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Muscle Weakness

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by Moxie, May 28, 2013.

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Do You Experience Significant Muscle Weakness?

  1. Yes, weakness is one of my top 3 complaints

    31 vote(s)
    66.0%
  2. I experience significant weakness, but in the scheme of things it's a minor complaint for me

    10 vote(s)
    21.3%
  3. I experience weakness only occasionally or very mildly

    6 vote(s)
    12.8%
  4. Weakness is not part of my clinical picture

    0 vote(s)
    0.0%
  1. Moxie

    Moxie

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    I see muscle weakness mentioned here and there, but almost as an aside. I'm wondering how much it plays a role in ME/CFS. For me, it's one of my biggest complaints and the most limiting when it comes to enjoying day-to-day activities and life in general. I'm wondering if I'm alone in this?

    I start out okay, say, for the first few stairs on a flight of steps, then my legs just rapidly get weaker and weaker. Some days I can barely make it to the top of one flight, some days I can walk up and down several times before it hits. Same with my arms..I can put away a few dishes or start dinner with few concerns, then I have to be careful because I suddenly may not make it with a hot dish from the oven to the counter or be able to pour water from a tea kettle. It's a dramatic and sudden decrease in strength that persists. Also, when I over-do badly enough, my baseline gets worse and worse, as I'm experiencing the last few weeks.

    I might even go so far as to say this is my #1 symptom, in addition to extreme general exercise intolerance.

    For context, I completed a full century ride (100 miles on a bicycle) just 18 months ago, and this prolonged weakness and exercise intolerance began 9 months ago, so, like many of you, I can safely rule out de-conditioning. I had a previous episode of similar symptoms 4 months before the century, but recovered well enough to complete the ride despite gall bladder surgery thrown into the mix during that time also. Still just trying to figure this whole thing out and wanting to know if this fits the ME/CFS big picture.
    merylg, taniaaust1, Sherlock and 5 others like this.
  2. SickOfSickness

    SickOfSickness Senior Member

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    Thanks for this thread. I agree it is overlooked mostly. PEM is commonly used and griped about, and I think PEM would include weakness as a hallmark of PEM.
  3. Moxie

    Moxie

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    Thank you, that's very helpful. I have read so many describe their PEM as involving more flu-like symptoms, where for me, it seems to be more an exacerbation of weakness, pain, general fatigue, and GI symptoms. My lymph nodes stay swollen, and I always experience flushing and sweating episodes - that doesn't seem to worsen after exertion. I also become hypersomnolent (thank goodness - I far prefer that to insomnia!). I just wanted to confirm this still fits the picture correctly and that I'm not wasting time barking up the wrong diagnostic tree.

    Thanks again, and thanks to all the poll responders already!
    merylg likes this.
  4. Ruthie24

    Ruthie24 Senior Member

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    I've been complaining about weakness since I first got sick but because I still can do a manual muscle test ok, my neuro never really "believes" me, although he does note that I report "functional weakness" in his notes.

    I'm wondering if it's somehow related to mitochondrial dysfunction. When I did the Steven's 2 day test, I was told I had good O2 sats throughout but my muscles weren't taking up the O2. One theory as to why that happens is mitochondrial disease/dysfunction. Another is that we've lost the ability to uncouple the O2 from the hemoglobin for some reason. It would certainly explain weakness and fatiguability of the muscles it seems if they aren't utilizing O2 appropriately for whatever reason.
    SOC, merylg, Sherlock and 4 others like this.
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I don't usually notice muscle weakness. One reason may be that I am only a moderate case. Another reason may be that I have been ill for years and stay within my limitations most of the time.

    One time I was helping my father carry something. All of a sudden my arm muscles gave out and I had to put my end down. It was sudden and dramatic. I was able to pick my end back up in a few minutes and carry it the last few feet. I would not have been able to carry it much farther. I would have been able to carry it a MUCH greater distance without any problem before ME.
    merylg, Sherlock and Moxie like this.
  6. SickOfSickness

    SickOfSickness Senior Member

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    I am those things too, but my muscle weakness is a big problem. I have Fibro and OI so the weakness could be caused by one of those.

