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Please help with nighttime full-body muscle spams/cramps/fits?!

Discussion in 'Sleep' started by EMilo, Dec 4, 2013.

  1. EMilo

    EMilo Elizabethmilo.com

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    Hi everyone,

    I could sure use some big brains to help me with this issue. I don't know how to describe what happens to me at night, but I will try: I wake up multiple times (5-20) in a full-body FLEX. All my muscles are tense, rigid and hard. My back is arched, my arms are fully tensed, my hands are gripped in fists and -the worst- my jaw is clamped down so tightly that it takes monumental effort and concentration to release it. I have broken teeth because of this - even though I wear a night guard. I have thrown my neck out so badly from these spasms, that I have been immobilized for days (I have a history of hypermobility, degenerative discs and acute sprains in my cervical spine).

    This morning, my jaw aches, my head aches, my back is tweaked, my neck is sore, and my teeth are sore and feel almost loose - like there was immense pressure exerted on them for a long time.

    My only meds are T3 and T4, which I took years before ME. I was off all supplements for three months recently and, stupidly didn't notice if I had any reprieve from this issue (I do think it was better, though). Now I'm back on B vitamins, zinc, magnesium and a new Metagenics shake with a ton of stuff in it - but these spasms were definitely happening long before I ever took it.

    Does anyone have any idea what could be causing it or what could help it? I would really appreciate the help before I lose all my teeth, pop my shoulders out of joint or break my neck. Thank you!
  2. lnester7

    lnester7 Seven

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    I get a lot of muscle pain when I wake up in the middle of the night, my body feels tight and painful, Never figured what it is.
    EMilo likes this.
  3. PDXhausted

    PDXhausted Senior Member

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    It only happens while you're asleep? Has it ever happened during the day?

    What is your diet like it terms of calcium?

    And have you ever looked into stiff person syndrome?

    I had a year of very intense muscle spasms following a tetanus shot, but I never found anything that helped them, and they happened all day and night, so different than what you're seeing. I still occasionally get them, but not as bad. I'm starting to wonder if calcium (like after eating dairy) triggers them, but I haven't figured it out yet. I think with stiff person syndrome it is something to do with GABA, but its been a while since I've researched it.

    It seems like alot of people get relief with magnesium for muscle cramps, but unfortunately magnesium gives me a headache, so I've never gotten very far with it. I think low iron might be another one associated with nighttime leg cramps, but that may be different than what you're seeing too.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    This sounds horrible. I have had spasms (when at my worst), cramps and tooth damage, but mine appear to have been due to mineral deficiencies. The really bad spasms, cramps and tremor occurred when I had dangerously-low blood sodium, and I also suffered a fracture from a minor fall. Since increasing my intake of salt and other minerals I have been much better.

    Have you had your blood minerals checked?
  5. minkeygirl

    minkeygirl Senior Member

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    I would consider muscle relaxants but this sounds severe enough you should probably see a doc if you can find one who has a clue.

    Good luck
    taniaaust1 likes this.
  6. Crux

    Crux Senior Member

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    Hi;

    I would guess there are several things going on.

    - Some of the cramping and spasms could be from an increased need for Potassium after beginning the B vitamins again.

    - From reading over some of your past symptoms, such as vertigo and tinnitus, maybe more B12 is needed. (B12 has been my most effective supp. for migraines.)

    - Another possibility is low copper. I don't know how much zinc you take, or if copper is in the supplement, but zinc can trump copper.

    Copper is involved with collagen formation, so it strengthens joints and discs. When copper is low, there can be dizziness too. ( I wonder if this is why symptoms can be worse at menses. When estrogen drops, copper may also drop.)

    Copper is very powerful, so, a small amount can go a long way. 1-2 mgs. or less.

    Personally, I found I needed a little more copper when I restarted thyroid meds.

    http://glutenfreeworks.com/blog/201...opper-deficiency-in-celiac-disease/#more-2879
  7. beaverfury

    beaverfury beaverfury

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    Do you have lyme or other coinfections? Just one possibility. My muscles have hammered me in the past. Especially neck, shoulders and chest.

    Symptom list for lyme http://www.anapsid.org/lyme/symptoms/tbi-symptoms.html
  8. S.A.

    S.A.

