Muscle wasting/pain in legs anyone?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by tamsyn, Jul 10, 2013.

  1. tamsyn

    tamsyn Member

    I've had ME/CFS for about 14 years. If I really pace myself, I am relatively stable albeit limited in what I can do. But I try to get daily exercise walking my dog, shopping etc. If I push myself too hard, by being more physically active, I do not build bigger and stronger muscles. The reverse happens! Within a period of about 4 day or less, my calf muscles go from being firm and smooth to being visibly shrunken, and to feeling mushy and soft to the touch. I get excrutiating nerve pain in my feet and calves, and my legs go so weak I literally cannot go up stairs.

    Since I have some cardiac issues (likely also due to CFS) I assume that this muscle wasting is due to lower oxygen levels in my extremities, and poorer blood flow. But maybe its metabolic? I don't know. But I would be very interested to know if anyone else has this symptom, if their docs have suggested a reason for it, and how they deal with it. It's so frustrating! The only thing I am able to do is complete bed rest followed by a vry lowered activity level and it takes me ages to rebuild the muscle and my strength.
  2. Realette

    Realette Member

    There's been alot of stuff available to read for years on progressively weaker muscles. My belief is that they very slowly decline in function and eventually regress. More people use scooters. I have experienced fatigue/weakness, very mild to quite severe in 40 years. Huge reductions in using the muscles is key. Raising the legs is good, on phone or watching TV. Swimming is one of the best and worth the effort to arrange. Gentle Yoga, also good. Stretching exercises could be frequent, daily if possible. The CFS body is complex in the way it reacts to muscle use, but we aren't getting any younger, anyway.
  3. tamsyn

    tamsyn Member


    Sorry, I think you misread my post. The muscle wasting occurs when I INCREASE above my usual regular daily exercise which includes walking my dog twice daily, grocery shopping, gardening (I have 3 vegetable plots, 2 acres of grass to cut, and numerous perennial beds), housework, and looking after my horses and 15 acres of fields. If I add extra onto this, then over a period of about 4 days I experience rapid muscle wasting, severe nerve pain, and crashing fatigue BEFORE I end up in bed. This symptom is due to MORE exercise than normal -- it is not due to lying in bed. With due respect, to suggest that lifting weights is going to 'cure' this is just plain ridiculous. Giving advice like this to people with ME/CFS is not helpful -- doing more of what makes your illness flare is not helpful. I spent 10 years ill, running a business, raising a child alone, travelling for business, and running a large house. I know all about pushing myself, "getting up" as you call it -- it only ever made my illness worse. 'A type' people do not need to be told to "Get moving" -- they need to be told how to learn pacing. Please educate yourself about the very real physical symptoms of ME, including post exertional malaise and cardiac insufficiency, before you post advice to people about exercise.
  4. Realette

    Realette Member

    I totally agree with Tamsyn. It appears that Musclepain3 has a nursing background and has seen many people with varying conditions improve by "pushing to move". This is one of THE BIGGEST ISSUES and MISUNDERSTANDINGS re: CFS and some cases of FM. I also raised a child alone for 10 years and had incredible demands on my life for many years and now I regret how much I tried "to keep moving". Having said that, this illness often defies logic, how can we have so much fatigue and pain when we've already reduced our activities so much? Just having this Forum represents the new ways in which more people (and hopefully doctors) can start to learn about these complex conditions.
  5. IanH

    IanH Active Member

    The pain and fatigue in ME/CFS is not due to any form of muscle wasting. However over the years of the illness some muscle wasting will occur unless some forms of yoga or regular "light" exercise is engaged. Unlike the GET ideas in Britain and Denmark etc. it is not possible to cure ME/CFS with ever increasing exercise activity and as many people with ME/CFS will attest, doing too much will increase post exertional malaise and pain. Proper pacing is essential and it is worth reading the research and recommendations of Prof. Leonard Jason.

    The PEM is probably caused by an immune system reaction to the exercise. Theoretically this then causes the following:

    1. inability to replenish cellular energy stores because mitochondrial function is reduced when some immune cytokines are elevated. These are elevated all the time in ME/CFS, but when you overdo it they rise even more for many hours and sometimes days after the exercise. (see the work of Prof. Alan Light)

    2. Poor "circulation" in the arterioles and premature shunting of blood via arteriolar-venous shunts. These shunts take away blood from the periphery ie. skin and muscles and nerves. When starved of blood neuropathic pain increases in the nerves supplying these tissues.

    3. Accumulation of oxidative stress toxins which are not "neutralized" or carried away normally. Oxidative stress has unwanted effects on the mitochondria but also on the nerves so contributing to the fatigue and the pain. This is probably the main reason for many other symptoms, particularly those of the digestive tract where the digestive tract pores have been shown to be "leaky". This is probably why some people with ME/CFS also get more diarrhea after exercising too much. So much so that many people have thought they must have had food poisoning.

    4. There is an inadequate adrenal response in some people to exercise.

    5. Some people with ME/CFS have some thyroid dysfunction. Following excess activity there will be a "hypothyroidism" in turn affecting mitochondrial function and muscle energetics.

    Why the immune system "reacts" is still not known.
    tamsyn likes this.
  6. tamsyn

    tamsyn Member

    Thank you for taking the time to summarize this complex issue -- I really appreciate your expertise and clarity. Thanks!
  7. Soul*

    Soul* Active Member

    I don't know if I have the actual muscle waisting but I do have the pain in legs every now and then and it's the same pain as I remember from my childhood that was always done away with as being growing pains. Pacing is my best method to stay pain free as much as possible and having a strict diet helps me too. I don't use meat, eggs, dairy, sugar, coffee, yeast and some others. I used to be in pain 24/7 but with good pacing I am now able to limit the pain to a minimum. If I overdo it will be back and may take quite some time to settle again and hormonal changes will always make me more vulnerable for a while. I don't have a car but do ride a bicycle on days I feel well enough to go out. 1/3 of a mile once or twice a week is the maximum for me in good weeks.