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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Soft tissue injuries and ME

Discussion in 'General ME/CFS Discussion' started by AndyPandy, Aug 19, 2016.

  1. AndyPandy

    AndyPandy Making the most of it

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    After 5 years of ME (a good deal of it bedridden) my muscles are weak. I used to be a fit, active, physically strong woman but those days are long gone. Now I have muscle wasting, weakness and neuropathy.

    This week I have badly strained muscles in my right glute and hip area. This happened simply because I put weight on my right leg getting out of the car. No tricky awkward moves, just weight bearing.

    I am now in quite a bit of pain and walking is extremely difficult. I'm hobbling and limping badly on top of my usual ME compromised gait.

    I'm planning to go to the physio. No doubt he will recommend strengthening exercises! Obviously I'll do what I can but with this illness it's a catch 22 situation.

    Anyone else finding that they are more vulnerable to soft tissue injuries after years of ME?

    Best wishes Andy
     
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  2. BruceInOz

    BruceInOz Senior Member

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    In the last six years (ME for nearly 22 years) I've had tennis elbow, trigger thumb (fixed with surgery) and bursitis in my shoulder. Physio for my shoulder actually made it worse - maybe I should have exercised more moderately rather than going for the most I could manage without worsening my ME symptoms. Having so many soft tissue injuries resulting from very minor strains has made me wonder if this illness makes is more susceptible to them or if it's just a consequence of being sedentary.

    This is my first post! I finally got around to signing up after lurking here for nearly a year!
     
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  3. AndyPandy

    AndyPandy Making the most of it

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    Welcome @BruceInOz!

    I had 2 frozen shoulders when I first became ill and a history of tennis elbow and RSI type problems.

    A minimal amount of repetitive activity causes me problems these days.
     
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  4. taniaaust1

    taniaaust1

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    My tendons tear easily due to this illness - a policeman sticking my arm behind my back torn a tendon, reaching out to turn on a power switch torn tendon, the latest was I just woke up with a torn tendon.... tore it in my sleep. Dr thought it must of been bursitis and said "you wouldnt have a torn tendon" seeing it happened when I was sleep but scan showed otherwise. So I can tear tendons while just in bed.

    and then I dont heal right (Ive had two frozen shoulders with this). A specialist due to the age I was then this first started happening to me.. in my 30s (I did have ME/CFS at the time) believed it was autoimmune related in some way. He says he sees this in diabetic patients of that age but i wasnt diabetic when I first started to get all this.

    I believe our own bodies are attacking us in some way and its more of an issue then just us being sedentary.

    On the subject of weakness thing. I've had a horrific realisation this week. I'd brought some things which shoppping bags go onto to hold and carry them easier. I couldnt get the devices open properly no matter how hard I tried to squeeze it and blamed the from china mail order product for being faulty so was planning to send back.

    When my mum was here a few days ago, I was telling her about all the faulty stuff Ive been ending up buying online so she tried one. To my shock she was able to open them without problems. This was such a shock when I saw my mother could squeeze these open as my mother is on disability for her hands and wrists due to RSI, doing things with her hands hurt her, there is a lot of things she cant do with her hands (she cant even do up buttons).

    My hand strength is obviously weaker then hers!! :( Before now I hadnt realised my hands were weak and just thought I had neurological issues which cause me to drop things.
     
    Last edited: Aug 19, 2016
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  5. belize44

    belize44 Senior Member

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    I have strained tendons to an actual injury just by waking up and stretching my body in preparation to getting out of bed, I have also injured muscles by swiping at something with a sponge in a sporadic attempt housecleaning. I have subluxed my back by reaching for a dish on a somewhat high shelf. Yes, it is true that my muscles are de-conditioned and very prone to injury. I have given up trying to address this with PT, since they exercises they recommend are usually more suited to an at least halfway healthy person, not a person who is mostly housebound, if not bed bound.
     
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  6. daisybell

    daisybell Senior Member

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    @AndyPandy I had frozen shoulders for several weeks out of the blue long before I became ill - so I was interested in your story. I have also had problems with my hips, and I once dislocated my thumb putting the steering lock on my car!

    I have to be careful now as a sudden or more forceful muscle contraction can easily lead to a pulled muscle. I've done that a number of times - and sometimes I find I've done it without knowing how! I've never been bed-bound although I've been close to being completely housebound, so I'm not really inactive. But my muscles do not respond to activity in anything like the way they used to when I was well. Now I can strain them, get severe cramp etc very easily... Something in the way the muscle fibres respond is abnormal I know.
     
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  7. justy

    justy Senior Member

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    sorry you are suffering andy - like others I have strained things quite badly doing normal activities like stretching in bed - its really horrible when you have been fit and healthy and strong.

    Sending you some gentle hugs.
     
  8. PhoenixDown

    PhoenixDown Senior Member

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    Injuries are my main symptom with M.E they are so severe that I'm bed bound, can't even get in to a wheelchair without being lifted. It's like I have brittle muscle disease.

    Here's a thread I made on it: http://forums.phoenixrising.me/index.php?threads/describe-your-me-cfs.42358/

    My family and the medical profession don't believe me, they either think it's psychosomatic or exercise phobia. I've been accused of somatizing by more than one psychiatrist (they accept this diagnosis without any evidence), which is a very dangerous diagnosis because it ignores the permanent damage I can do to my body.
     
