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Nancy Klimas video on a safe exercise program, how to do this when severe?

Discussion in 'General Treatment' started by anniekim, Jul 23, 2011.

  1. anniekim

    anniekim Senior Member

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    On the cfsknowledgecenter website there has just been a video put up by Nancy Klimas on the importance of implementing a safe exercise program for people with M.E. She, as I am sure many people know, advocates doing exercise within your aerobic limit. One can establish this best by doing a VOX test, although I think one can also use a heart rate monitor to get a rough guess at what's one limit is.

    What concerns me is that on the video Klimas says that if we don't exercise, we will get worse. I can see the advice on doing brief exercise episodes within one's limits when moderately affected is incredibly helpful advice. However, I don't know how one with severe M.E incorporates her advice. Firstly, if you are bedridden, or spending a lot of time flat on the sofa and bed, I don't see how you could possibly manage doing a vox test. Secondly, if your limit is literally one leg raise, how on earth do you establish a program? I find it a bit worrying that she says you will get worse if you don't exercise, when you are too ill even to manage basic stretches etc..

    Any thoughts much appreciated.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    While I agree with Dr. Klimas, from my own experience, I also see the dilemma. However I know that there are exercise programs designed for the bedbound that could be modified to suit your situation. I know there is a yoga program for this. Wish I had a link, but I don't.

    Maybe someone else can supply a link. I have also been, at time, bedbound, but when I was able to be up a bit, cobbled together an exercise program and really found it did help--not only to keep muscles from atrophying but to help OI and my state in general. I am now able to go to a pilates class (one using machines which make it less aerobic) and it really does help.

    I wish you the best with this.

    Sushi
  3. sleepy237

    sleepy237 Senior Member

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  4. anniekim

    anniekim Senior Member

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    Sushi and sleepy, thanks for your replies. I did three gentle leg raises a few hours ago and then three more twenty minutes ago. The latter has triggered a symptom flare (nerve pain and weakness down left arm, increased head pain), so seems three is my limit. The threshold is so low, but I can manage a few steps to the bathroom, sofa. I know some can't even manage that
  5. ixchelkali

    ixchelkali Senior Member

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    I think you just start from where you are. If doing 3 leg raises causes a symptom flare, then 3 is too much. Maybe instead of leg raises, you start with moving your feet in circles, once a day for a week. If you get no symptom flare, progress to twice a day for a week. If you get a flare, back off and continue at the lower level for a couple more weeks. If no flare, then continue with twice a day for a couple weeks, then try 3 times a day. The point is that when you have severe ME/CFS, you have to start with very, very small amounts of movement and increase it at incredibly slow increments.

    Another thing you can try is isometric exercise. Without moving, tense the muscles in one arm for 5 or 10 seconds, then release. Then do the other arm. Do this with all the muscle groups you can. If you tire, stop, rest, and start again later.

    I find that every time I have a bad flare, I have to start all over again at zero and work my way up. Sometimes all I could do at first was finger exercises. You have to have the patience of a saint and the speed of a snail. If you get a flare, rest for a couple of days or more and go back to the previous level for a couple of weeks before you try to progress again.

    It may seem that doing one arm raise twice a day couldn't possibly help, but it can. You will progress, you just have a different time frame from other people. More like a glacier.

    Somehow, this reminds me of an old Meg Christian song, "The Rock Will Wear Away."
  6. Tulip

    Tulip Guest

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    I don't agree with her that if you don't do anything you get worse, in my experience the human body is very smart and it lets you know when you should and shouldn't be doing something. I have had periods of being bedridden for months and didn't do a single thing, I trusted my body and after 3 months in bed I gradually was able to get up and about and then gradually over 12 months start doing things outside including taking the dog for a walk (this was years ago, not now).

    For some people though there is no "safe" limit. Some people must do nothing or risk sudden death.

    I think some doctors have forgotten just how smart the human body is....
  7. taniaaust1

    taniaaust1 Senior Member

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    some with severe ME, their exercise may just be squeezing their toes once or twice and opening and clenching a hand. (thou some cant even do that).

