Exercise Success Stories

By Bruce Campbell

If you have fibromyalgia or Chronic Fatigue Syndrome (CFS, also called ME/CFS), you've probably heard the advice to exercise, but if exercise has triggered relapses, you may be unsure how to do it safely.

Start Low and Go Slow

One secret to success is to follow the motto "Start Low and Go Slow."

Start low means find an amount of exercise that does not increase your symptoms. (For people with moderate to severe CFS, this can mean alternating very brief periods of exercise with longer periods of rest.) Go slow means extend the amount of exercise very gradually, as tolerated by the body.

The experience of three people in our program illustrate these principles.

Elena has used pacing and short-term goal setting to improve from 25% of normal in 2008 to 80% in 2014. With the idea in mind of setting a realistic goal, she began by setting a goal to walk 1/16th of a mile every day (that's about one football field in length) at a very slow pace.

Once a week, if she was having a good day she started walking ten or twenty feet further. She increased the distance a little at a time, "as long as I experienced no increase in my symptoms."

As time went on, she found that she could walk further with no increase in symptoms if she took a short rest in the middle of her walk and this allowed her to walk even further. She writes, "Now I walk four miles virtually every day."

Pat functioned at about 20% of normal for several years but when I got together with her recently seemed to be functioning at about 50% or so. She told me that she had started to exercise by walking to the corner mail box once a week and expanding the distance very gradually, just like Elena.

Remembering times when we walked together in the past and she alternated a few minutes of walking with five minutes of rest, I was surprised recently when she suggested we go hiking together and even more surprised when she took no rest breaks during our two-hour walk.

Exercising Safely While Bedbound

Sheila is a bedbound patient with very severe CFS. Her experience illustrates another important aspect of exercise with CFS and fibro.

The first goal for exercise should be to do activities of daily living (ADLs), such as feeding yourself, bathing and dressing, and household chores, without intensifying symptoms. Once that is achieved, it is appropriate to move on to a formal exercise routine.

To suggest the severity of Sheila's CFS, let me quote from a post she made to one of our groups recently:

"If I wash my hair, that is one whole day's activity, and I generally need a total rest day before and after. Just washing my hair consumes a huge amount of time, which reduces the amount of time available for other things."

But she was also able to report recent progress. She has a goal to wash her hair without triggering excessive fatigue and exhaustion (Post-Exertional Malaise).

She has broken that goal down into small steps, each of which is small enough for her to manage without triggering post-exertional malaise. Her first step: holding her arms above her head for 30 seconds each morning.

She told her group that she had been doing that for three months and "I'm really pleased to say that it is paying off. The last three times I have washed my hair it has been noticeably easier and significantly less tiring, and I'm no longer worried about not being able to do it. I am really very pleased that I have actually managed to build up some strength. It makes me think I might be able to build back up to other things."

Heart Rate Monitors

Other people in our program have learned to be active safely by using a heart rate monitor. Because post-exertional malaise (PEM) can be triggered when the heart rate goes beyond a personal limit, keeping the heart rate below the limit is a way to avoid PEM. (For more, see the article Pacing By Numbers: Using Your Heart Rate to Stay Inside the Energy Envelope.)

One person bedbound with CFS says "When I can manage to get up and move around, but keep my heart rate below 105 beats per minute [her limit], then I know I am safe to continue to do so."

Others have reported that wearing a monitor made them aware of previously unknown limits. In the words of one person, "Just getting the heart rate monitor was a huge eye opener for me...Everything put me over the threshold" Another said, "It was quite shocking to find that I operated routinely above my [limit]."

Awareness of limits can suggest how to change. One person found that just going up a flight of stairs pushed her heart rate beyond her threshold. Her solution was to stop halfway and rest. Another person says that lifting her daughter used to push her over the edge. Her solution was to sit down and have the child climb into her lap.

Pedometers

And still other people have found and stay within their limits by using a pedometer or step counter. The first goal with a pedometer is to use it to determine your current activity level and its effects on your symptoms.

If you wear a pedometer for several days, you should get a good idea of how many steps you are now taking per day and can correlate that with your symptom level. (For more, see the article Pedometers: A Tool for Pacing.)

Once you have found your current limits, you can use the pedometer to help you stay within them. As one person says, "There are many days I feel I can do more, but if I do I crash and burn. [My pedometer] is a wonderful device for reminding me how much I have done and how much I have left in my energy envelope for that day."

Another person told us that she found her limits by correlating her steps with her symptoms. She said, "If I had a high number [of steps in a day], it matched the overexertion levels and how awful I felt that night and the next few days."

She discovered that initially she could walk only a few hundred steps a day without intensifying her symptoms, though she was gradually able to expand that to about 2,000.