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To exercise or not to exercise in chronic fatigue syndrome?

Discussion in 'Lifestyle Management' started by Min, Aug 21, 2009.

  1. Min

    Min Senior Member

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    http://www.mja.com.au/public/issues/181_10_151104/letters_151104-6.html


    In a letter to the Medical Journal of Australia, Garry C Scroop (visiting Associate Professor in Exercise Physiology, Department of Thoracic Medicine) and Richard B Burnet (Endocrinologist) of Royal Adelaide Hospital, state that patients with CFS are not deconditioned and that

    "Neither their muscle strength nor their exercise capacity is different from that of other sedentary members of the community (> 70%)."

    They state;

    "We remain unaware of any incontrovertible evidence that the various exercise training programs suggested in previous articles improve either the physiological or clinical status of people with CFS."
  2. Jody

    Jody Senior Member

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    Hi Min,

    Welcome to the forums. :)

    Brain is slow tonight.

    I read the article, and I can't figure out what they are saying ...:confused:

    Can you spell it out for me?
  3. Cort

    Cort Phoenix Rising Founder

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    Interesting. So lack of exercise is obviously not what causes ME/CFS. They say that ME/CFS in patients were not worse than sedentary people but sedentary people aren't in very good shape either. I think if you should engage in as much 'exercise' or activity as you can without flaring. Lack of activity has consequences for bone mass, cardiovascular health, weight gain etc. I think if you can do it then do it - for general health purposes :)
  4. kolowesi

    kolowesi Senior Member

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    exercise and PEM

    I've been sick since 1998, and I always exercised before that.

    Several docs told me that I would never get well if I didn't exercise (as well as family and friends), so I kept trying.

    Eventually, I developed heart symptoms. My stress test at that time, 2003, was normal for a person my age. I believe this means I was not deconditioned.

    After a few more attempts to exercise, and more serious relapses, I was diagnosed with a heart arrhythmia that happens when I get my heart rate up, such as walking down the street.

    This arrhythmia is correlated statistically with viral infection of the heart. At this time, I had active CMV by three different tests (all research, not available clinically). My doctor advised that I wait to do aerobic exercise until my viral infections got better.

    This year, I found out I have likely had Lyme Bb since 1998. One of the recommendations is non-aerobic exercise.

    I am in my 5th week of physical therapy. I wear a finger pulse-monitor to make sure my heart rate returns to it's normal rate (in the 60's) between sets of very mild non-aerobic exercise.

    At first, I had what I thought might be PEM, including feverishness. I missed a few appointments (I'm going twice a week to give myself time to recover) because of starting a cyst-busting antibiotic at too high a dose.

    Anyway, I wonder if this will type of exercise is all right. Always before, I would get into the aeorbic range, even when lifting weights. The trainers told me not to, but I wanted to get it over with.

    I have read that Ken Wilber is able to do non-aerobic and not set off PEM. Anyone else try this?

    BTW, there are lots of studies showing that exercise is harmful for some of us. Yet many medical professionals still label us as lazy, having a mal-adaptive response to stress, deconditioned, malingering, etc.

    I will not be bitter. I will not be bitter.

    Kelly
  5. Michelle

    Michelle Decennial ME/CFS patient

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    The best discussion of this that I've ever seen is this one by Staci Stevens et al. at a conference in Canada last year. It's a 30-minute video using Quicktime and I cannot recommend it enough.

    She talks about how she trains we ME/CFS patients to use our anaerobic energy system, and by doing so, increase our ability to utilize our aerobic energy system. It involves using a heart rate monitor to keep your heart rate within your anaerobic threshold (to find yours, you will need to get an exercise physiologist to do a blood draw, but according to Dr. Bateman [note: PDF] most ME/CFS patients are between 90-110 beats per minute). Actually that post by Dr. Bateman at the IACFSME site is another excellent answer to the question of exercise. And she has the same position that Staci Stevens has.
  6. Victoria

    Victoria Senior Member

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    "Exercise" or should we say "movement"

    I wish I could remember where I read some in depth stuff on CFS & Exercise.

