica-when I got up to 300mg I had a terrifying experince in bed, where, I first jerked in the torso-which was violent enough to *shoot me up out of bed, to a nearly complete sitting position* then my head thrashed side to side a few times, very very rapidly, then...I just dropped back down on my pillow, as if nothing had happened. My doctor discontinued the Lyrica the next day. No weaning.

    The worsening of the twitches & jerks, & increase in frequency (nightly now.) Never went away though. I'm on=== Clonazepam (klonopin) for it.! My neuro also increased my anti-convulsant at that time.

    I had been on klonopin for yrs prior though, and don't know if I would have been that way the whole time, had I not* been on it, ??? I just DO KNOW FOR A FACT anti-depressants/Lyrica made it worse. There's a condition meds can cause, called Tardive dyskenesia, symptoms can be mild, to nearly/fatal, putting *some* people in wheelchairs, unable to feed themselves anymore...

    I believe I developed *some* symptoms of TD. =twitches, jerks, spasms, uncontrolled muscle movements, & on Paxil- 'foot flapping' that never went away. (I kick my feet side to side like crazy-drives hubby nuts.)

    Many people on fibro & other sites all over, were in a class action lawsuit against Paxil for many of these symptoms after taking the drug. I know of 1 person, personally. I never did, because, ??? I just dont' have the fight, and I know my disease/body sucks anyways, but..

    I will NEVER take another anti-depressant, for as long as I live.

    I hate that LYRICA had done it as well, because, otherwise (and blurred vision, sporadically) It helped some of my worst symptoms that were absolutely intolerable---thank goodness-though--after I quit Lyrica--2-3 major symptoms it GOT RID OF, they did NOT come back!!!!! Hallelujah!

    I'd check ALL avenues, look up your meds, and every single reported side effect during their studies, etc...

    and would see your Primary doc, or a neuro--Either one can put you on meds for this,

    A neuro can also run other tests, but, you can spend $1,000's + on tests, just to be told "tremors" etc and end up where you could have began initially....just on meds to control it.

    But, if that would give you piece of mind, too-go for it (neuro) always worth ruling out other things, if they might be suspected.

    I had seen a neuro for over 3 yrs, so I saw him for mine, and still didn't get *definitive* answers, and I'm dx'd with MS. He just said "it could be the med (11 days into discontinuation, even) "could be fibromyalgia", and...I don't remember the other 2 things. So, my sister and I left there, saying "uhh, sooo....what* was his doggone answer? 4 different "possibles" and my charge slip just said intention tremors/fibromyalgia.

    Now like I said, My pain clinic doc wants me to see him again--even though when I said "intention tremors" she said--what's that?-------WRONG RESPONSE "DOC"! she said maybe a virus has damaged nerves (like MS does) in the brain, and is causing it....etc..

    I haven't seen him yet, but, she is insistant that I do sometime. I know enough, to know Lyrica increased this prob by at least 3-4times, for me.

    Don't need a doc, or more meds to tell me. She is just gonna have to increase the clonazepam. I'm trying to *reduce* the # of scripts, and be as *natural* as possible. My liver won't take more anti-convulsants, etc..

    Best of luck to you, I know those are annoying, embarassing, and scary....

    One year at hubby's g-ma's house, for thanksgiving, I was sitting at a huge table, with the family, eating, leg jerked so hard it kneed the table, and nearly spilled *everyone's* drink.....They looked at me, thinking I did it on purpose or.....??? I just explained what happened, but.....still felt like an outcast.

    Wish u the best.

    Laura M
  11. Gothbubbles

    Gothbubbles New Member

    Thank you for sharing your story. The only drug I take is verapamil, and it is to control my heart palpitations. I've been taking it since february.

    Do you remember what meds that you were given? Can you tell me anyhing else about your spasms? Did they completely go away on the meds? I definitely intend to talk to my dr, and possible see a neurologist again (my DR is great though so I might be okay with him)

    Lol, I mentioned to my bf what you said, and he DOES have a grandma, but he says you can't have her (he's a grandmama's boy)

    More info in case I left anything out:

    My spasms started last thursday night after about two weeks of the hardest work I've ever done in my life, and so I crashed very hard. I could say my d-ribose caused it, since it takes lessens my muscle pain (which normally keeps me from pushing myself, since the muscle pain includes the bone-crushing fatigue that makes me bedridden), and therefore with less muscle pain I was able to push my body to it's absolute limits. There is certainly more going on here than an ATP dysfunction. And it seems I know that now lol.

