Experimentation

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By Bruce Campbell

(Note: Second in a five-part series on self-management skills.)

Finding what works through trial and error is another skill for successful self-management. Since no medication is consistently effective for people with ME/CFS and FM, you can use experimentation to find what medications are helpful for you.

Experimentation applies to lifestyle change as well, trying different strategies to see which help you and how best to use them. For example, you can experiment to find how many rests you need each day and how long they should last; how much exercise you can tolerate; how long you can drive; how much computer work you can handle without intensifying your symptoms; how long you can spend on the phone, etc.

We sometimes call this process of trial and error being your own ME/CFS or fibromyalgia scientist, a process in which you are both a researcher and your own research subject. You generate lots of experimental data just by living your life. For example, you probably feel different in the morning when you go to bed at different hours and you probably have different symptom levels when you are more active than when you rest more.

In addition, you can generate more systematic data by deliberately varying your patterns and activities. Many people in our program, for example, try scheduled rests. By experimenting with the number and length of rests, they get an idea of what works best for them.
 

Experimentation and Rest

One person who tried this was a woman with severe ME/CFS who became tired with almost any exertion. It was as if her batteries ran down very quickly and needed frequent recharging. She was able to reduce her total rest time dramatically by using frequent short rest periods.

Before taking our course, she took two three-hour naps a day. After learning about brief scheduled rests, she decided to break up her day into one- and two-hour blocks, and to take a 10 to 15 minute rest during each block.

Over a period of two months, she reduced her total rest time by an hour and a half. After six months, she had cut her rest time down to three hours a day. By resting in small blocks, she added three hours of activity time to her day without increasing her symptoms.

A second person experimented with resting while doing errands. Instead of going until she collapsed, she created a place to lie down in her van and took a 15 minute rest break after each errand. As a result, her trips were less tiring and resulted in less time spent resting, because she didn't need rest after returning home.
 

Experimentation and Time of Day

Most people with ME/CFS and FM find they have better and worse times of the day. For some, mornings are good, while others perk up later in the day. It's likely you can get more done, without intensifying your symptoms, by experimenting with when you do things, so that you use your best hours for the most important or most demanding tasks.

One person in our program wrote, "If I walk in the evening, I can make it around two blocks, but three has me collapsing. Early in the day, I can do three or more. I have a window between 8 and 11 in the morning that is best for most activity, both mental and physical."

Another person was bothered by the effects of brain fog on her ability to read and retain information. She was able to read for only a half hour if she studied in the morning and had trouble remembering what she read.

Then she decided to experiment with studying in the afternoon. She found that she had good mental stamina for several hours if she read then after taking a brief rest. After her rest, she could read for two 30-minute sessions with a short break in the middle and retain the information.

Over time, she expanded her study time to a total of two hours a day. Experimenting with time of day enabled her to increase the length of her study time while increasing her comprehension.
 

Learning from Failure

In addition to providing many insights, taking an experimental approach also has an important psychological effect. It helps us to accept and learn from apparent failure. For example, I was confused by the excessive tiredness I experienced one day after my daily walk. Asking myself what was different, I realized that I had walked in the morning rather than at my usual time in the afternoon. That insight was how I learned about the importance of time of day.

Thinking about my exercise experience also helped me to understand the idea of delayed reactions, which led to one of the most important insights I ever had about how to live successfully with ME/CFS. There were times when I walked longer than normal, but experienced no increase in symptoms while I was walking. The effects were apparent only later in the day or even the next day.

That realization led to recognition that the effects of activity in general were often delayed and 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 that I would have to define my limits through trial and error, which I did by keeping records of activity and symptoms. Once I understood my activity limits, I could free myself from the cycles of push and crash, because I knew when to stop, even if my body didn't send me a signal at the time.

Living within my limits enabled me to regain control of my life. I shifted from living in response to symptoms to living my life according to a plan. I hope can use experimentation to increase your sense of control.