    From my point of view (FM & severe disc disease & back surgery in 2008), may I suggest we all stop thinking about "exercise" in the usual way.

    I believe we should all refrain from using the word "exercise" as we traditionally think of the meaning of the word - ie formal, repetitive movements.

    Forget the word aerobic exercise (for the time being). You can always increase your aerobic fitness (& heart health) when you've improved your symptoms.

    From my experience, when in pain or extremely fatigued, the idea of exercise brings tears to my eyes. Every time I do something repetitive, I exacerbate my pain & chronic inflammation.

    I am best on Saturday morning when I do gentle, fairly regular "movement". I get up later, take my time, have breakfast, move back & forth between the kitchen, bathroom & bedroom tidying up, slow cleaning, careful bending, stretching to put things away or clean the bath (which I can't always do every weekend - it hurts to bend over). I walk out the door to put some rubbish out, have a soak in a hot bath. Walk slowly to the bus stop at the end of my street - about a couple of hundred metres. Catch the bus to the bottom of the main road (so I'm sitting for about 10 minutes). Walk slowly along another road to the Fresh Food Market (about 6 minutes). Stop at various stalls to shop & chat. Walk slowly back to the bus stop, wheeling my shopping trolley, I can't carry heavy bags at all............and so on. I don't hurry. If I see the bus coming I don't run - I calmly wait for the next one, if I miss it.

    Slow down, pace yourself.

    At work, I try not to sit down more than about 30 minutes - I have an ergonomic chair (with arm rests). I rest my elbows on the armrest as I finish each sentence on my computer. I have the computer section of my work desk slightly lower than my chair, so I don't have to try to hold my hands & wrists higher. As I am typing this post, my left elbow is actually sitting on my chair arm rest most of the time.

    What I am trying to say is that I'm best when I MOVE, slowly perhaps, gently - certainly. Walking home from work when my pain & fatigue is at it's worst, I try to "glide" home on a cloud. Sometimes my shoulder pain is excruciating when I swing my arms as I walk. I put my left arm into the opening of my zip up windbreaker jacket (like a sling) when my left shoulder is really is bad.

    I try to mentally make my limbs weightless. I pretend I am like jelly. It's sort of a mental exercise (in walking meditation - of which I have several books on the subject).

    I did this last night when I left work late. I had been typing for about 1 1/2 hours past my normal finish time. My neck, shoulders & upper back were screaming out in pain. Within about 5 minutes of starting my walk home, I started to "float" & when I got home, the worst of the pain had gone.

    Might take a bit of practice for these mental exercises, but I can assure you that they do work. Eventually there will come a day when this floating sensation will kick in automatically (without conscious thought) & you can walk further & one day, hopefully, you can get back to serious "exercise".

    For those who aren't bedridden (but not able to get out much), try doing as much "movement" as you can - in slow motion. Forget repetitive exercise if you're in pain.

    But do not sit still. When in pain, if you sit still, you will be more aware of the pain & your muscles will tense. When you move, your brain is sending messages to your limbs (perhaps subconsciously), but your thought pattern is divided - some of it is thinking about movement & some is thinking about pain. You're dividing your thoughts in 2 distinct directions. Your brain can't spend as much energy on processing the pain, it has to channel some of it's function in elsewhere.

    After my ankle surgery in 1998, I had a wonderful physiotherapist who taught me to do small muscle clenching exercises. Some of them were so minute, that you couldn't see them. One was: I had to put my hands on my knees (sitting down of course) to detect the faint movement as I clenched certain muscles in my knees. My knee has become so weak from not using it properly to try & evade the ankle pain. (Apprently, this knee weakness is quite common after ankle injuries). The muscles on either side of your knee cap weaken from lack of use & the knee cap keeps
    "falling off" & slipping to the side. After about 4 days, I felt much stronger muscle tone & could stand for longer. I was truly amazed as my legs got stronger & my ankle healed. I will never forget the magic of this & how I progressed.