    So for others of you on D-ribose, please keep using it, but remember not to increase your activity levels beyond what you were used to.

    Anyway, that's my theory. I just thought it was a crash, but I worry that I might have given myself brain damage. I have expereinced the spasms/tremors every day since then. I have been taking about 2 hours worth of baths a day to keep them calmer, they were so bad at their worst that i was crying, my muscles moved so fast, and so constantly. It did not ease up, and did not run any sort of course.

    I beleive it is getting worse. They come on earlier, and they start as once every 5-10 minutes, then once a minute, then once every 10 seconds, then constant. The major places effected are my neck (where the head joins the spine/ and where the shoulder neck hits the shoulder) the back (lower part, just above the hip bone), the muscles of the stomach, the thigh muscles, and the inside muscles of the upper arms (to where they join the elbows).

    I am capable of jerks, and twists, as well as spasms and shakes. Sometimes the spasms will jerk and then shake me. I look like Katherine Hepburn sometimes.

    I am determined to try klonipin and get another MRI done (haven't had one in about 6 years)

    I do not have any facial tics, eye blinks, or anything like that. My jerks have no purpose, and they are not worsened or triggered by me trying to reach for htings or walk (though they don't stop when I do things--they don't seem to discriminate between rest and activity).

    I really appreicate the help, and the stories from those of you who have had these spasms/myclonis especially.

    My neck and shoulders are hard as a rock and I can't even have them massaged because I spasm so much that if my bf tried rubbing them the'd just jerk and tear and cause me injury.

    I am beginning to really hate hot baths! (you would too if you had to sit in one for 2-3 hours a day lol). I'm just glad I found something to stop them. I tried to get my bf to tape them so I'd have something to show my DR, but he was really upset that I was suffering, he just wanted to make sure I was okay.
  12. Gothbubbles

    Gothbubbles New Member

    I'm now taking .5 mg of klonapin 2x a day. I notice when I first take it it zonks me out hardcore, but for about 2-3 hours I have NO spasms! (bliss)

    But after about the 4th hour they start their beginning pattern: 1 every 30 minutes or so, then 1 every ~10 minutes, then 1 every ~5, then 1 every ~2, then several a minute, then constant and violent until I take my next dose.

    I'm thinking about cutting my pills in half and taking them 4x a day (possibly minimizing the intial zonking, and keeping the effects up for longer periods.)

    Anyone have experience with this? I welcome any and all replies
  13. for us, than Lamictal, and I believe that is one of the drugs my sister had to have blood tests done while on...she also had allergic rash from it and others similar.

    Most on this board, tolerate clonazepam well, I don't know of anyone that says they have blood tests specifically due to being on clonazepam to check blood levels, blood sodium levels, or liver, can be with drugs like Lamictal, and many stay on very low doses of clonazepam with good benefits...I've been on clonazepam for years, for myoclonic jerks/twitches, and also was on an increased dosage of Topamax for my intention tremors..I'm on a tiny dose of gabitril now, and it's not helping anything, so I'm soon to return to my neuro,

    I see my primary doctor next week, though, and will ask her about either increasing clonazepam, since I have NO side effects, or switching to something similar.

    The neuro will have to try a different anti-convulsant, but, it's not just for tremors, it's for a whole lot more, involving nerve pain and some damage done from surgery, etc etc etc...

    I plan to give Mirapex a mention to PCP, and may give it a very cautious try, as pain meds are about as useful to me as anti-depressants.

    Also mentioning some other meds, and tens unit, etc..

  14. You've mentioned several times, you can't get any* of the meds you mention for yourself.....WHY? and then, what DO you take???

    What kind of doctor do you see, that won't give you anything you think may help you, or even something similar, in the same drug category?

    What the heck is the doctor for, if only to watch you suffer, and offer you *nothing* to help?

    I would not be staying with any doctor that wouldn't give you *anything*....and not open to at least ONE suggestion... geez.

