Living With Chronic Fatigue Syndrome

Articles, links, and tips for people living with Chronic Fatigue Syndrome and related illnesses.

The Science Behind Exercise Intolerance and Chronic Fatigue Syndrome

Posted by Catherine Morgan on September 1, 2007

post-exertional malaise

The Science Behind Exercise Intolerance and Chronic Fatigue Syndrome

The debate over the idea that exercise can help a patient with CFS, has caused many sufferers of this disease countless frustrations. As a patient myself, I can say that hearing a doctor claim that your symptoms will be better if you just push through the fatigue and begin to exercise regularly, is enough to make you want to scream.

Nobody tells a person with a broken leg, to just walk on it until it feels better. Or a person with lactose intolerance, to just drink milk until they don’t feel sick anymore. But for some reason, many doctors feel they need to tell patients with CFS that exercise will cure their fatigue, or the lack of exercise is what has caused it. It’s really infuriating.

The following are excerpts from an article about post-exertional malaise (fatigue after exercise or activity).

One thing patients and medical providers agree on is that CFS is characterized by post-exertional malaise, a term that often understates a “payback” that varies from escalation of widespread pain, to exhaustion requiring a recovery day in bed, to serious relapse of the entire CFS symptom complex: the cognitive dysfunction, flu-like achiness, fatigue, low grade fevers, lymph node tenderness and disturbed sleep patterns of weeks or months duration.

If you don’t have CFS, then you can not even begin to imagine the extent of these symptoms. But let me assure you as both a nurse and a patient, these symptoms are very real.

Have compassion for your patients, your family, or your friends with this condition. Living with Chronic Fatigue Syndrome is not easy, but it is a little easier when people in our lives are supportive. And quite frankly, not enough of you are. For more information about this, please see my post on empathy.

Post-exertional malaise has always been considered a defining feature of CFS, although we are still uncertain why it occurs (Fukuda). A recent genomics paper clearly demonstrated a difference, using gene array technology, between CFS patients and controls before and after exercise (Whistler).

This finding may be unique to CFS.

The CFS patients had almost a 20% drop in VO2 on Day 2 compared to normal, deconditioned controls who achieved the same VO2 on Day 1 and Day 2 of exercise testing. In another study, the same research team objectively demonstrated a decline in cognitive function in 20 CFS patients 30 minutes and 24 hours after a graded cardiopulmonary exercise test compared to pre-exercise levels, with no such observed change in the 20 age matched deconditioned controls (VanNess, unpublished manuscript).

A related concept is the idea that a “threshold” exists at which something pathologic happens in the body because of exercise or activity, and that exceeding the threshold causes post-exertional malaise. Knowing exactly what happens at the threshold, where the threshold is, and how we can raise the threshold are questions that have proven difficult to answer, at least in some patients.

This is a not a foreign concept in medicine.

A diabetic can develop life-threatening hypoglycemia from exercise. Exercise converts asymptomatic coronary artery disease to ischemia, infarction, and fatal arrhythmia. Certain asthmatics develop severe bronchospasm from exercise.

In some instances of CFS exercise can be helpful in moderation, but it is very important that each patient be evaluated based on their individual needs. What works for one person will not work for another, that is why understanding and patience by medical professionals is so important.

In each of these disorders, while potentially deadly, exercise is also an important therapeutic intervention. In each case, exercise is safe if:

  • The underlying condition is well defined and under good control,
  • A safe level and type of exercise are prescribed,
  • And the patient is meticulously educated regarding how to exercise and how to recognize signs that exercise should be limited.
  • In the absence of adequate information about CFS, we should prescribe exercise with the same cautious and attentive approach we might use if we had inadequate clinical information and treatments for our asthmatic, diabetic or cardiac patient. We can still utilize exercise therapeutically if we respect what we do not know, and utilize what we do know from research, clinical experience and the observations of our patients.

    Patients with CFS who are unable to remain active become deconditioned, but their ability to tolerate exercise stress and raise the threshold may be impaired compared to normal individuals. Indeed, recent studies published by the CDC Computational Challenge teams suggest that CFS patients may have more difficulty than others recovering from common physical stressors, as measured by increased allostatic load (Maloney). It is possible that some stressors leave a mark or permanent injury in patients with CFS, as if their normal stress response and recovery mechanisms are dysregulated or chronically depleted.

    It’s important to understand both the science of this condition, and the individuality of the patients. This is a medical problem, with symptoms that affect the whole person, which is why a holistic approach to treatment is needed.

    In addition to physical deconditioning, there are many partially understood aspects of CFS, well established in the literature, that might contribute to an exercise threshold, the exceeding of which could result in pathologic injury. This might include:

  • Defects of oxidative metabolism,
  • Dysregulation of the autonomic nervous system and HPA-axis (CRH, cortisol and aldosterone),
  • Presence of chronic or latent reactivating infection,
  • Dysregulated immune or inflammatory systems (cytokine production, natural killer cell function, complement activation)
  • And other yet-to-be clarified processes.
  • An understanding of why these symptoms occur, is not as important as an acceptance of this condition as real.

