One of my sons' favorite pair of tennis shoes before I insisted they really were dead. This is what life with CFS can feel like, and you can't go to the store to get a new body very easily!
(As always, I am not a medical doctor. This information is based on my personal experiences and should not be substituted for medical diagnosis or treatment. Please speak to your health care providers about your personal situation.)
Everyone knows that when you exercise, you might feel tired initially, but all those endorphins you get pumping through your body will help you feel better in the long run. Soon exercising will increase your energy. Right? Wrong! This may be true for the majority of the population, but for those fighting chronic fatigue syndrome (CFS, also known as myalgic encephalomyelitis and systemic exertion intolerance disease) or Lyme disease,* the exact opposite may be true. Exercise has the potential to make these groups of people VERY sick for several days after they attempt to exercise.
This negative response of the body to exercise in the CFS population is known as post-exertional malaise (PEM). Studies have shown that PEM is not an exercise phobia: It is a physical response in those with CFS that does not exist in the healthy but sedentary control populations. While there are contradictory studies regarding fatigue related to CFS, they are problematic in their methodology because they aren’t evaluating patients the day after the testing to follow through: A study by Keller et al has demonstrated how the contradictory studies that aren’t evaluating the correct information on people with CFS and exercise impairment may overestimate the patients’ functionality by 50%. Thus, some patients with CFS can do well on a cardio test, but the next day, they won’t be able to move. Another study by Van Ness et al showed that 85% of the general control population had recovered from testing exercise 24 hours later, but ZERO percent of the CFS population had. That’s a huge difference in the world of statistical validity.
In addition, these studies that have patients doing 15+ minutes of cardio exercise are studies on the best coping patients in the CFS population. These are the people who complain that their CFS limits them to less than eight hours of activity a day as opposed to the people who, like I was previous for two years, are bedbound and unable to do more than take a shower and sit up for an hour daily. The worst of the worst in the CFS population are too sick to even consider participating in studies like these! They are the people who are counting their spoons very carefully, and they can’t spare energy for anything beyond basic bodily needs.
PEM is a hallmark of mitochondrial dysfunction for those in the CFS population. Dr. Amy Myhill was one of the first to develop a protocol to address the role of mitochondria in CFS, a protocol I tried in 2007 or so with limited success. As Myhill describes it:
Everyone knows that when you exercise, you might feel tired initially, but all those endorphins you get pumping through your body will help you feel better in the long run. Soon exercising will increase your energy. Right? Wrong! This may be true for the majority of the population, but for those fighting chronic fatigue syndrome (CFS, also known as myalgic encephalomyelitis and systemic exertion intolerance disease) or Lyme disease,* the exact opposite may be true. Exercise has the potential to make these groups of people VERY sick for several days after they attempt to exercise.
This negative response of the body to exercise in the CFS population is known as post-exertional malaise (PEM). Studies have shown that PEM is not an exercise phobia: It is a physical response in those with CFS that does not exist in the healthy but sedentary control populations. While there are contradictory studies regarding fatigue related to CFS, they are problematic in their methodology because they aren’t evaluating patients the day after the testing to follow through: A study by Keller et al has demonstrated how the contradictory studies that aren’t evaluating the correct information on people with CFS and exercise impairment may overestimate the patients’ functionality by 50%. Thus, some patients with CFS can do well on a cardio test, but the next day, they won’t be able to move. Another study by Van Ness et al showed that 85% of the general control population had recovered from testing exercise 24 hours later, but ZERO percent of the CFS population had. That’s a huge difference in the world of statistical validity.
In addition, these studies that have patients doing 15+ minutes of cardio exercise are studies on the best coping patients in the CFS population. These are the people who complain that their CFS limits them to less than eight hours of activity a day as opposed to the people who, like I was previous for two years, are bedbound and unable to do more than take a shower and sit up for an hour daily. The worst of the worst in the CFS population are too sick to even consider participating in studies like these! They are the people who are counting their spoons very carefully, and they can’t spare energy for anything beyond basic bodily needs.
PEM is a hallmark of mitochondrial dysfunction for those in the CFS population. Dr. Amy Myhill was one of the first to develop a protocol to address the role of mitochondria in CFS, a protocol I tried in 2007 or so with limited success. As Myhill describes it:
The job of mitochondria is to supply energy in the form of ATP (adenosine triphosphate). This is the universal currency of energy. It can be used for all sorts of biochemical jobs from muscle contraction to hormone production. When mitochondria fail, this results in poor supply of ATP, so cells go slow because they do not have the energy supply to function at a normal speed. This means that all bodily functions go slow.
In short, this means that the body’s batteries can’t get enough juice to power the rest of the body. If your batteries can’t recharge quickly and efficiently, then your ability to function is impaired. Anyone who has had a slow-to-charge cell phone or a laptop battery which couldn't hold a charge for long can get a rough impression of what is going on in a body with mitochondrial dysfunction. It becomes very frustrating and very limiting very quickly.