    POTS can worsen with long term bed rest and bedridden people who do nothing are have a high risk of things like getting blood clots in legs.
  8. svetoslav80

    svetoslav80 Senior Member

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    Here are my 5 cents. Just stretching won't do much for your illness. If you wan't to exercise for healing purposes you must try to do aerobic exercise, maybe starting with 2, 5 or 10 minutes. And for those who are capable - even more - say 20-30 minutes a day, as long as you don't get PEM after it, you know your condition better than anybody else; I think this is possible even if you're in bed, as long as you're able to move some of your limbs. Now for those who don't know, the purpose of aerobic exercise is not to make muscles, but to increase your heart rate for a while, which is supposed to have some healing effect over your body - you know, improved blood circulation, deeper breathing - more oxygen, and if you are capable to do it long enough, your brain will reward you by secreting endorphines (be careful, this is a narcotic), and you may experience the "runners high" while in your bed. So let's begin. For those of us who are capable, stay out of the bed and do crouches. If you're sicker, just stand up of the bed, then sit down, stand up, sit down, and so on. Or something more complicated -while lying, get up of the bed (lift your body), then stand up (with your feet, out of the bed), then sit down and lay down again. And repeat. That should increase your heart rate quick. Actually you'll enter into "aerobic mode" quicklier than a healthy person, because your heart will get tired quicklier and will start beating faster. If you really can't stand up, maybe it's not a good idea to exercise, but you can always try crunches, lifting the legs, or both combined, and see how you tolerate it. Remember that the purpose is to increase your heart rate, and not to make muscles, so maybe quicker, even chaotic movements without too much strength involved, and without striving to make the exercise "the right way" (so you don't overdo it). After repeating many times, at some point (for someone after 2 minutes, for others after 30), your breathing will become difficult, and your heart will beat very fast. Now many people would recommend to have a heartrate measurement device , and calculate what should be your heart rate through a formula, but that's not needed at all. The golden rule here is this: try to say a sentence, if you're capable to do it without problem, then increase exercise speed a little. If you have difficulty talking, then you've reached the desired heart rate, just keep it the same. For healthier people minimal time for aerobic exercise is 30 minutes, I guess for sick people it's something like 5-10 minutes, so stop after the time ends.
  9. lansbergen

    lansbergen Senior Member

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    Exercise to heal ME is an illusion.

    A body that tries to fight an infection will not benefit from excercise. It has too many things to do already. It will not get better from an excersise burden on top of that.
  10. Wonko

    Wonko Senior Member

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    Congratulations on perfecting a method of dispatching pesky severe ME cases that uses no gas, explosives or bullets. In these times of economic hardship every little saving counts.

    Exercise is not (IMO) a good idea for people with severe ME in the same way as sprinting is not a good idea for people with broken legs. It's that simple.
  11. Esther12

    Esther12 Senior Member

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    Exercise does lots of good things for our bodies and minds.

    Generally, a diagnosis of CFS/ME means that people respond poorly to the exercises they've been trying to do - if you're able to exercise okay, you're unlikely to be classed as suffering from CFS/ME!. I think it's quite likely that certain exercises will still be useful and rehabilitative for many people with CFS/ME... but it's darn hard to find the right ones, and the right level. I've recently started using pilates to improve my core muscle strength, and it's yet to lead to any real improvements, but hasn't made things worse.

    Someone I know has recently been diagnosed with a condition which means that the exercises they were previously told to do for CFS were actively damaging, but they now have some new ones which should be helpful. Trying to rehabilitate a condition when you don't know what causes it can easily go wrong. It's likely that different people with CFS/ME are likely to respond differently to different activities.

    My endless repetition of 'different' requires this link:
  12. Wonko

    Wonko Senior Member

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    I have a completely different viewpoint about moderate or mild ME and exercise but the question was specificaly about severe ME and exercise.
  13. Valentijn

    Valentijn Activity Level: 3

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    You have an atypical case Svetoslav, which doesn't involve PEM (or PENE now), but I think you really need to understand that PEM/PENE is central for most of us. Some of the real ME/CFS doctors think PEM/PENE occurs as a result of passing the aerobic threshold, because our energy source for aerobic exercise is faulty. This makes a lot of sense if you have read the mitochondrial theories, and reflects the experiences of many of us.

    I doubt that exercise will ever directly improve any case of ME/CFS, but doing what we can safely (keeping the heart rate under 60%, etc) is useful to prevent muscle wasting and possibly to improve or maintain blood volume. But the restrictions created by ME/CFS are really the bottom line, as there's no point in keeping muscles from weakening if we're constantly making ourselves very sick in the process.
  14. svetoslav80

    svetoslav80 Senior Member

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    OK I got it. I'm not right. So those with SEVERE CFS should not exercise. But I can't agree with lansbergen on multiple points:
    First is that you're not even sure if the reason for your condition is infection or not. Second if it's infection (some other illness, not CFS), it's completely untrue that you shouldn't do exercise. For example I have chronic infectious prostatitis and I'm prefectly safe to do exercise. And I do it. In fact I have done exercise even in the acute phase of a cold disease and I think it heals me faster. But again you're right my condition is not CFS and I agree with you about CFS that you shouldn't do it if it's severe case. I don't know if I should delete my post now.
  15. lansbergen

    lansbergen Senior Member

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    Disagree as much as you like.

