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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Poll: what's your pattern of muscle weakness?

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by Jenny TipsforME, Apr 8, 2017.

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What is your pattern of muscle weakness?

  1. Weak lower half of limbs, eg hands find it hard to hold something

    16 vote(s)
    24.6%
  2. No weakness at all

    7 vote(s)
    10.8%
  3. Weak upper half of limbs eg difficulty climbing stairs or lifting up a hairdryer

    26 vote(s)
    40.0%
  4. Only weakness after exertion, but it is all over

    15 vote(s)
    23.1%
  5. All over weakness most of the time

    30 vote(s)
    46.2%
  6. Weakness on one side of the body

    4 vote(s)
    6.2%
  7. Symmetrical weakness (you can select several options on this poll)

    15 vote(s)
    23.1%
Multiple votes are allowed.
  1. Jenny TipsforME

    Jenny TipsforME Senior Member

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    On my last neurology appointment I showed a pattern of muscle weakness. It would be useful to know other people's pattern before my next appointment.

    I already have a ME diagnosis so if my pattern is fairly typical this maybe doesn't add much. Dr Google doesn't bring up CFS or ME though and does suggest other diagnoses (for this particular issue, I do otherwise fit classic ME). I don't want my doctor to be mistakenly diverted if it is fairly typical, or (more likely?) have nonME symptoms dismissed as ME.

    Please answer this poll, even if you don't have any weakness. I want to get a general sense of people with ME's experience, there appears to be very little official research on this.

    Also please don't be alarmed by other possible diagnoses if you Google too. The point is I don't know what is the typical pattern in ME.
     
    aimossy likes this.
  2. Dechi

    Dechi Senior Member

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    I have generalized muscle weakness, 24/7. My EMG have shown no muscular abnormalities whatsoever. So the problem is not with the muscles themselves. It's got to be in the cells.
     
    Gingergrrl, Diwi9 and Jenny TipsforME like this.
  3. Snow Leopard

    Snow Leopard Hibernating

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    My initial onset was severe weakness in both calf muscles (acute flacid paralysis), but these days weakness seems to be evenly distributed around my body and is directly related to level of fatigue. I have done the 2 day VO2MAX/CPET study and my muscles just didn't have the same force on the second day, and my ventilatory threshold and VO2MAX was substantially lower on the second day.

    An example is driving, my usual muscle memory for changing gears in a muscle car fails when I'm more fatigued (due to prior exertion), leading to lack of clutching, gears crunching etc despite my brain trying to send the same signal it has done many thousands of times before.
     
    Jenny TipsforME likes this.
  4. lansbergen

    lansbergen Senior Member

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    Worse during flares in the direction of the perifere from the spots I feel the inflammation.
     
    Jenny TipsforME likes this.
  5. Neunistiva

    Neunistiva Senior Member

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    I have severe ME/CFS but never felt muscle weakness was my problem. I do have muscle fatigability, after repeating same the movement several times
     
    lafarfelue, Mel9, TigerLilea and 2 others like this.
  6. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @Dechi @iansbergen @Snow Leopard @Neunistiva thanks. I'm going to hold back on saying my pattern until more people have responded. It's not the same as any of yours though, so this might be interesting.
     
    arewenearlythereyet and Dechi like this.
  7. EJaneS

    EJaneS

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    I have a definite pattern of weakness in upper arms & thighs so I lift onjects with the muscles in my forearms & when driving I use pedals "from the ankles" keeping quads still. I can't maintain an action e.g. Can"t hold a drink without having to put it down. Resting it e.g. on the arm of a chair doesn't work as hands can't grip for prolonged period.
    From rest I can produce a burst of energy but it fizzles out rapidly. Usually describe this as "I can mive a wardrobe but can't hold a cup of tea".
     
    Chezboo, aimossy and Jenny TipsforME like this.
  8. EJaneS

    EJaneS

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  9. EJaneS

    EJaneS

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    I recall seeing a swimmer talking about fast twitch & slow twitch muscle. I wonder if I still have a bit of fast twitch function but have lost slow twitch.
     
    Jenny TipsforME likes this.
  10. dangermouse

    dangermouse Senior Member

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    My wrists and hands are affected. My upper arms and thighs are also affected. Mostly to some degree all the time, worse during PEM.
     