So how do those with PEM rectify this issue? Aside from protocols like the Myhill one, the best advice is to limit one’s activity on any given day to what one can tolerate. As Myhill phrases it, “Pace - do not use up energy faster than your mitos can supply it.” It’s a simple formula of supply and demand that also involves intuition and listening to one’s body. It also means understanding that while you may be able to walk a mile one day, for the next week you might not be able to walk 50 feet, and then in another week you can walk two miles. It’s an unpredictable roller coaster. I have learned the very hard way that when I start feeling certain pains in my body, I've overdone it, draining my mitochondria almost to their limits, and I need to stop whatever I’m doing immediately or the fallout will be terrible. Pushing myself to expand my limits, like I would have done with exercise when I was healthy, will only have terrible consequences. Thus, when my body says stop, I do it or I pay a very heavy price: I will experience what I call a crash or what many people would call a relapse. This crash will involve extreme fatigue that prevents me from doing anything but laying perfectly still on a horizontal surface while trying to endure the accompanying pain. It’s just not worth having to pay for an activity on the ensuing days. In previous years, my fallout rate would involve days or weeks of being crashed. Since beginning Lyme treatment, instead of paying for days or weeks, the fallout usually lasts no more than 24 hours, but it’s still too high of a price to pay for just a little more physical activity. I still have to strictly obey my body’s limits.
The issue of PEM contributed to the dysfunction in my previous marriage. My ex-husband was the one who had to take over when I crashed, intensely caring both for me and our young children instead of just caring for the children most of the time. Thus, he became incredibly fearful of my crashes and tried to limit my activity. He would tell me, “You can’t do that,” as a statement of fear-based control rather than love-based concern. He could not believe that I could discern when my body was going to crash once I learned to listen to it. Instead, he tried to hold me back from functioning at all rather than having to deal with the aftermath of the crash. While his concerns were understandable, the result was that it was miserable to try and do anything remotely social with him such as a walk in the park on one of my good days because he spent the entire time worrying about what the future might hold rather than enjoying the present moment. Even before we separated, I began avoiding activities with him for this very reason: I didn't want someone along who was going to make the activity miserable and anxiety filled, even if he was doing it from a justifiable place.
Researchers have recognized that post-exertional malaise is so conclusive of a symptom of CFS that it can be used to validly differentiate between the healthy and the CFS populations. However, that acceptance of PEM has not trickled down to most health practitioners or the general population. Most people still blindly believe that exercise is the cure for all that ails you. While exercise has been proven to help those with depression and a wide assortment of other health issues, those with CFS need to be very careful in how they use their limited energy in order not to cause further suffering. If you know people with CFS, please understand that they are not being obstinate or lazy in refusing to push their limits. Rather, they are protecting their own well-being by doing what their bodies tell them is best and that research has supported.
© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC
*I suspect a very large portion of the patients with CFS actually have late disseminated Lyme disease but have not been tested using the proper procedures. This was the case for me as I lived under a CFS diagnosis for six years before being diagnosed with Lyme. CFS and fibromyalgia remain my legal diagnoses because the CDC does not recognize late disseminated Lyme disease.
So how do those with PEM rectify this issue? Aside from protocols like the Myhill one, the best advice is to limit one’s activity on any given day to what one can tolerate. As Myhill phrases it, “Pace - do not use up energy faster than your mitos can supply it.” It’s a simple formula of supply and demand that also involves intuition and listening to one’s body. It also means understanding that while you may be able to walk a mile one day, for the next week you might not be able to walk 50 feet, and then in another week you can walk two miles. It’s an unpredictable roller coaster. I have learned the very hard way that when I start feeling certain pains in my body, I've overdone it, draining my mitochondria almost to their limits, and I need to stop whatever I’m doing immediately or the fallout will be terrible. Pushing myself to expand my limits, like I would have done with exercise when I was healthy, will only have terrible consequences. Thus, when my body says stop, I do it or I pay a very heavy price: I will experience what I call a crash or what many people would call a relapse. This crash will involve extreme fatigue that prevents me from doing anything but laying perfectly still on a horizontal surface while trying to endure the accompanying pain. It’s just not worth having to pay for an activity on the ensuing days. In previous years, my fallout rate would involve days or weeks of being crashed. Since beginning Lyme treatment, instead of paying for days or weeks, the fallout usually lasts no more than 24 hours, but it’s still too high of a price to pay for just a little more physical activity. I still have to strictly obey my body’s limits.
The issue of PEM contributed to the dysfunction in my previous marriage. My ex-husband was the one who had to take over when I crashed, intensely caring both for me and our young children instead of just caring for the children most of the time. Thus, he became incredibly fearful of my crashes and tried to limit my activity. He would tell me, “You can’t do that,” as a statement of fear-based control rather than love-based concern. He could not believe that I could discern when my body was going to crash once I learned to listen to it. Instead, he tried to hold me back from functioning at all rather than having to deal with the aftermath of the crash. While his concerns were understandable, the result was that it was miserable to try and do anything remotely social with him such as a walk in the park on one of my good days because he spent the entire time worrying about what the future might hold rather than enjoying the present moment. Even before we separated, I began avoiding activities with him for this very reason: I didn't want someone along who was going to make the activity miserable and anxiety filled, even if he was doing it from a justifiable place.
Researchers have recognized that post-exertional malaise is so conclusive of a symptom of CFS that it can be used to validly differentiate between the healthy and the CFS populations. However, that acceptance of PEM has not trickled down to most health practitioners or the general population. Most people still blindly believe that exercise is the cure for all that ails you. While exercise has been proven to help those with depression and a wide assortment of other health issues, those with CFS need to be very careful in how they use their limited energy in order not to cause further suffering. If you know people with CFS, please understand that they are not being obstinate or lazy in refusing to push their limits. Rather, they are protecting their own well-being by doing what their bodies tell them is best and that research has supported.
© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC
*I suspect a very large portion of the patients with CFS actually have late disseminated Lyme disease but have not been tested using the proper procedures. This was the case for me as I lived under a CFS diagnosis for six years before being diagnosed with Lyme. CFS and fibromyalgia remain my legal diagnoses because the CDC does not recognize late disseminated Lyme disease.
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