    And for those of you who are bedridden & your wrists/arms/legs weak, try working your way through your body - gently clenching different muscles. Clench gently & relax, starting with about 5 repetitions for each part that you can manage.

    Don't know whether I'm explaining this very well.

    And when walking, just try moving as though you're a willow in a gentle breeze. When you're feeling stronger, try a slow gentle walk, 5,10, 15minutes & so on. Try walking to the end of your street (assuming you live in a suburban area) 3 times a day. Don't go for a long walk. By the time you've walked a distance & suddenly realise that you're exhausted, you haven't got the energy to walk back home again. (I know this one from experience).

    I have the perfect walk to work (15 minutes). This walk is absolutely perfect for me. I get plenty of fresh air & start to breath better in 15 minutes.

    Don't try to use weights, a gym or formal repetitive exercises until you have regained a certain level of muscle tone. Try Tai Chi or gentle joga perhaps.

    Just don't try to "exercise" too hard.

    As they say to the elderly "move it or lose it".

    (this can be applied to the brain as well - "use it or lose it". If your brain fog or brain activity is irregular, try some simple puzzles or crosswords to stimulate unused areas of your brain & try some simple meditation techniques to quieten down your brain).

    Will post my personal technique of quietening down my brain & blood pressure when I work out how to word it. It's easier to give instructions face to face than try to put it in words on the internet.

    Victoria :)
  7. kolowesi

    kolowesi Senior Member

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    Michelle and Victoria

    Thanks very much for the information. I will listen to that video, it sounds exactly what I need. The article was great!

    Victoria, I have a bad shoulder from a fall. Typing does aggravate it. I will remember the jelly idea. It's amazing you have such mind-body control. Cool!

    Kelly
  8. Victoria

    Victoria Senior Member

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    Kelly,

    Not just the "jelly" idea. Try mentally "melting".

    Close your eyes & imagine the top of your head melting (like chocolate) into your neck. Then imagine your shoulders melting into your chest & so on. (gently drop your shoulders as you imagine this melting. Gently drop your wrists & hands & so on).

    It took me about 3 months to get the hang of deep relaxation through a 5 minute breathing exercise to lower my blood pressure.

    Don't expect to be able to do it overnight. The harder you concentrate the less likely you will succeed. Sounds a bit weird to say this. But if you concentrate too hard, you tense.

    And I broke my left shoulder in a fall about 6 years ago - the bone break healed very quickly, but it took a good 6-8 weeks for the torn muscles to heal.

    Every cold morning (or when I swing my arms walking) my left shoulder is very painful. (it's not so bad in the summer).

    Keep practising at home, eyes closed in a quiet room (to start). Eventually, you should be able to do it where ever you are (without having to close your eyes). And I notice at work now, I do it automatically (when my tendon/muscle pain is bad).

    It doesn't work for me always. And it seems to work for head, neck, shoulder, arm, wrist pain (ie upper body) better than lower body.

    (I think you need to sit down as opposed to standing).

    Good Luck
    Victoria
  9. kolowesi

    kolowesi Senior Member

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    melting the pain away

    It just seems so amazing, but I believe you! I knew someone who could make his skin get hot (and there's that spontaneous human combustion show on the discovery channel).

    I can hear that voice in my mind saying "you can't do that." But I don't believe it.

    Thanks so much for the help.

    Kelly
  10. Victoria

    Victoria Senior Member

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    Kelly,

    Tell that little voice in your head to go away.

    I've always believed in the power of the mind. But when my pain gets to the "excruciating" level, it's really difficult to attempt any degree of mind control.

    But when you eventually succeed for the first time, you will be more optimistic about the possibilities.

    I have read many books on Buddhism (specifically Tibetan) & have a couple of interesting DVD'S. Am particularly interested in Tibetan Medicine (I have a basic certificate in western Herbal medicine) & the more I read, the more fascinating the "power of mind" gets. Wish I was able to travel overseas again & get some first hand experience of these "mind" practices used by monks.