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  9. taniaaust1

    taniaaust1

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    there is something else Ive experienced which may well be some how related to us getting injured.

    I've noticed a couple of times that my bodies flexiblity altered for no reason at all. Ive gone through periods where my body is more stiff, my ligaments etc .. but then can suddenly have a period where Ive lost that stiffness and are more flexible. This something I only started to notice last year. Something in my body is shifting which is causing this.

    I also noticed something else weird a while back (before I'd torn my tendon again) when my old friend suddenly pulled on my arm to get my attention. The tendon jarred in the movement as it didnt just stretch with my arm even though my arm wasnt being extended nowhere far enough to reach its limit. Its like the tendon suddenly contacted at sudden movement at the pull of my friend rather then just went with movement of arm. I was almost injured (it hurt me at tendon like level)
     
    Last edited: Aug 21, 2016
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  10. belize44

    belize44 Senior Member

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    This is also why I get frustrated when health care professionals try to get me to do "gentle stretches." They can't seem to understand that any kind of stretches however gentle they may be, can only end in pain. It seems to encourage lactic acid build up in the muscles, or else muscle suddenly get hyper mobile and over stretch! I have been trying Tai Chi and so far it has not caused any extra pain, so I'm keeping my fingers crossed!
     
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  11. AndyPandy

    AndyPandy Making the most of it

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    So I went to the physiotherapist and she has come up with a tentative diagnosis of greater trochanteric pain syndrome (trochanteric bursitis and gluteal tendonitis/tendinosis).

    It can take 6 to 12 months to get better! :eek:

    The great news about the visit was that she was an experienced older woman who knew about ME/CFS. She was sympathetic and sensible and recognised that any corrective exercise suggestions needed to take into account my limitations. She said ME/CFS is a horrible illness.

    It is such a relief to find a health care practitioner who understands. A bonus that she is in a nearby town as our options are limited in country areas. :)
     
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  12. Cog71

    Cog71

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    I'm horrified to hear this Phoenix. Just horrified and sad and aghast. That the medical profession doesn't believe you doesn't surprise me - it's taken me 6 years to find doctors who do. But your family?? Surely they should be on your side? Support you and believe what you are telling them since they are your family and they know you better than anyone?

    I'm so sorry and wish I could do something to help.
     
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  13. taniaaust1

    taniaaust1

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    belize, I used to do Tai Chi (back before I got the OI with all this). I had to give it up as not long after I got ME, I suddenly developed a big knot in my back during a Tai Chi session.

    It was so bad that it hurt to move in certain ways then for about a year after as the knot which happened didnt just go away. (I had weekly massage sessions on this knot for about a year trying to get rid of it, each one just helped a tiny bit on it).

    I'd been doing Tai Chi for several years before I got ME with no issues at all. (then I also had to give up my yoga I'd been doing for years as I was no longer able to balance and kept falling during it). I want to just roll my eyes when I hear people suggesting tai chi and yoga for ME people.
     
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  14. belize44

    belize44 Senior Member

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    I hear you, Taniaaust! I do Tai Chi with the greatest of caution, because I have injured myself trying to do yoga, too. I was once trying this squatting position, and lost my balance, fell over sideways and sprained my ankle. I am so afraid to try things, but my body keeps wanting exercise! It is a tough call...:cautious:
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    That is great news, Andy, and am so glad you found an experienced clinician who can hopefully help you with this! I have a lot of soft tissue injuries, too, especially to my right arm, shoulder, and right side of my neck and am at the point that I do not believe that they can ever heal and the slightest wrong movement just keeps re-injuring them.

    I am curious for everyone in the thread who easily gets these injuries, how many of you took either a fluoroquinolone antibiotic or a Statin in the past?
     
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  16. AndyPandy

    AndyPandy Making the most of it

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    I took statins just prior to ME developing. I had soft tissue injuries before this but I am much more prone to getting them since ME.
     
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  17. belize44

    belize44 Senior Member

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    I took them back in '03, and again in 2010. Interesting observation, Gingergrrl!
     
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  18. taniaaust1

    taniaaust1

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    Its akin to telling drunk people to go and do yoga for exercise.
     
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  19. BruceInOz

    BruceInOz Senior Member

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    I have never taken statins and am fairly sure I have not had fluoroquinolone either.
     
  20. Jenny

    Jenny Senior Member

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    It's odd that one doesn't hear more of soft tissue injuries as part of ME. Perhaps they are more likely to be fibromyalgia symptoms. The strains and sprains I've had literally take years to improve and still flare up occasionally. Some are really minor - someone shook my hand a bit too firmly in 2007 and it's only in the last couple of years that my hand doesn't hurt.

    When I'm in a ME relapse I get random excruciating pain in various parts of my body - usually hands and feet. Often they're the sites of previous injury , but sometimes not. In my last relapse my left hand became so painful that even a very tiny movement, like moving my thumb a millimetre, would set it off and I'd be in agony for an hour or so.

    I've never taken statins or fluoroquinolone.
     
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