    I can't remember what it felt like before my weakness, CFS, and Fibro so I am an unusual example. I know I used to do physical activities and they became hard to do anymore.

    I have heard of some people with a muscle disorder being misdiagnosed with Fibro or CFS.
    merylg and Moxie like this.
  7. PennyIA

    PennyIA Senior Member

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    Iowa
    Have any of you experienced sudden onset, sudden relief - muscle 'failure'? I.e., I'll be walking along just fine, but then my left leg muscle goes weak first - then totally fails to support my weight. Since i'm walking, I'm usually stumbling, but my OTHER leg can catch me. But next step seems fine. I couldn't figure out why I kept having trouble walking for the longest time - until it happened in one of my arms once when I was trying to lift myself out of bed. Since the one arm failed and the other one was working fine, it was obvious that it was related to the muscles not being able to 'hold' a position. After that, when it happened while walking I was able to notice the weakness when it would come on and be able to stop - support myself through the other leg, and then resume walking when full-strength returned. Never lasts more than 30 seconds .... my doctor gave me the 'you are insane' look when I brought it up. But I KNOW what I feel happening and now that I can feel it oncoming, I've been able to test my theory - and I lose all strength in the affected limb when it occurs.
  8. SpecialK82

    SpecialK82 Senior Member

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    Muscle weakness is my number one complaint as well. I have PEM and all the other problems too. My muscle weakness used to be intermitent - like when I was really stressed at work (tensed up over a period of time). My muscles would get weaker and weaker and start to shake and fail me. The only thing I could do was to rest, which worked and set me back to baseline. However, over the years, the weakness came on more and more while I was doing much less. Now it is a constant. I am very weak to even sit or stand for a few minutes. It's difficult to lift a full water bottle sometimes if I am sitting down. My core muscles are shot. I've noticed if I need to open a slightly heavy door, that the movement pulls my whole body off balance because my arms are too weak to handle it alone.

    I love the poll, I have wondered the same question.
    merylg and Moxie like this.
  9. Moxie

    Moxie

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    PennyIA, my experience hasn't been quite so dramatic. At my worst, I do experience a very rapid decline in strength that causes me to have concern for my safety in some situations. Early on (before we both realized this was going to be something long-lasting and life-changing), my husband wanted to get me back on my bike even if just for a half mile or so. I was terrified that I'd lose strength suddenly and end up on the ground before I could unclip from my pedals. The difference for me is that strength doesn't return quickly like you describe.

    SpecialK82, yes! I do that with the doors, too. I sometimes have to turn my body to a heavy public door and push with both arms and body to get through once I've got it cracked open.

    It makes me wonder why no one's ever done a muscle biopsy. I mentioned it to my GP and she kind of shrugged and said she'd re-run my CPK, which has always been normal.
    merylg, Sherlock and SpecialK82 like this.
  10. Lou

    Lou Senior Member

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    Couldn't that be neurological? Perhaps methyl b12--methylfolate deficiency? Something you may wish to look into, check off the list.
  11. SickOfSickness

    SickOfSickness Senior Member

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    I'd like a biopsy too, but I know the doctors will roll their eyes. I have normal CPK and had a normal EMG. I think our problems are subclinical. That means tests will miss diagnosing us because we are below the clinical thresholds.


    How long does it take? I'll be weak for hours, sometimes days. Mostly dependent on how much I overdid things before (so I consider it part of PEM). But I also have briefer times of weakness where I can usually recover in minutes, but the weakness happens faster each time. Like I can do something for 90 seconds, rest 30 seconds, 70 seconds, rest 30, 50 seconds, etc.
    Moxie likes this.
  12. Valentijn

    Valentijn Activity Level: 3

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    After an airport death march, I had a major muscle in one leg stop working for about an hour. Couldn't lift that leg all. The other leg was still responsive though.
    Moxie likes this.
  13. PennyIA

    PennyIA Senior Member

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    The doctor said 'undiagnosed nuerologic condition' before I had figured out what was really going on and didn't quite believe me for the sudden onset symptoms. And it's not like I can command them to happen at will in front of him - sigh. Nuerologist suggeted I needed psychiatric treatment (so I never went back).