    When you get birdflu (the dangerous one) exersice it away then.

    You do not know me and even if you knew me you would not know what I know and don't know.

    It is clear to me that you do not know what severe ME is.
  16. svetoslav80

    svetoslav80 Senior Member

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    You're not talking specifically for ME/CFS here, or for Bird Flu, but for any kind of infection. I'm just telling that there are certain infectious diseases with which you're safe to exercise.
  17. Wonko

    Wonko Senior Member

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    Sorry but is that relevant? You've advocated exercise of a particularly damaging type for severe ME, the fact that it might be safe exercises for other, presumably non chronic and resolvable, infectious deseases surely isnt relevant in that context?

    TBH I dont know ME is infectious, I dont actually care as it's not at all relevant to this. What is relevant (and I suspect is the point lansbergen was making) is that severe pwME do not have the energy/resources/ability to heal themselves (of whatever is wrong with them) in the same way as people with the common cold and that asking their bodies to provide resources for exercise in this situation, and hence leaving their bodies with even less resources, is absurd to put it mildly.

    This isnt to say that non conventional "exercise" methods (such as massage to help the lymphatic system move toxins) arent helpful, if they can be afforded/tolerated, but the idea of exercise to build (impossible) or maintain (not necessary) muscle tissue just isnt workable in this situation.

    To put this in context, I have ME ranging through mild (occasionally), moderate (most of the time) to severe, when it's mild or even the mild side of moderate I exercise using free weights, whilst not strong I am stronger than the general population (ME permitting, my status makes a huge difference to both what I can lift and how long for).

    I couldnt do what you advocated without severe consequences, let alone someone who's basically bedbound.
  18. anniekim

    anniekim Senior Member

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    I am surprised that Klimas insists one has to do some exercise within ones limits if one doesn't one to make the illness worse. If the m.e is severe and Pem (or pene) comes on after literally sitting up in bed, it seems a tad depressing to say if you don't exercise, albeit briefly, you will get worse.

    In all of my years of me, at moderate and now severe, I've never been able to improve the condition through very careful exercise. Im surprised at klimas' stance. I heard her say in a video if you are bedridden you can still do gentle weight lifting in bed. There's no way I could do even two lifts without bringing on pene.
  19. Wonko

    Wonko Senior Member

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    Nothing wrong with exercise within your limits, provided you know what your limits are. However for severe pwME those limits are effectively nil, if not negative.

    Lifting any form of extermal weight in bed (no matter how light) is a really silly idea unless you like concusion and joint damage.

    People seem to think that muscle wastage is a serious problem in pwME, nothing I've read has suggested it's an issue, in fact the reverse seems to be the case, people are suprised at just how much muscle mass they retain (ie all of it) after months being bedbound, weak and uncoordinated yes but muscle wasting no. I've got a theory about this but it's just that, very little to back it up.

    Deconditioning is another matter, but once someone improves from severe it's a relatively simple matter to sort out deconditioning, peoples natural desire to take care of their own basic needs will sort out clinical deconditioning very rapidly given there's no loss of muscle mass.

    Pacing works, do a little less than you think you can (than experience teaches you you can) and no more. You wont lose muscle tissue, you wont become deconditioned, thats all a psychobabble myth. If you need to do more then either get help or adjust your expectations. There's no other way round it that I've found, as trying to do more than your capable of will pretty much always lead to you only being able to do less.

    edit - clarification, obviously if your lying on your back for several months you will become clinically deconditioned, my point is it's not the huge deal that everyone seems to make it out to be, it's easily fixable once you progress from severe to moderate, and that anything you try and do to fix it whilst in that condition is both liable to be ineffective and prolong the time you remain severe. Your bedbound for a reason, you need to recover.
  20. Tristen

    Tristen Senior Member

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    I haven't watched the video's yet and therefore can't make judgements, but would like to add that I vaguely remember Dr Myhill saying something about not exercising until a person is at that place of feeling normal (well), when doing nothing. They still had the PEM and activity intolerance, but doing nothing, they felt pretty good. In other words, a mild level of ME.

    http://drmyhill.co.uk/wiki/Exercise_-_the_right_sort#Exercise_must_be_the_right_sort_to_give_benefit

    I agree that our bodies are begging for complete rest when at mod-severe levels of ME, and that it's counterproductive to attempt even the mildest exercise before one feels really good at base line. And even then, aerobic exercise is out.

    Pacing is key, but is also a mute point with those bed bound severe folks. I know, I been there when rolling over caused PEM.

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