The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Muscle pain

Discussion in 'Pain and Inflammation' started by Azriel, Aug 25, 2017.

  1. Azriel

    Azriel

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    How many of you have muscle weakness and muscle pain where it feels like you lifted weights and your muscles are sore? Is it inflammation, lactic acid build up, or what? and does anything work to ease the pain?

    The pain level seems to coincide with my Fatigue level too.

    Also, there are certain tender spots in the muscles like knots that feel good but hurt when I have them massaged. Isn't that more like Fibromyalgia? I hope I don't have that too
     
    Last edited: Oct 22, 2017
  2. mirshine

    mirshine Senior Member

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    I have lots of muscle and nerve pain.

    So far rest is the only thing I've found to not make it worse.
     
  3. Manganus

    Manganus Senior Member

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    My (virtually) cronical aches, which were my companions for many years, did finally abade after some years of taking Ketoprofen and after living over a year much closer to the equator (at the latitude of Florida).

    I can't say for sure how much either of the climate/sun or the Ketoprofen contributed.

    During the first ~10 years, I got pains after (mild) physical exertion. They seemed to originate either from the membrane that covers the outer surface of muscles and/or bones, alternatively from the muscular tissue. At that time I was fairly convinced the aches were the result of some kind of autoimmunity.

    The role of lactic acid seemed to be minor.

    Later I got never-disappearing generalised aches from all over the body.
    They could get worse or milder. But it took years and years before they left.
    Diklofenac and large doses of ordinary low-cost painkillers did help somewhat.
    High doses of SSRI-medications might have helped. Maybe! But I'm far from sure.

    I was treated by a rheumatologist who couldn't diagnose any known illness, although my pains were obvious and unquestionable, tested for fibromyalgia and some other diseases.

    Those generalised aches varied, more or less synchronised with fatigue and brain fog.
     
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  4. valentinelynx

    valentinelynx Senior Member

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    I have muscle pain. Much less than I used to. I keep it under control with massage (Thai massage in particular makes a world of difference for me). The type of pain you are describing, with tender points is typical of myofascial pain, which is different from fibromyalgia, though often confused. Before I figured this out and discovered that Thai massage would keep the muscle knots at bay if I get it every 2 weeks, I had a lot of this kind of pain. Now I mostly just have other kinds of pain... but getting rid of any kind of pain is a benefit!

    For massage you need to find a sensitive, sensible, intuitive therapist who can help get rid of the tension bands and trigger points without hurting you more. They are out there, and they are treasures!
     
  5. PatJ

    PatJ far and free I gaze

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    If I push it too much I can get 'coat hanger pain' across my shoulders and upper back. It isn't related to muscle use, and rubbing the muscles doesn't help, so I suspect inflammation.

    Someone here on PR (I don't remember who,) uses proteolytic enzymes to relieve pain. LDN, and anti-inflammatories such as flax oil and turmeric may also be useful if inflammation is the cause of your pain. There are many natural anti-inflammatories available.
     
  6. RYO

    RYO Senior Member

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    Muscle pain for me has been very difficult to manage. It is very prominent in my legs\hips (postural muscles). I have tried many treatments with little success (too many to list).
     
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  7. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I've had this type of pain in my calves (myofascial pain). I did find a massage therapist at one time who took her thumbs and separated the muscle fibers in the knot, and then repeated that by working on another knot. For me it was one of those "pains that hurt so good." I've had many massages and she always stood out in my mind as someone who actually made me better for the long term.

    Now I'm curious about Thai massage. I will have to see if anyone at Massage Envy does that.

    I learned the most about myofascial pain from books by Dr. Devin Starlanyl. She's a rheumatologist who has fibromyalgia. I don't recall which book was the best, but here are some that she's written:
    https://www.amazon.com/s/ref=nb_sb_...d=1YABV65YF90UB&rh=n:283155,k:devin starlanyl

    Myofascial pain brochure:
    http://www.fmcmpd.org/TriggerPtBrochure.pdf

    Devin Starlanyl's website where she's posted a lot of information - see the links on the left side of the page:
    http://www.fmcmpd.org/

    Interview:
    http://www.prohealth.com/library/showarticle.cfm?libid=21326
     
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  8. Dechi

    Dechi Senior Member

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    Yes, I have permanent muscle weakness. Just chewing is hard, some days. Writing also. Typing at the computer is okay though. But writing with a pen is hard. I used to do those adult color books (forgot the name) for a while but I stopped, it was hurting my finger muscles too much.
     
