Guidelines for exercising with ME/CFS or FM?

Discussion in 'Fibromyalgia Main Forum' started by ProHealth, May 3, 2010.

  1. ProHealth

    ProHealth Member

    by Karen Lee Richards
    April 29, 2010

    Q: I am really tired of having people tell me about how exercise is good, and no exercise is bad. I was a runner before ME/CFS & FM, but now trying to do what I love is a disaster. How can I rise from total potato status without a flare?

    A: Exercise is a touchy subject for ME/CFS and fibromyalgia patients. Since post-exertional malaise (extreme, prolonged exhaustion and a worsening of symptoms following physical exertion) is a key symptom of ME/CFS, most patients balk at the suggestion of exercise. And for FM patients, when it hurts to move, the idea of exercising seems unfathomable – yet multiple studies have shown that exercise is an important component of any FM treatment plan.

    Part of the problem is that most people think of exercise as jogging, aerobics and other strenuous activities.

    ME/CFS and FM specialist Dr. Charles Lapp suggests redefining “exercise” for these patients. Perhaps a better word would be “movement.” He says the main thing is to avoid strict bed rest, which causes deconditioning, which in turn makes symptoms worse.

    Important ME/CFS & FM “exercise” tips:

    • Move your body as much as you are able – even if it’s just walking to the kitchen for a glass of water.

    • Deep breathing exercises – learning to breathe from the lower part of the diaphragm – are essential. Shallow breathing increases neck and shoulder pain and can cause chest tightness, shortness of breath and spasms in the postural muscles. Deep breathing eases tension and improves the circulation of oxygen in your body. Dr. William Collinge offers an excellent explanation of how to use deep breathing to relax (scroll down to "Using the Breath").

    • Stretch your muscles periodically throughout the day. Begin slowly with seated stretches. After several weeks, if you are able, progress to standing stretches. [See the Arthritis foundation’s short videos demonstrating seven simple stretches.]

    • When you first begin any new type of exercise, think in terms of seconds, not minutes. Depending on the severity of your illness, start with as little as 30 seconds and build up very gradually (i.e., spend several weeks at each level).

    • Take frequent rest breaks. The CDC recommends that ME/CFS patients rest three minutes for each minute of exercise. Once you’ve moved into strength training or cardiovascular exercise, it’s a good idea to only exercise every other day, allowing yourself a day of rest between workouts.

    • Break up your exercise sessions. Five three-minute sessions are much better for ME/CFS patients than one fifteen-minute session.

    • For those who are able to tolerate a longer period of exertion, water exercise may be a good option. Water’s buoyancy decreases the effects of gravity, displacing 85 percent of your weight. As a result, it takes less effort to move because you don’t have to support your whole weight. Also, immersion in water promotes relaxation, reduces muscle fatigue and lessens pain perception.

    To read more about physical activity and stretching for fibromyalg patients, see “Planning Your Exercise Regimen,” by Claudia Craig Marek, Medical Assistant to FM specialist R. Paul St Amand, MD.
  2. hollie9

    hollie9 New Member

    I do strength training and have had good success. If my heart rate gets up, I stop and let it go down.

    I did yoga a few years ago with a personal instructor. At first I had relapses after every session (3 times a week) but after 6 months became so strong I no longer had relapses and became so strong my CFS greatly improved. My theory is that I was so strong it took less energy to do things.

    Then I had a lot of surgery and got deconditioned.

    Now I am building back up with Pilates and personal instructor (on the Pilates reformer machines). After just 10 sessions I now have 6 pack abs, lots more muscle but still relapse after every session to bedridden. I will keep at it and, like the yoga, I feel sure my relapses will eventually subside. As a bonus I've lost inches and am definitely more toned.

    I want to emphasize that at first I had to drag myself out of bed for the yoga and pilates. I don't think this would have worked if I had also done aerobic exercise with the strength training, aerobic exercise takes lots more out of me.

    Tried swimming at the gym but the effort of driving there, putting on swimsuit, taking off swimsuit after, etc. made it too hard for me. I strained my knee in a water walking class.

    Also I've done weight training with free weights at home (DVD) and that helped me a lot too.

  3. TigerLilea

    TigerLilea Active Member

    Hi Hollie - I often wonder if we were able to suck it up and just work through the Post Exertional Malaise (PEM), if down the road we could get past it somehow. On the days my PEM is really bad I just don't seem to be able to get myself motivated to do any form of exercise.

    Glad to hear that you are having success with exercise. You'll be my inspiration the next time I want to give up.

    Take care :)
  4. hollie9

    hollie9 New Member

    I do just suck it up and go through PEM, at first spending a full day and more bedridden. And I definitely have no desire to do anything during PEM and don't.

    When PEM burns off, I go for another session, like I'm going to do today...I don't feel as good as I should due to other things like not having a good night's sleep, but I think I can make it through the session. Tomorrow I won't be able to do much. But it's so much easier PEM with strength training rather than aerobics.

    If my prior experience holds true, in a month or so I should be much more able to do Pilates sessions without major relapse and in the long term, no relapse at all and better energy all round.

    I'll try to post my progress in a whenever the turn around happens.


    I find if I have a trainer waiting for me it forces me to do it. I put it off at home too often. Hopefully I will only need the trainer until I get built up more, then go without her.[This Message was Edited on 05/07/2010]
  5. Chelz

    Chelz New Member

    Exercise has been one of my biggest challenges to date with having FM/TMJ. I knew I needed to get moving more. My chiropractor had suggested using an upright or recumbent stationary bike because of my sensitive hip issues, back issues and knee problems. He even told me that brisk walking would probably flare me up. All I could think of is if "walking" would flare me up, then anything would.

    I rejected this advice and continued to sulk because I couldn't exercise. Eventually, I got up the nerve to purchase a Schwinn bike and decided to go VERY VERY SLOWLY at first.

    I also purchased a pair of bike riding shorts from a bike shop. These shorts are padded in the crotch and inner thigh area, they were expensive, but extremely worth it for my sensitive body parts, LOL. I believe these shorts also help balance my hips out as well.

    I started an exercise diary where I put the date down, how long I exercise and how many calories, according to the bike, I burn. I started with only 2 minutes a day and increased my time by 30 seconds everyday, that was last October.

    By December os 2009, I was up to 30 minutes everyday. Because of having FM or for others having CFS as well, we do have special issues and challenges that we must prepare for.

    I have flared up from the exercise from time to time, where it was very difficult to continue. Although exercise has not helped my FM directly, it has helped indirectly for me. I have lost some weight, sweat a lot during the work out, and my PMS (which is horrible for me) has improved by about 50%. All these things help my FM. When you sweat, you get rid of toxins in your body and just feel so much better.

    My moods are better, not completely but better. We really do have to plan plan plan when we have a chronic condition and................we cannot be hard on ourselves.

    Developing an exercise routine takes time, patience, and a lot of work, especially when we have so many issues. I do eat better now, which also helps.

    My massage therapist is proud of me, she says by body mass index in down, I am toned up, and she said taking it slow but steady is important for everyone, but especially us

    This was not easy to do, and I'm not trying to make it sound easy. It was one of the hardest things I have ever challenged myself to do, but the key is to pace yourself. I did not see any good results until at least 5 months, but now it is part of my everyday routine just like brushing my teeth. Thanks for the post. Hugs, Chelz.