How to Create a Symptom Management Plan

Email a Friend

By Bruce Campbell

(Note: Last in the series Treating ME/CFS and Fibromyalgia.)

If you read the articles in this series that outlined treatment options for the four main symptoms of ME/CFS and FM, you may be asking yourself, “How do I decide which options to try? How do I create a symptom management plan for myself?”

In this last article in the series, I’ll try to answer those questions by describing how I settled on my approach to ME/CFS, beginning with addressing fatigue, my most persistent and disruptive symptom.

I started by listing possible causes of my fatigue beyond CFS (as I called my condition), then analyzing them one by one. The causes I identified were:

Activity level (overexertion)
Pain
Poor sleep
Inactivity (de-conditioning)
Stress
Depression
Poor nutrition
Medications

Activity Level

Activity level seemed the most crucial to me. There was an obvious connection between the number of hours a day I was active and my fatigue, though the effects were sometimes delayed a day or two. My fatigue was worse if I was active for more than about four hours a day.

Rest produced a reduction in my exhaustion. Ironically, I found hope in this push and crash pattern. I reasoned that if the connection between activity and fatigue was so direct, then I might be able to gain some control if I found a level of activity that my body could tolerate.

So the key facts about CFS were the combination of the tight limits it imposed and the high cost of exceeding those limits. I spent a lot of time determining my limits, adjusting my life to fit within them, and then trying small experiments to expand my activity level.

I used a variety of pacing strategies, but if there was one secret to my recovery, it was my use of planned rests: twice a day for 15 minutes. Resting on a planned schedule greatly stabilized my life, enabling me to get off the push and crash roller coaster and giving me a much greater sense of control.

Inactivity (De-Conditioning)

Beyond activity level, the other factor that seemed especially promising was inactivity. I knew that even athletes become deconditioned if they stop exercising for even a brief time, so I was sure that part of my fatigue was due to my lower activity level and that the way to fight this was through exercise. The question was how much was both helpful and safe.

My solution was to experiment to find the length and intensity of exercise that produced an aerobic workout without increasing my symptoms, either during my workout or later.

Initially, that level was about 20 minutes of walking a day at a pace that raised my heart rate to 90 to 95 beats per minute. (This was a big step back from the days I hiked 15 to 20 miles a day.)

Improving Sleep

Improving my sleep also seemed worth pursuing. I knew from talking to other people with CFS that sleep was often not restorative if someone had CFS, but I thought I could help myself to some degree by maintaining good sleep-related habits.

My reasoning was that while CFS might be the major reason for nonrestorative sleep and not directly responsive to quick fixes, I could probably reduce my morning sluggishness if I maintained regular hours and avoided things like late nights on the computer or watching TV.

So I made it a rule to turn off the TV and stop using the computer at 9 p.m.

Pain

The final factor that I thought might be affecting my fatigue was pain. To the extent that I responded to pain by tensing up, I might increase my fatigue. Using relaxation was helpful, so I integrated a relaxation technique into my daily rests.

Stress and Emotions

In the first year or so, I focused my efforts on those four areas. Over time, however, I came to believe that stress was second only to overexertion as an intensifier of symptoms and it became a major area of focus. But it took me some time to recognize its effects and to explore ways to manage it.

Similarly, I was slow to recognize the role played by emotions in CFS. Recognizing those omissions taught me that I had to remain open to adjusting my approach as I deepened my understanding.

Medications and Nutrition

Lastly, I assumed that the final two factors on my list of possible causes of fatigue didn’t apply to me. Since I had decided not to take medications to treat my CFS, I was not worried about fatigue due to drugs.

And I thought my nutrition was probably adequate, because I had eaten a low-fat, mostly vegetarian diet for many years and I hadn’t experienced intestinal symptoms since coming down with CFS. I didn’t rule out looking at my diet at some point, but I decided to focus my initial efforts elsewhere.

Treatment Principles

In focusing initially on fatigue, I discovered two important principles that I was able to use many times. First, because a symptom can have multiple causes, it’s often helpful to use multiple strategies in response. And, second, finding what works often takes experimentation.

Once I developed my approach for addressing fatigue, I asked myself whether I needed additional strategies for my other major symptoms, specifically I wondered whether I needed separate strategies for brain fog and pain.

After observing the effects of my efforts to control fatigue, I concluded that all three symptoms were responsive to the same strategies, so that, by and large, I didn’t need separate strategies for each symptom.

Taking regular rests, limiting my activity level, and reducing the stress in my life worked on all three symptoms and also seemed to improve my mood as well.

By using self-management I was able to improve at a rate of about 1% per month and over about four years returned to my pre-CFS level of health, including taking long hiking trips like the ones I had done before CFS entered my life.

To create your symptom management plan, I suggest you work on one symptom at a time, beginning with the one that is most bothersome. To proceed, list and evaluate your options; settle on one or two and try it or them; evaluate the results; and, based on the results, refine your strategies or try new ones.