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  9. bspg

    bspg Plant Queen

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    @Azriel I used to have this type of pain constantly but now it's only like that sometimes. I wish I could tell you why it's different now but I have no idea.
     
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  10. bspg

    bspg Plant Queen

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    I have heard people discuss the use of sodium bicarbonate for muscle pain on the forum. It might be worth trying to see if it helps.
     
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  11. pattismith

    pattismith Senior Member

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    hi Azriel,
    I too had muscle weakness, muscle pains, heavy arms and legs, twitching muscles, muscle contractions, etc.

    The more efficient supplements that works for these conditions for me are:

    Calcium, vitamine D, magnesium, high benfotiamin dose, (+ other B vitamins)
     
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  12. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I have tender points all over every part of my body, including my calves. And then there ARE the knots (lumps) too. I also have fibromyalgia in addition to ME/CFS.
     
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  13. bspg

    bspg Plant Queen

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    I've often wondered about this as my entire body is tender points, with certain areas much worse than others (hips, sacrum). Those areas can barely be touched without me screaming in pain. I have a dx of fibro but I really believe it's myofascial pain syndrome. I wonder how I could find a doctor who knows the difference...
     
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  14. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Fibromyalgia and myofascial pain syndrome often coexist. A rheumatologist would be the best kind of doctor to tell if you have myofascial pain syndrome.

    http://healthsociety.info/myofascial-pain-syndrome-mps-and-fibromyalgia/

    My regular GP diagnosed my fibromyalgia. I don't have pain in my joints - all of the pain is in all of my muscles. Treatments are warm baths, stretching, exercising (if you don't have ME/CFS) and medications such as pregabalin (Lyrica) and duloxetine (Cymbalta).
     
    Last edited: Aug 30, 2017
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  15. alice71

    alice71

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    I have recently developed the most debilitating pain, cramps, twitches and burning ache in my thigh muscles. All the individusl muscles are so weak and painful that i am now unable to stand or walk and am wheelchair bound. I've had M.E. for 4 years and never had any leg problems. I also was diagnosed with fibro but that pain is nothing like this. It's really really frightening me and I'm too scared to speak to my doctor as he is so uncaring and i always get the silence on the phone (im unable to visit the surgery) and then just a pathetic answer like i need to rest more! All i do is rest and now I'm immobile!!!

    Please if anyone has experienced leg problems to the point of it making you immobile could you message me?

    Many thanks
     
  16. pattismith

    pattismith Senior Member

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    Hi @alice71 , I had the same kind of muscles problems. In my case, it was associatedwith blood lactates peaks. I take a mito Cocktail for several months now, it helps a lot!
     
    Last edited: Sep 7, 2017
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  17. alice71

    alice71

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    Hi and thanks so much pattismith, its so unbelievably reassuring to know this is similar to others experiences with M.E. if you dont mind me asking, what do you mean by blood lactates and how did you find that out? Also, what mito cocktail do you have, is that mitochondria by the way?
     
  18. pattismith

    pattismith Senior Member

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    Several PR members experimented testing their blood lactates levels (fasting, after exercise, after eating...) and found anomalies:

    http://forums.phoenixrising.me/inde...-study-to-measure-blood-lactate-levels.40152/

    (It means buying a blood lactates tester)

    One cause of elevated blood lactates can be a failure of mitochondria function, so supplements that help this function may help. Here more about mito cocktail:


    http://www.mitoaction.org/blog/mito-supplement-therapy

    you will find on PR all the experimentations members had with all these supplements (doses, forms, etc).:thumbsup:
     
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  19. Mollymolly

    Mollymolly

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    I have muscles pain in my legs ,twitching, cramping and little swollen from inflammation, walking stair is painful I feel like I ran a marathon every day , I do take vimivo- for inflammation and also pain killers helped a lot , just starded the med.
     

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