    Jenny TipsforME likes this.
  11. Valentijn

    Valentijn The Diabolic Logic

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    Anything can get tired out if I use it too much, but it's worse for my proximal muscles (upper half of limbs). It's especially noticeable in my thighs and shoulders, and I even had a major thigh muscle stop working for about an hour after overuse.
     
    Mel9, MeSci, Jenny TipsforME and 2 others like this.
  12. tinacarroll27

    tinacarroll27 Senior Member

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    Mine is mostly upper, so I can't hold arms up and my back is very weak. but the weakest of all seems to be around the waist. My legs are ok but I find it difficult to stand for very long because of the weakness in my trunk.
     
    jpcv, MeSci and Jenny TipsforME like this.
  13. Old Bones

    Old Bones Senior Member

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    CANADA
    @Valentijn I'm the same. My upper arms and shoulders are particularly bad. I still haven't recovered from a few range-of-motion movements done at a rheumatologist appointment two months ago. Similarly, it took five months to perceive any improvement after using my arms more than usual -- an effort healthy people wouldn't even notice. Afterwards, my upper arms ached with fatigue, particularly when using them lying down (eg. when positioning an ear bud in order to listen to recorded books in bed). Almost three years later, my arms still haven't recovered entirely. What is it about this position that makes using my arms so difficult?

    Here's a link to an interesting research article:

    Mitochondrial Myopathy in Follow-up of a Patient With Chronic Fatigue Syndrome
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4748504/

    It includes several references to proximal muscles, including this:

    "Symptoms may show wide variability, from relatively nonspecific exercise intolerance or painful muscle cramps caused by exercise to muscle weakness in a predominantly proximal distribution."
     
    Valentijn, Diwi9, jpcv and 1 other person like this.
  14. Mij

    Mij Senior Member

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    @Jenny TipsforME I saw an M.E specialist many years ago to get my diagnosis and he asked me if I muscle weakness or muscle fatigue. I wasn't sure so he did a few tests and determined I didn't have weakness and that it was muscle fatigue. Fast forward 26 years later I'm still not sure whether I have weakness at this point.

    I'm not in the same shape and have less muscle mass than when I was 29 so lifting things feel heavier of course, but I still don't feel I have weakness.
     
    Jenny TipsforME likes this.
  15. Jenny TipsforME

    Jenny TipsforME Senior Member

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    The poll is surprisingly mixed so far.

    @Old Bones yes you've hit on the type of thing Dr Google is informing me about.
     
  16. Jenny TipsforME

    Jenny TipsforME Senior Member

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    I think these can feel pretty similar but be quite different medically. I get both on and off.
     
  17. marjojo

    marjojo

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    London
    Definitely lower arms and legs. Difficulty holding things, drop food between fridge and micro wave... Fatigue increases in course of day - by late afternoon (lying on bed) legs feel as if they were fusing feet up to knee. Mermaid syndrome?
     
    Jenny TipsforME likes this.
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My autonomic specialist explained to me that this was not muscle weakness but that both climbing stairs and lifting anything up triggered an autonomic response that was the cause of the problem with those movements.
     
  19. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    Uk
    I have muscle fatigue all the time and joint pain mainly in hips and knees depending upon activity.

    The muscle weakness is mostly upper body for lifting and carrying. I've put upper limbs for my response and ignored the all over option since that's fatigue rather than weakness? I hope that's right?

    I struggle to hold the weight of my arms above my head (e.g painting a ceiling is definitely out, but so is holding things steady for anything longer than a minute. Holding my iPhone to my ear is also challenging so I tend to prop my elbow when at home. Walking while holding the phone is pretty difficult so I adopt a weird alternating from arm to arm thing and hope I can fake listening to the conversation in between changeovers. I guess it's shoulders and biceps that are the biggest one for me.

    Drying my hair is not a problem since there's not much of it left.
     
    Jenny TipsforME likes this.
  20. jpcv

    jpcv Senior Member

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    SE coast, Brazil
    probably yes, because it depends on the the type of muscular fiber( cell) you are born with.
     
    Jenny TipsforME likes this.

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