    Victoria
  11. Cort

    Cort Phoenix Rising Founder

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    so much interesting stuff here; I want to put in a little plug for the Anat Baniel method. I'm using it with my things up shoulder (from the computer); its based on the Feldenkrais method - small movements designed to kind of reteach your brain how to move your body; fascinating stuff that really seems to work.

    I tried stretching for years - sometimes it worked but other times it made things worse - like it was hard on my joints; this is very different.

    Thanks Michele for those two links to the exercise video and the PDF. Popped them on the website immediately :)
  12. kolowesi

    kolowesi Senior Member

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    cort, victoria different ways to exercise

    Cort, I hurt myself doing chair yoga! And a few years earlier, doing yoga with a DVD. Both times, the damage lasted for many months. Now I wonder if the Lyme bacteria was/is in my connective tissue.

    Now when I lift the teensy little weights, I try to move very slowly with a breath for each rep. I may have hyperventilated a couple of times, :), but I'm going slower and moving less jerkily than I used to when I was in such a hurry to get it over with.

    It requires changing my whole attitude. I'm a little surprised.

    Victoria, you have been through so much. It is awesome that you have developed your mind power to help with the physical disability. I think that is what I want to learn, to add in awareness where there used to be mindless expenditure of energy.

    Pain is supposed to be a good teacher, I wonder if this is one way it happens? Arrgh. Part of me objects. But this is what we have to deal with, and you have let it lead you on. Thanks for sharing, and maybe the Buddhists will come to visit you someday:D

    Kelly

    PS Cort, that movement training sounds really good. Have you put info on the website? I will look. My favorite part of PT is the "wiggleboard." If it didn't cost $479 I would buy one for home. It has helped my balance already.
  13. Jody

    Jody Senior Member

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    Ooh, I LIKE that. Yes, I think they should. :)
  14. Michelle

    Michelle Decennial ME/CFS patient

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    You're most welcome, Cort.

    I love both of those because they explain why we can't exercise. How exercise is not going to cure you if you have ME/CFS. But it does explain how you can measure (fairly) emperically when you're overdoing it. While I find the heart rate monitor annoying as hell because it's like being attached to someone who is constantly nagging me, it is probably the most helpful "treatment" for ME/CFS out there. As both Stevens and Bateman explain, you have to learn to rest, pure and simple. You have to be disciplined and "move" and later "exercise" in tiny spurts. Which is a hard habit to break for me because I've been pushing through the exhaustion for 20-some years. But until I stop, I will continue to get worse, as will anyone else out there who too is pushing through the fatigue. Or riding the rollercoaster as Staci Stevens puts it.
  15. Cort

    Cort Phoenix Rising Founder

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    Haven't put Anat Baniel on the website but I will when I get that section of the website done. It's very interesting - small, subtle often small movements that really changes how your body feels. It's not about changing your muscles per se - it about changing how your brain interacts with your body; kind of retraining the brain so that it interacts more efficiently and naturallywith your body. An interesting idea for me since I had the idea for a long time that I over exert myself that most of my actions; that is I'm using too many muscles to accomplish the smallest things.

    I'm just getting into it - will report more later. :)
  16. Cynthia

    Cynthia Guest

    Hi Kelly,
    I was like you, I used to excerise on a reg. basis. But not now,,just walking my dogs isn't really counted as real excerise. My dr. just suggested it, in any way that I can, because he knows that I am having problems with my legs and back. I'm still active to a point, just can't seem to do anything to get that heart rate up, and that's what is important. I am considering to try some things from a chair..I know it's possible to get the heart rate up while just using the arms. I'll have to start slow at first, then work up if I don't have a bad flare. Man, that's just how it works..you try to do, and doing just makes problems..at times. Oh well, I guess I'll just keep trying. BTW, I also have the heart problem you speak of, I've had two heart ablations. I have to do things when my heart says so, and my legs. :)
  17. jackie

    jackie Senior Member

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    Thanks! SUCH good information!

    Hi Victoria, you've explained your versions of "movement" (we won't call it "excercise"!) so well...I'm going to print this page out and try some of your
    techniques!