    BUT - I do have several methylation defects and am working on treating them right now. Almost all of my symptoms have been alleviated, but only time will tell if I suffer this sudden onset weakness again without the other symptoms. It would be lovely not to have to deal with it anymore.
  14. filfla4

    filfla4 Senior Member

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    I too get muscle weakness and have voted in your poll. But I also get what I can best describe as "ligament weakness" and I can distinguish between the two. Many moons ago I had dislocated my pelvis in childbirth (a fact which De Meirleir connects to my ME). When I am at a low point, like right now, my pelvic ligaments really ache. Does anyone else get this?
  15. ahimsa

    ahimsa Senior Member

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    Oregon, USA
    Regarding the poll, I'd say that I have huge problems with muscle stamina but I think that's different from muscle weakness. So I'm not sure how to respond to the poll.

    I can lift a bag of groceries (reasonably heavy) from the trunk and take it into the house, no problem. But if have to hold the phone receiver (reasonably light) to my ear for more than a minute or two then that is very hard for me. And if I hold it for 8-10 minutes then I will get a muscle ache (some time later, not immediately) in my deltoid on that arm. I use a telephone headset for that reason.

    Anything isometric -- trying to hold a muscle in one place for a long time -- is very hard for me. I sometimes wonder if this is one part of the cause of my problems with Orthostatic Intolerance (NMH diagnosis in my case).
    Something like this used to happen to me. I'd be walking along and suddenly my left leg would give out on me and I'd stumble. I never fell all the way down to the ground. I'd just trip and stumble a bit until I was able to catch myself. Strangely, it was always my left leg that would do this, never the right leg. I think it was a muscle problem, and not a problem with balance or uneven ground (it happened on very flat ground, paved ground, carpeting, etc.), but I don't know for sure.

    This used to happen to me when I was pushing myself too much. Since I've been on disability (not working), and more careful (most of the time!) not to push myself into a bad crash, this does not happen as much. I can't remember the last time it happened.

    Oh, and unlike you, PennyIA, I never felt it coming on. It always took me by surprise.

    I never mentioned this leg problem to any doctor. It was one of those "weird" symptoms that was just too hard to describe and too intermittent to figure out what was going on. And I had so many worse symptoms to discuss with doctors.
    Sherlock, Moxie, Valentijn and 2 others like this.
  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I think mine is more muscle stamina rather than muscle weakness, too. My muscles work pretty well until they don't.
    Moxie, Valentijn and Ruthie24 like this.
  17. Moxie

    Moxie

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    Yes, my EMG and NCV were both normal, too. It's so frustrating! The fallacies of medicine. It's sometimes at least as much art as science.

    What you describe is very similar to what I experience. It is variable, but does (usually) seem to be cumulative. The more I do, the longer I can usually expect it to take to recover and I do get progressively weaker and/or experience progressively less stamina.
  18. Moxie

    Moxie

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    I do experience this, too. Holding up my kindle to read for any length of time is difficult, even if it's resting on something. My wrist will get sore quickly and I have to keep adjusting my position to use different muscles or prop it on something where it's entirely supported. Yes, holding the phone, too. Definitely. This is on top of the weakness I experience for active muscle use, too. I have a very hard time walking up steps or hills because my legs don't have the oomph.

    I think working has a big impact on this for me. I only work 2 days a week, but the shifts are fairly long and involve variable amounts of activity. After a more active shift, I'm completely useless for at least that night, often for the next 2-3 days.
  19. Moxie

    Moxie

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    It's definitely both for me. My stamina is pitiful, but my baseline strength is terrible, too.


    On the one hand this is all somehow reassuring to read. On the other hand, it's pretty disheartening. I know many of you have been ill much longer than I have. I won't lie..I miss being able to use my body. I guess part of me was hoping this was something unrelated and treatable. I truly do appreciate all the input.
    merylg likes this.
  20. SickOfSickness

    SickOfSickness Senior Member

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    I have something like this too in the hip area. Mine may be related to tight, shortened ligaments.

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