    It is not difficult to imagine an exercise or activity threshold in someone with CFS after which the body experiences physiologic injury that contributes to post-exertional malaise. It is not necessary to understand this before we respect it.

    There is no doubt that my hundreds of patients who meet the CFS case definition exhibit a wide spectrum of exercise tolerance.

    n On one end of the spectrum (perhaps a Fibromyalgia patient with metabolic syndrome who meets the CFS Case Definition), the response to graded exercise is satisfying and clinically helpful. These patients can gradually increase their strength and aerobic capacity with proper conditioning, resulting in weight loss, better energy, improved pain and fatigue. Some even recover a higher level of function, although the Fibromyalgia symptoms usually remain to some degree.

    n On the opposite end of the exercise tolerance spectrum are certain CFS patients who invariably experience a severe relapse of symptoms after attempting to increase their physical activity, either immediately or within a few weeks. It seems that even the more healthy patients of this subset must reduce other activities in order to substitute and sustain a low level exercise regimen.

    The point is that we don’t need to understand all aspects of CFS or even be able to objectively subset our patients to begin sensibly utilizing physical conditioning to improve their health. From the clinical standpoint, our patient population will always be heterogeneous. There will always be a spectrum of contributing factors, including primary etiology, stage, co-morbid conditions (including obesity and deconditioning), severity of pain and secondary relapse symptoms, age, plus a variety of personal skills, resources, motivation and discipline. It is possible to adapt exercise advice compassionately and intelligently to the individual situation.

    The following are some ideas about how to help your CFS patients discover how they can best improve their physical conditioning, given their particular level or type of illness.

    Don’t Call It “Exercise”

    We all, patients and providers, have inflated perceptions about what the word exercise means. Instead of asking about exercise, try: “What are you able to do

    …to keep your muscles from becoming weak?

    …to keep your body moving?

    …to stay strong and flexible?

    …to work on physical conditioning?”

    I hope this new information will be a step in the right direction toward the understanding and acceptance of Chronic Fatigue Syndrome. For more information you can read the full article from ProHealth “Chronic Fatigue Syndrome and the Exercise Conundrum“.

    Also See:

    Fighting Fatigue – Effects of Exercise in CFS

    Tips on Healthy Living With Chronic Illness

    You can see more informative videos about Chronic Fatigue Syndrome and Fibromyalgia at my video page.

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    8 Responses to “The Science Behind Exercise Intolerance and Chronic Fatigue Syndrome”

    1. rockycha said

      I’m living proof that exercise doesn’t improve my CFS, let alone cure it. I had that idea a couple of years ago. “I’ll train and exercise every day and then I’ll be cured.” My goal – backpack in Yellowstone for 50 miles. I started training in February, my first walks were less than 10 minutes. I would come home and fall asleep immediately from the strain. I was able to improve my stamina – I successfully achieved being able to walk 4 miles with a 40lb pack on by July. Still, after each training session, every single time, I came home, and immediately collapsed. When we got to Yellowstone in August, the weather wasn’t with us. Plans changed to a 20 mile trip. The first day, we hiked in 3.5 miles, the first time with the complete pack on. We got to the campsite & I collapsed as usual. Fortunately for me, snow was threatening and we hiked back out and gave up on that dream. I still have that dream, and am working on my CFS. But I am certain that exercise stamina has no relationship to CFS. Even though I could hike that distance, I never felt one iota better – not one. carrie rockycha.wordpress.com

    2. Hi “Rockycha”

      Thanks for sharing your story. I think people with CFS are strong capable people, that can (when needed) push themselves to do many things. However, with CFS the problem is always “after”. The recovery time for a few minutes of exercise, can be days or even weeks. The more you push yourself the longer your recovery will be, it’s a fact we need to accept, and then we can decide what activities are worth the consequence.

      Thanks again for your comment.

    3. Pat Hess said

      I understand your frustration, but I have exercised my way to a significantly improved lifestyle. It wasn’t easy, but I increased my exercise time from 20 min per day to 2 1/2 hours per day, 6 days per week, then added dancing 2 nights per week. Still working. I was tired all of the time, of course, and spent much couch time in the beginning. But now I can shop, go to the grocery store, take in a movie, and was able to do some hiking last summer. I still dance. Still not cured, of course. But greatly improved stamina and strength that has really been worth it. Also got rid of all of the pain. Check out Geoff Gluckman, Musclebalancefunction.com.

    4. I can’t imagine that exercise would help me and my lupus/cfs/fibromyalgia. Sometimes breathing is difficult enough, thanks goodness it’s involuntary! Unless you suffer from chronic fatigue, I don’t think you would understand that.

      That was a great post- thanks for posting it. It helps me feel better for refusing to create more pain for myself by exercising!

      Blessings and God’s comfort,

      Glenys

    5. Rick said

      great article and post.

