A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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Question from patient

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by Dolphin, Feb 26, 2017.

  1. Dolphin

    Dolphin Senior Member

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    I was asked to post this somebody:
     
  2. Oberon

    Oberon Senior Member

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    Maybe L-Glutamine (probably already in the Whey) or D-Ribose might help? I think anything thats known to boost ATP or muscle recovery is worth trying. Others will probably have much greater input than I can offer on these.

    It's also possible a muscle relaxant may at least help alleviate some of the pain.
     
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  3. alex3619

    alex3619 Senior Member

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    I have a long history of muscle issues related to ME, though not this bad in the abs. I have never found an effective treatment other than time and rest. The need for resting the affected muscle may continue for years, not weeks. I am still trying to recover from muscle injuries in the 80s. I found that static strain on muscles is much worse than active strain, so posture is critical. If effective rest positions can be found they may help.

    Just today I have had more problems with a muscle in my upper right arm that I damaged from overuse in the 80s. The weakness is always there and I always have to be careful. A year of physio in the late 80s did nothing to help.

    I can say my muscle issues improved with time. I am thinking full recovery might be impossible until my ME is in remission.

    For local relief I found topical menthol rubs slightly helpful. Heat and cold packs have limited effect, but menthol muscle rubs can be carried around and used as needed. They do not penetrate very far into the muscle however.
     
    Last edited: Feb 27, 2017
  4. Webdog

    Webdog Senior Member

    While my symptoms are milder, I find they invariably worsen when I am cold or chilled. Staying comfortably warm at all times helps relieve my abdominal and breathing issues.

    I would add that my breathing issues have been substantially relieved since starting low-dose Naltrexone (9mg at bedtime) a year ago. But I continue to have episodic abdominal strain issues, which began with myclonic jerks 38 years ago.

    Doctors simply do not appreciate how distressing and painful these conditions can be when they persist. I hope this person finds some symptom relief.
     
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  5. Valentijn

    Valentijn Senior Member

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    More rest. A low dose of metformin totaled my shoulders 30 days ago. They've only really recovered in the past week.

    The only other thing I can think of is a bit of electrolytes. And maybe coQ10.
     
  6. PatJ

    PatJ far and free I gaze

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    A PEMF device might help. From Dr. Pawluk's PEMF information site:
    PEMF therapy and sport injury recovery:
    The mention of ATP is interesting. Maybe the patient is having some kind severe localized lack of ATP in the abdominal muscles?

    Also from the article:
    So maybe PEMF would help to speed muscle recovery, although the effect on a PWME may not be as expected.
     
  7. hellytheelephant

    hellytheelephant Senior Member

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    Sounds very miserable for them, but 1.5 weeks in ME recovery terms, is not that long for someone severely affected.
    Agree about the muscle relaxant if GP will give it.
    Agree about keeping warm- my life has been transformed since someone gave me an electric heat pad- which is great as you just switch it on and off as you need-without getting up to make a hottie.
     
    MEMum likes this.
  8. lnester7

    lnester7 Seven

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    I would say to get tested to make sure there is no muscle damage (CPK i think is called?) , also test for mg and potasium, then if that is clear l-glutamine is my go to for muscle pain.
     

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