    Just concerned about your lack of treatment, per doctors..
  15. sascha

    sascha Member

    there may be treatment, but you can't know until you find out what's happening.

    i have a form of dystonia, which is a muscle movement disorder. mine is focalized in my throat area, which affects my speech. for a while, i went to a hospital in NYC where i was injected with botox to stop the involuntary spasming in my vocal cords. there are more generalized forms of dystonia.

    please find out what is going on! then you can figure out the best course of action to take. it must be scary- hang in there- best wishes from Sascha
  16. AllWXRider

    AllWXRider New Member

    Are you perhaps low in Magnesium, potassium or calcium?

    Magnesium especially. If you take diuretics, you can lose minerals fast as the kidneys will dump them.

    A food allergy could also cause a mild siezure.
  17. Gothbubbles

    Gothbubbles New Member


    My magnesium levels were on the lowest end of normal last time I got them checked (last month) even though I was taking 1000mg a day of magnesium.

    My calcium has been fine, and potassium should be elevated if anything because of my verapamil.

    I'm not on any diuretics.

    I'm pretty sure it's not actually a seizure, I don't lose conciousness at all. My doctor said they were myclonic spasms, but not Parkinson's (because my arms were not stiff--usually the first place parkinson's manifests).

    I'm taking extra magnesium just in case!

    I have an appointment to see a neurologist at Dartmouth Hitchcock in NH in january, they were really cool last time I was there.

    I'm betting this is just typical CFS convulsions that many of the rest of you have.

    I'm 25 this is really freaking lame. I'd say besides the pain, and the interference with doing stuff the part that messes with me the most is being in public like this. because I'm so young people look at me like I'm on drugs. :Sigh:
  18. b~kay~b

    b~kay~b New Member

    I have the tremors and the jerking and there are a few times youre wondering omg this is it its gonna take me out. well when i told teh crazy doc #2 neauro she said anxiety. iwas like i am not coming here no more i gotta find someone else, this is not anxiety. well i saw on a checklist that the tremors is a symptom and the jerking is too whew in black and white so i know i am not crazy. im not anxious i am a laid back type of person unless i was late for work or if my husband drives or if he drives on "E" then i have anxiety thats it. so i know anxiety. i'm on mirapex now and it helped calm that down i dunno if you could talk to your doc about that its a parkinsons med it takes about 3-4 weeks to kick in it actually took 2month for me i still shake and have some jerking but really, not like those fits like you just described that was me too. its just another option to talk with your doc about everyone is different, i forgot the word mentioned but that response right under you about the mycl...somethin or another sounded good to me. also that vitamin d but i dunno if ishould add more i atke a vitamin that has everything prenatal best thing for a woman i think. it has it all lol but a nurse actually told me its okay to do that. so theres my calcium suppliment. i dunno. i wish you the best though in finding some relief. its hard with those fits so bad i started to pull out my hair no lie i pulled some out.good thing i have short hair didnt get that much of a good grip. b~kay
  19. Chilene

    Chilene New Member

    wow... am thinking of you... this sounds pretty freaky to experience! sorry you're going through this...

    i don't have near as much to offer as some of the others have (especially with meds, as i'm allergic to every one and don't take ANY but for ibuprofin when the migraine hits)...

    but i DO know that when i first got CFS/fibro/whatever mess this is (at 30)... i was still trying to live like a healthier person... and had the muscle twitches alot more back then...

    my worst experience was signing up at a YMCA (at this point they even thought i had MS and should still push myself!)... and trying to work out with machines and small weights. HAH. (and i used to dance when healthy...)... i had twitches and spasms for for a few days... (not to the level you describe... )...

    all i know is that for me, pushing myself CAN get some of this going... you DO want to rule out MS or other things, of course... but i hope (in a good way) that you just pushed yourself too hard! and yes, see your doc asap!

    big huge soft hugs! (and MAN i want a boyfriend like that!!! keep him round!;)...

  20. justjanelle

    justjanelle New Member

    I get this when I overdo and crash.

    Like you, my muscles go hard as rocks. Then I get the horrible painful spasms that jerk your whole leg/arm/torso or whatever. And they also are repeating every so many seconds or minutes. It's always worst in whatever part I've overused the most.

    My doctors have said that muscle spasms are just a part of FM. I have muscle relaxant (Zanaflex) and take Tylenol or Naproxen for the pain. Sometimes it's enough to make them stop or at least ease up a bit. A hot bath is also good, as you found, and sometimes a heating pad helps too (But not while in the tub of course! :)

    Best wishes,

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