Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

What can cause extreme muscle stiffness?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Oberon, Feb 21, 2017.

  1. Oberon

    Oberon Senior Member

    Messages:
    185
    Likes:
    293
    Hi Everyone,

    In January of last year I had a terrible bout after pursuing methylation and since then I've had a variety of symptoms as seen in this thread: http://forums.phoenixrising.me/inde...g-legs-increased-heart-rate-depression.45167/

    I wanted to specifically ask for everyone's advice on what other than potassium and magnesium could cause extreme muscle stiffness. Since last year I keep getting these terrible bouts of muscle stiffness in my lower back similar to flank pain, stiffness in my legs and this time around I've also gotten pretty bad shoulder pain. I sometimes get tingling legs which I believe is from my back stiffness cutting off blood flow.

    So far I've trialed, Potassium 500mg as NoSalt, Magnesium 200mg Citrate, 200mg Calcium, multiple times and none of them seem to have any real effect on the stiffness when I take it.

    I believe since my methylation attack something in my body is extremely depleted and I can't figure out what it is. I've also noticed my toenails have become much more brittle and some nails have red lines at the top which is new since last year.

    Any help would be vastly appreciated!!!
     
  2. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,398
    Likes:
    24,271
    USA
    This is a long-shot but I had extreme muscle stiffness and spasms from the Anti GAD65 antibody along w/an extremely exaggerated startle reflex. It got so bad that we questioned if I had "Stiff Person Syndrome" (SPS) which can correlate with this auto-antibody but once I started high dose IVIG, all of it 100% disappeared. Have you ever been tested for GAD65?
     
    Izola and Valentijn like this.
  3. Eastman

    Eastman Senior Member

    Messages:
    281
    Likes:
    237
    Vit B1 deficiency causes many of your symptoms. But I think you are taking a B-complex.
     
  4. Victronix

    Victronix Senior Member

    Messages:
    362
    Likes:
    133
    California
    Someone asked in the other thread if you'd had your thyroid checked but you hadn't at that point. Have you tested that yet?

    I found that after stopping methylfolate, a lot of things also went haywire, and mostly they were hormonal (folate has a huge role in hormones). I finally started taking estrogen (and a small amount of testosterone and progesterone) and that made a huge huge difference for me. My sense was that once I stopped the mfolate, my hormones just tanked and didn't resurrect themselves.

    Stiff muscles are common with low estrogen, although it's possible what's going on with you has nothing to do with estrogen, etc. Still, worth checking hormones.
     
  5. lnester7

    lnester7 Seven

    Messages:
    2,394
    Likes:
    3,448
    USA
    Low potassium or magnesium does it for me.
     
  6. Kharren

    Kharren Hopeful opptomist

    Messages:
    18
    Likes:
    27
    Hermosa Beach Calfornia
    Good to know I am not the only one with muscle stiffness. I see myself now walking very differently....arms stiff neck legs etc.
     
  7. Oberon

    Oberon Senior Member

    Messages:
    185
    Likes:
    293
    That is a very interesting thing to look in to, thank you. I've always suspected it might be autoimmune related. I've been bugging my doctor for ages to send me to a Rheumatologist for a second opinion an finally convinced him to send me to one in March. I don't believe I've been tested for GAD65 so hopefully I'll be able to get it tested.

    I've actually stopped the B-Complex for a while now but I've trialed Vitamin B1 for a few days to see if it will help as both Bentofiamine and Thiamin Cobarboxylase with no luck.

    I've had my thyroid tested many times over the years and it's always been within range. Unfortunately because of my past history of all the Free hormones beign ok; I wasn't able to convince my doctor to test anything other than TSH (came back fine.) I'll probably try again later, but I don't believe it's my thyroid.

    My Testosterone is definitely on the low side which I should be seeing an endocrinologist for soon. There's always a chance it's caused by that but from what I've read it's uncommon.

    I wish it were so simple :-(. At this point I've tried Potassium Bicarbonate, Potassium Gluconate, Potassium Chloride, Magnesium Glycinate, Magnesium Citrate, Magnesium Chloride (Spray). I think I may try Epsom salts, but at this point I don't believe the stiffness is caused by either Potassium or Magnesium.
    ___________

    I'm starting to do some digging to see if maybe it's somehow related to the Urea Cycle or Ammonia.

    I do seem to get some toe pain (possibly gout) whenever I trial B12. This definitely didn't happen historically. I did have my uric acid level tested and they aren't really anywhere close to being high so I'm not sure why this is happening.

    Aside from that I'm totally baffled and will take all of your advice to see if any of it helps. Thank you everyone for all the patience and time.
     
    Last edited: Feb 23, 2017
  8. lnester7

    lnester7 Seven

    Messages:
    2,394
    Likes:
    3,448
    USA
    WHen I get this I am not gout level, I start getting toe pain when I am over 6 (I think range starts at 8?) the whole point is like I am 2 whole points away. I lower intake of protein and it gets better. I also get very bad joint pain.
    For some reason I cannot do potassium or magnesium separate, I have to load like a banana (i avoid due to allergies) or Pedialyte. If I supply one or the other I get unbalanced (My personal situation since I used to have diarrhea permanently due to colitis, that is under control now).
     
  9. Victronix

    Victronix Senior Member

    Messages:
    362
    Likes:
    133
    California
    The other thing is a comprehensive gut test from Genova Diagnostics. I get gut issues and they affect my entire body, causing bizarre muscle issues in my legs and all over.

    The things like the swallowing issues don't sound like thyroid, but a lot of the other symptoms do (brittle nails, stiff muscles, exhaustion, etc). I get TSH tests done myself, since often I will have symptoms of low or high thyroid while I'm still just within the "normal" range. They are not that expensive and it's an easy way to get one more issue checked off the list.
     
  10. maddietod

    maddietod Senior Member

    Messages:
    2,685
    Likes:
    2,428
    East Coast, USA
    I ate whole-foods vegan for 6 months, and then just now tested + fish and chicken for 2 weeks. ALL of my body aches went away on the vegan diet, and they're all back. I have no idea why this happened, but I'm back to vegan eating today.
     
  11. Oberon

    Oberon Senior Member

    Messages:
    185
    Likes:
    293
    Interesting to hear; I have been doing a bit of reading and it is possible to have acute gout attacks when your uric acid level isn't elevated. I may try lowering protein for a few days to see if it helps.

    Ahhh lucky Americans!!! In Canada we can't go and get our own tests but I guess we have other healthcare perks. My TSH is pretty well always normal if anything it would be closer to the hyperthyroid range if I went by TSH. I do want to get my Free T's tested again which I'll try again to convince my doctor to do next time I see him.

    That's pretty interesting. Let me know if the aches go away again and hopefully you feel better soon.

    Thank you everyone for all of the advice.
     

See more popular forum discussions.

Share This Page