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    Have you ever heard of nocturnal epilepsy or sleep siezures? You should google it. I couldn't find it right off hand but (I think) Ohio University sleep studies department used to have video of people having mild to severe sleep seizures. I used to have a milder form and when my doctor first suggested it, I researched it. Your description sounds very much like one of the forms of it. For me, they stopped when I went off yeast, dairy, gluten and soy. In fact, at first, if I cheated on the diet, I would have some sort of neurological sleep event of either muscle spasm, screaming, or dream hallucinations where my dreamstate and wake state blended and my dreams would be projected into my bedroom. (It was really pretty terrifying before I knew what was going on.) After being off the foods for four+ years and working on my methylation (b12, folate etc.), I can cheat every once in great while without incidence. I haven't had a sleep event in three years.

    But that's me. The answer came by process of elimination. Noctunal epilepsy can be caused by several different things, including brain tumors so you don't want to just go off foods and hope for the best. I would research noctural epilepsy thoroughly and try to see a doctor who knows a lot about this particular form of it. (The 1st doc i saw only knew about narcolepsy and he wasn't worth the gas money to drive over.) If you suspect food allergy, I highly recommend eating a ton of that kind of food the night you take the sleep study. I had half a medium pizza and my body jerked all night long. ;)

    Best of luck! I know how frightening it was for me and I hope you can find help.
    Last edited: Dec 4, 2013
    justy likes this.
  9. Valentijn

    Valentijn Activity Level: 3

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    @EMilo - That's not a typical ME/CFS symptom, and you should definitely have a doctor looking into it. It could be seizures or another serious neurological problem which requires treatment.
    S.A., SOC and EMilo like this.
  10. taniaaust1

    taniaaust1 Senior Member

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    enough to break teeth..that's severe!! .. and as Valentijn said not a normal ME/CFS symptom. I think it sounds like you have noctural seizures of some kind happening (so it could be quite dangerous) and hence you certainly should be seeking out a dr for this. Keep looking till you find one who takes your issue seriously.

    Maybe even try to get a sleep study done in which you will be observed during the night.
    S.A., EMilo and justy like this.
  11. EMilo

    EMilo Elizabethmilo.com

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    @PDXhausted, thanks for the reply! Yes, only when I sleep and not every night. I don't get a lot of calcium (can't tolerate supplements and don't eat dairy) and I had osteopenia on the edge of -porosis before I even came down with ME and stopped moving. Scares me!
    Never heard of stiff person syndrome, but just looked it up and, surprise surprise, it is associated with autoimmune thyroiditis and vitiligo, both of which I have. Wow. I'll ask for the GAD blood test. Thank you!
  12. EMilo

    EMilo Elizabethmilo.com

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    @MeSci , I thought of that and asked for blood tests in the summer for general nutrition levels and my doc said I was fine. I don't trust the reference ranges, but my salt was ok and so was my potassium (a bit low).
    MeSci likes this.
  13. EMilo

    EMilo Elizabethmilo.com

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    @Crux , Wow, thank you for looking into my symptoms to help me! How do I supplement potassium? Any preferred ways that people have?

    I take the Thorne B complex #12 which has loads of B12 in it. My blood test showed levels higher that the range. I know everyone says to not pay attention to the tests and take a certain kind of B12, but I haven't gotten that far in my research to know what to do.

    I have thought about copper, I take 15mg of zinc a day and my blood tests showed ok copper. I will supplement it a bit, though, I think to be safe. I started thyroid meds so many years ago and never took a supplement or changed my diet, I just didn't know anything. Extra copper with thyroid meds is interesting. Thank you!
  14. EMilo

    EMilo Elizabethmilo.com

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    Not that I know of, but of course those tests aren't that accurate.
  15. EMilo

    EMilo Elizabethmilo.com

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    @S.A. , I have not looked into seizures! I will now. I haven't eaten yeast, dairy, gluten or soy (as well as a bunch of other things) in many months and nothing has changed in my symptoms, either with sleep or ME in general. I'm pretty bad at correlating diet to symptoms, though. I always assume that if I'm feeling terrible it is because of sleep problems or over-exertion. That is so interesting about the pizza! Maybe I should start doing experiments on myself. I am on a very restricted diet right now and am just starting a bunch of challenges.
    Thank you so much for the reply!
    S.A. likes this.
  16. EMilo

    EMilo Elizabethmilo.com

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    Dammit! I really don't want to see more doctors!!! Everything is so unpredictable. I get terrible blood sugar crashes and my doc says they have to draw blood when I'm in the middle of one, but how do I get to the lab? Same with this problem, I could have 10 sleep studies and it probably wouldn't happen and then I'd go home and have it happen 3 nights in a row. Gah!
  17. Crux

    Crux Senior Member

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    Hi EMilo;

    As you can see, there are many of us who are happy to try and figure out what may be causing these issues; and you are very welcome!