      I was diagnosed with CFIDS in 1993. It’s MUCH better now, but my ability to exercise is nowhere near what it once was. The concept of ‘threshold’ is very real for me and what I’ve found is that it’s important for all of us to exercise as regularly as we can provided we do not cross that threshold. Our bodies require movement to sustain fundamental health and a total lack of movement is going to dramatically accelerate the degeneration process. The key in my experience has been finding that threshold and respecting it. Years back that meant a 10 minute walk. So that’s what I did as close to daily as possible. I now find that my threshold is also impacted by what I am able to do or not do immediately after exercise. So during my work day I can walk for 15-20 minutes at lunch, no problem. If I want to go have a 3 hour golf practice session and hit 400 balls, I need to schedule a few hours afterwards to be able to refuel and then rest. For me, getting horizontal and relaxing for an hour after exercise makes a big difference in how I do the next day.

      I’ll share two other things that have really helped me. One is diet modifications. I’ve decreased the amount of processed and cooked foods I eat and increased the amount of raw foods, making use of some raw superfood mixes that have been a tremendous blessing.

      The other has been The Egoscue Method. To the degree our posture is compromised, our musculoskeletal systems just can’t work properly and it takes more effort to do simple tasks than it should, and that’s true for people without CFS, too. I started as a client with Egoscue in 1997 trying to heal a back that was devastated from a near fatal car accident that definitely contributed to my onset of CFIDS. I’d tried everything else I could find with limited success. The results from Egoscue were spectacular and made such a profound difference in my life that I eventually went through the training to become a therapist and am now the clinic director of the Egoscue Clinic in Austin, TX. I would STRONGLY recommend Pete Egoscue’s book “Pain Free” to anyone, but especially people with fibro and CFS. Fatigue sucks motion from our lives, and motion is the fuel that creates and sustains postural balance, so it’s easy for people with fatigue to begin to lose postural balance, which brings a host of other issues with it.

      I want to clarify, I am NOT trying to solicit business for any Egoscue clinic, and I don’t make a penny if someone buys one of Pete’s books. But in my job I work daily with people in pain, and I see a lot of folks with fibro and CFS and I see firsthand how important it is to maintain postural integrity. I will not post my email or contact info here because I don’t want this post to be construed incorrectly. If anyone would like more detailed advice on any of this, I’d be happy to help. You can find our clinic’s contact info at the Egoscue web page. Just Google it and you’ll find it.

      I salute the woman who runs this blog. It takes a lot of effort, mental and physical, to do it. This is great information. We have an epidemic of people suffering from fibro, CFS, Lupus, MS and a host of other related issues. The mainstream medical community is not going to lead us to our promised land so our best bet is to lean upon and learn from each other.

    6. Caren Henderson said

      I totally agree with the concept of “threshold” which is probably different for everyone. Has anyone experienced problems with muscles just not firing which leads to smaller muscles trying to compensate? I can get them “turned on” through various alternative treatments but they never hold for more than a couple of days. I can go run two miles when they are on and the next day I can’t walk around the block.

    7. Caren……that can happen for a number of reasons but the most common is posture. If a joint is out of position, the muscles that attach to it cannot work normally. Some muscles will be over-facilitated and want to work all the time, and others will be the opposite. The key is to get your body back into as neutral a postural position as possible and that takes motion stimulus, not just manipulation or ‘treatments’.

      I would strongly encourage you to read the first three chapters of Pain Free by Pete Egoscue, then call the clinic nearest you and ask them for some advice and help in how to start implementing these concepts. We’ll help people get started with the books at no charge.

    8. gw265ster said

      I agree with the “threshold” idea about exercising. I thought I was just unfit, but this year I’ve had a good illustration of this threshold.
      I’ve had CFS for nearly 8 years. I’ve been lucky in that the only main symptom has been post-exertional malaise (other than a couple of months of being bedridden in 2003). I have been able to do low-level exercise like walking and slow swimming with no problems – even to the extent of mountain-walking holidays of several weeks’ duration, walking >30km/day. However 10 minutes of jogging, rowing, fast swimming, circuits or whatever, has been enough to put me in bed for 2 days.
      This summer I went on a particularly tough walking trip to Svalbard, and spent 3 weeks climbing mountains etc. I came back feeling great, and discovered that I could now run, swim, do whatever I felt like: no threshold. I spent September -> December running 10km/day and swimming 2km/day, though all the time making sure I ate and slept well, trying to avoid a CFS relapse. All of a sudden this week the threshold has returned, and swimming 1km makes me feel like I have the ‘flu. Five days in I still feel like that every day, but don’t have a cold.

      I’m not unfit. VO2 max tests suggest I was even quite fit before the walking holiday, and super-fit after it. But I predict that a VO2 max done now (having gone swimming today) will show massively less capacity than a week ago. Something’s making some pathological process take off above some (annoyingly low) level of exertion.

      What _IS_ really interesting though, is that despite feeling totally lousy, I can actually still do the exercise. I can still run 10km, though a week ago I wanted to, and now I very definitely don’t because it seriously hurts. Back 15 years ago when I was so unfit that I wouldn’t have been able to run 10km, i couldn’t do it even if I pushed myself really really hard. Now, my muscles ache and I feel flu-ish, tired and miserable, but the actual running isn’t particularly difficult.

      So there’s definitely not a linear relationship between CFS and fitness!

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