    I've gotten kind of spooked about moving very much (I have OA, tachycardia and take Atenolol to slow my heart rate as my Dr. feels that the Enterovirus'
    are "drawn" to a racing heart).

    And yet I'm starved for some physical activity! I live on a steep hill 2 blocks above the ocean cliffs that look out to the Sea and Catalina Island (26 miles away, of course!)

    For many years before my illness I walked every day along the top of the cliffs for about two miles. That was the only excercise I did, but now I can't make it down my hill and certainly not back up again!

    I have a deck that runs the length of our house on the ocean side - about 50 ft. long - and I spend a lot of time resting out there (both day AND at night, under the stars).

    I just zone out looking at the ocean, listening to the waves crash and the seals barking - sometimes the foghorns!

    My husband jokes that he's going to build a big sand-box on the deck, filled with beach sand so I can sit with my bare feet in it again!

    By the way, with your interest/expertise in Tibetan Buddism, you've probably listened to Pema Chodron's cd's. I love how the Tonglen meditation system is called "simple and elegant! what an appropriate description!

    I have a few of the cd's that I especially enjoy..."Good Medicine - how to turn Pain into Compassion with Tonglen Meditation" is my favorite! Another is "When things fall apart". I like listening to the cd's as her voice is so calming, so very down to Earth...but with a terrific sense of humour!

    I recently read that she's been diagnosed with ME/CFS ( I think that I also read she's somewhat in seclusion at her Monastery in Nova Scotia)

    Must go rest, so thanks again for the good info... Jackie
  18. Dreambirdie

    Dreambirdie work in progress

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    The exercise that has worked best for me consistently throughout my 32 year CFS is yoga. I started doing it long before I got sick, so I was already used to it, and
    even though I can't at this point do the more vigorous Ashtanga workouts I enjoy so much :( I've found that I can create daily routines based on how much energy I
    have at the moment.

    There are days when I feel so grouchy from not getting enough sleep, that I resist doing my yoga routine at all. But it never fails that once I just stop complaining
    to myself about it and start in to a few minutes (even just 5 or 10), I almost always feel better. I think it is the BREATHING that is so helpful, especially in the
    Vinyasa flow yoga. It feels so good to move from one posture to the next with the in-breath and the out-breath. The rhythm of it has such a positive impact on my
    brain, as well as my body.

    One of the hardest pieces of internal programming that I've had to overcome in regard to exercise is that I don't have to do it all at once in a set workout. I can do
    10 minutes of yoga three times in day. I can ride my bike for five minutes in one direction and then walk it home. I can walk on the beach a few minutes and then
    stop, sit, and walk some more... BEFORE I am too exhausted. What a novel idea :rolleyes: and why didn't I think of it earlier?
  19. Kati

    Kati Patient in training

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    Exercise and ME

    In her recent presentation, Nancy Klimas talked about the importance of exercise in order to decrease the risk of deconditioning- I understand also that one has to be careful to avoid further crashing, so she suggests 5 minutes of exercise, and 5 minutes of rest-

    I consider myself very deconditioned, but I am able- sometimes- to walk 2 blocks. But then I go to bed for a few hours.

    What would be your definition of exercise, how do you start slow, and what exercises do you do- and by resting, would she mean lying down-

    (sorry, for some reason my keyboard doesn`t type question marks!!!!)


    :eek:
  20. Tony

    Tony Still working on it all..

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    It's not an easy one to answer Kati, but a good question. It's one many of us grapple with; an ongoing battle and learning curve.

    I think the best way to look at exercise for us is really as 'activity'. If having a shower wreaks havoc for 2 days then you need an alternative, like a shower chair or bath.
    Payback is the marker I use. If I don't feel worse the next few days after doing something, then that amount of activity is, for me, OK. For me, a 15 minute walk plus daily activities like showering, cooking, reading etc is about it.

    Start low and go slow is the best. If that 2 block walk is putting you in bed then its probably too much. Try 100 metres and only increase if you can do it every day, without payback.
    This site http://www.cfidsselfhelp.org/ has a lot of useful tips.

    Good luck with it all...:)

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