    For the potassium, if it's low, there can be cramping and spasms. I take potassium gluconate, and buy the powder to add to water. There are other compounds available, depending on needs or preference.
    http://www.luckyvitamin.com/p-4125-now-foods-potassium-gluconate-powder-1-lb?redirect=1

    Yes, testing can be confusing in ways; the B12 serum test, if it's low, may be showing deficiency. If it's high, it may indicate that the B12 is stuck in the serum, unable to be transported into tissues, nerves, and the spinal fluid.
    Since I don't have good transport, and I seem to have some B12 receptor problems, I'm stuck with taking alot of the sublinguals. ( I've also had vertigo and tinnitus in the past.)

    As for the copper, nearly all of the tests concerning its effect on thyroid hormones have been done on animals, so I can only describe my personal experience. I also take 15mg. of zinc, and have been very happy with it. Now, I've added 1mg. of copper daily. ( I was having some symptoms of copper deficiency, untested, but dizziness was one of them. )

    I've read that serum zinc and copper tests aren't very accurate, but, they have been used in most all of the studies.

    I would guess that low copper is not an issue for you. Good News!
    S.A. likes this.
  18. S.A.

    S.A.

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    Here's a few links.
    http://www.epilepsy.org.au/about-ep...cturnal-seizures-during-sleep?noredirect=true

    www.youtube.com/watch?v=RxvKldtkoPY

    www.youtube.com/watch?v=3KtSHN4CbSk

    http://www.epilepsysociety.org.uk/epileptic-seizures#.UqJvrajnaAg


    I can definitely understand why you wouldn't want to see a doctor, especially since doctors can act like your crazy if you have anything that doesn't fall under their specialty, but remember you are the consumer. You can choose so you can be choosy. Research both the condition and the potential doc. Also, gather as much evidence as you can. If you video tape yourself several nights in a row having multiple seizures over several hours, your physician may not watch all of it, but if he refuses to watch or refuses to believe that it's real, your response will be: "Really because I believe this video will hold up in a malpractice suit. Furthermore, everyone in my family now has a copy and they have seen me in this state personally and are very worried. If this turns out to be a serious issue like a brain tumor, neurological degeneration, or food allergy which ends up killing me, they will hold you responsible." You don't actually have to have that kind of family support, you just have to make youor doc belive that you do. It also helps to hand the doc a cd copy with a label that includes "cc: name of a local malpractice attorney." I used to work in a law office and I've used this trick several times to be taken seriously.

    I don't say all of that because I hate doctors. I actually have several amazing docs I like a lot, but there are a lot of lazy short sighted docs out there who don't want to know about anything that can't be cured with an antibiotic or antidepressant. The key is to find a doc who people recommend and who specifically treats what you think is wrong. If this is a form of epilepsy, it could definitely be helped by methylation protocols and diet, but there are so many things and possible causes that realy need to be monitored or at the ver least investigated by a doc.

    I wish you strength and courage...and a good nights sleep.
    EMilo and Valentijn like this.
  19. S.A.

    S.A.

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    More links

    http://ghr.nlm.nih.gov/condition/autosomal-dominant-nocturnal-frontal-lobe-epilepsy

    The below link is a really good forum tho posts a little old. Many relate having clusters of seizures, then periods without seizures. And one explained a genetic form of it.

    http://www.epilepsy.com/node/970554

    Also, keep exploring what the people of this site (Phoenix Rising, I mean) are saying about methylation and b12. B12 deficiency in the brain or spinal fluid (which can be unrelated to blood levels) can cause damage in the brain, nerve tissues or spinal column. The damage can be progressive if left untreated. It can also partially/potentially permanent. If the damage is irreversible, epilepsy drugs may be warranted, but you'll want to make sure you're put on an epilepsy drug that does not further deplete or block B12. Drugs like this will stop the seizures but damage will continue to occur and you'll still have a host of other B12 symptoms. Here's a link to these meds:

    http://umm.edu/health/medical/altme...inks/drugs-that-deplete-vitamin-b9-folic-acid

    Hope this helps.
    Last edited: Dec 7, 2013
    EMilo likes this.

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