Experiments with Exercise

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By Bruce Campbell

(Note: People with fibromyalgia and ME/CFS often view exercise as a way to improve fitness and control symptoms. This article, adapted from the website Recovery from Chronic Fatigue Syndrome: One Person's Story, describes how reflecting on exercise can produce general insights about coping with long-term illness.)

After having Chronic Fatigue Syndrome (CFS) for several months, I came to view living with my illness as a series of experiments that I called being my own "CFS scientist." One area of experimentation was exercise.

I tried different forms of exercise and different lengths of time in order to determine how much exercise was both safe and helpful. In the process, I learned many lessons about my illness in general.

Finding Exercise Limits

I wanted to exercise, both because I enjoy exercise and because I thought that it would help reduce the part of my fatigue that was caused by deconditioning. But how much was safe? I decided to experiment. I tried walking for different lengths of time and at different speeds, keeping notes of how I felt both during and after exercise.

I found that if I walked for about 20 minutes at a speed that pushed my heart rate up to but not beyond 95 beats per minute, I could get some aerobic value without making my symptoms worse.

The experience helped me understand the value of trying experiments and of keeping simple records to find my limits. I then applied that approach in other areas of my life to determine limits for activities like driving, standing, doing laundry and housecleaning, time on the computer, and time to go to bed. Every time I found a limit and began to honor it, I gained more control over my CFS.

Time of Day

Through experimenting with walking at different times of day, I discovered that exercising in the afternoon was much less likely to lead to a higher level of symptoms than exercise in the morning.

If I walked in the morning, 20 minutes was likely to tire me out, but the same amount done in the afternoon did not produce much, if any, increase in my symptoms.

So one lesson I learned from experimenting with exercise was that when I did it was as important as how much I did.

This realization led me to ask whether this was true generally. I found that my illness had a pattern. I often woke up feeling tired, no matter how many hours I slept. My symptoms were generally at their peak in the morning, but I had a period of several hours from mid-afternoon through mid-evening when they decreased.

I found consolation in this insight. If I could get through the morning, I knew I had some good hours coming. Also, if I had something important to do, it was better to schedule it in the afternoon.

Delayed Reactions

There were days when I felt so good during my walk that I decided to extend it beyond my usual 20 minutes. Sometimes I went as long as 40 minutes, without any increase in symptoms while I was walking. I soon realized, however, that when I walked longer than usual I had a higher level of symptoms later that day or even the next day.

The realization that the effects of exercise might be delayed prompted me to ask whether this was true of activity in general. After some record keeping, I concluded that it was and, more disturbingly, that I could not trust the signals sent from my body.

As a healthy person, I used fatigue and other clues from my body as a way to tell me to slow down or take a rest. But with CFS, the signal was delayed, sometimes by hours or even a day or two.

So I was faced with the question: how can I control my symptoms if I can't trust my body to warn me when I am overdoing it? I decided to keep careful records of my activities and symptoms, correlating activity level with subsequent increases or decreases in symptoms.

Over time, I discovered how long I engage in various types of activity without triggering an increase in symptoms. Limiting my activity to amounts of time I had learned were safe gave me a way to gain control, when I couldn't trust my body's signals.

All Activity is Exercise

On some days, I felt quite tired even when I walked my usual amount. I wondered whether it might be due to poor sleep the night before or because of stress. While those factors sometimes explained the extra fatigue, I decided that a more frequent explanation was my total activity level.

Checking my records, I discovered that times of increased symptoms were often associated with days I did laundry, housecleaning, grocery shopping, cooking or some combination of those activities. All of them required that I be physically active while standing.

This led me to state a rule for myself: "All physical activity is exercise." My energy level was so low when I first got CFS (about one quarter of my pre-illness level) that I needed to be aware of all my activity. For several years, I noted household chores and shopping in the "exercise" column of my health log.

The Body is in Control

It felt unfair to be able to walk 20 minutes or so and feel fine afterwards, but to have to spend an hour in bed if I walked 40 minutes. The difference was so small in comparison to the long hikes I had done when healthy, that it seemed I was being punished disproportionately by CFS for going only a little outside my limit.

Painful as it was to realize how little "cushion" I had, how tight my limits were, the discovery led to a recognition that there was no way I could argue with my illness or persuade it that it was being unfair to me. I learned that I couldn't expect a "free day" if I had been good for a week.

The recognition that my body was in control, not me, was a crucial part of acceptance: like it or not, that was my situation. In other circumstances earlier in my life, I might have been able to ignore my body by staying up late and just pushing through to finish a project. But CFS had reversed my relationship to my body: now the body was in charge.

Exercise and Rest

Two years after coming down with CFS, I was walking about a half hour a day, not much different from the 20 minutes or so when I was first sick. I was finally able to expand my exercise in a significant way when I incorporated rests into my walks.

In retrospect, I am surprised that it took me so long to recognize that rests could help my exercise endurance, given my use of daily rests at home. I believe that scheduled rests were perhaps the single most important thing I did to aid my recovery.

I discovered how to apply rest to exercise when I went walking one day with a friend with CFS, a person who had a more severe case than mine. She stopped frequently, about once every five minutes. I noticed that I wasn't at all tired at the end of our hour-long walk, and asked myself whether I might be able to extend the length of my walks by incorporating rest into them.

So I tried an experiment. The next day I walked for 20 minutes, then sat on a bench for a 20 minutes, then walked some more. It worked! I was able to walk significantly farther than before by including a long rest in the middle. This was a big psychological breakthrough, as it opened the possibility of longer walks without increases in symptoms.

I was able to extend gradually the distance I could walk, as long as I alternated periods of walking with equally long periods of rest. Planned rests during exercise also enabled me to begin walking again in areas with uphill stretches.

Uneven Recovery

Three years after becoming ill, I was able to walk on occasion as much as seven miles, a big improvement on 20 minutes a day but roughly a third of what I could do before CFS. I felt discouraged when I compared myself to the past, but was helped by noting that my recovery overall put me back to about 75% of normal.

The experience helped me to see that my recovery was uneven, better in some areas than in others, with exercise tolerance lagging the most.

Exercise and Loss

The final lesson that exercise taught me was about the power of emotions in CFS. I took most of my walks along a part of San Francisco Bay close to my home. For a while, I looked longingly up at the mountains I used to hike in and wondered whether I would ever be able to walk there again. I found it so painful to look at the mountains that I forced myself to keep my gaze on the Bay.

The strong emotions triggered by looking at nearby mountains helped me to realize how big a part loss played in my experience of CFS. Acknowledging loss and focusing on what I still could do were the solution, as I explained in another article.

Conclusion

In all these different ways, exercise was a good teacher. Through reflecting on my experiences with walking, I learned a lot about how to live with Chronic Fatigue Syndrome.