Recovery from CFIDS: What Worked for Me, Part 1
By Bruce Campbell
(Note: This is an expanded version of an article published in the CFIDS Chronicle as a two-part series in Spring and Summer 2002. The earlier version is also available on our site as Using Self-Help to Recover from CFIDS. For a lengthier account taking the story through 2020, see Recovery from Chronic Fatigue Syndrome: One Person's Story.)
I became ill with CFIDS in the summer of 1997. My symptoms worsened over the first few months I was ill. During that period I gradually reduced my time at work to 15 hours a week, then stopped working entirely. I functioned at about 25% of my pre-illness level.
Today, five years later, I consider myself to be recovered. I no longer experience symptoms of CFIDS and have an activity level comparable to that of other people of my age.
My improvement has been gradual but steady, about one or two percent a month. I don't know whether my recovery will last, but I am encouraged by the fact that my progress has been reasonably even with no major setbacks.
The path I followed was an unusual one. Believing that there was little that either conventional and alternative medicine had to offer me, I decided to forego the search for a medical cure, instead focusing on what I could do myself to feel better.
I write this account of my use of self-help and lifestyle change as a treatment for CFIDS in the hope that others might find encouragement from my experience.
The Context of Recovery
My efforts to improve occurred in a context shaped by two important factors over which I had little control. Luckily, both supported my recovery. The first was the severity and complexity of my illness. I had a moderate case of CFIDS. Though significantly limited by the illness, I was slightly better off than the average patient in the severity of my symptoms.
I would also add that it is a mark of the devastation created by CFIDS that having a case which takes away 75% of functioning can be called "moderate." I was also fortunate in having only CFIDS, uncomplicated by other illnesses such as fibromyalgia or chemical sensitivity.
Second, my life circumstances helped promote improvement. I was in my early 50's when I got sick, old enough to have created a financial cushion for myself. I was not stressed by the financial pressures that many CFIDS patients face. Having financial reserves allowed me to quit working and focus on getting better.
Also, I received understanding and support from my family and closest friends. They accepted that my illness was real and supported my decision to pursue improvement in the way I will describe below.
The support of a close friend was particularly helpful. We talked frequently about my illness. Every month, both of us rated my progress on the CFS & Fibromyalgia Rating Scale. The discussions helped me to be more realistic about my progress. Also, her interest in helping me communicated that I wasn't alone in my efforts to improve.
A final element in my life circumstances was the fact that I lived alone. Although it could be frightening on the days I was too sick to get to the grocery store, living alone gave me the opportunity to live my life as I thought necessary for my recovery. I had the freedom to organize my life in the way I believed would maximize my chances for improvement.
In all the ways just described, my situation was helpful to recovery. My illness was moderate in comparison to that of some patients. And my life circumstances were much less stressful than those of some patients. I take no credit for these factors. They were "givens" in my situation, a matter of good luck.
What Worked For Me
CFIDS was comprehensive in its effects, touching every aspect of my life from my ability to work to my moods, finances, relationships and hopes for the future. In response, I used a variety of self-help strategies. I believe seven were crucial to my recovery. I'll discuss several of them in this article, then conclude with more in Part 2.
Accepting Responsibility for Helping Myself
My response to CFIDS was shaped by my previous experience as a consultant to self-help programs at the Stanford University Medical School. The programs, which were complementary to regular medical care, taught me to ask two questions when facing a health problem:
- What help does the medical system offer?
- How can I help myself?
As soon as I received a CFIDS diagnosis, I went to the local health library. A few hours' reading convinced me that medical resources for CFIDS patients were very limited.
It was clear that there was no medical cure for CFIDS. The prospects of developing one in the near future seemed dim, because there was no agreement on the cause of CFIDS and very little money was being put into research.
It was also discouraging to read that there was no standard treatment for CFIDS, that is, no commonly prescribed medication given routinely to CFIDS patients. Rather, patients had to try a variety of different treatments in the hope of finding something that worked.
What one person found helpful might be ineffective with another. I concluded that the best a medical approach had to offer was modest symptom improvement, probably requiring a long period of experimentation.
I decided on the spot to forego that approach. Rather than experimenting with many treatments in the hope of achieving minor symptom improvement, I decided to accept responsibility for getting better. In contrast to an approach with a very uncertain outcome, I felt confident I could find things that would help me improve.
My work at Stanford with medical self-help programs had convinced me that how one lives with chronic illness can change its effects and may even change the course of illness.
Since I had an illness for which the medical resources were very limited, I decided to focus on the second question I had learned at Stanford, asking what I could do to help myself.
My decision did not imply a rejection of medicine in general or of my doctor. I checked in with him monthly by phone to keep him apprised of my progress and continued to see him for other medical problems. He was supportive of my approach to CFIDS.
Had my symptoms been more severe, I might have combined a self-help approach with a medical one. But under the circumstances I found myself in, I judged that using self-help exclusively offered me the best chance to control symptoms and improve my quality of life.
Combining Acceptance of CFIDS with Hope for Improvement
For more than a year after becoming sick, I wondered whether I should make recovery my goal. I found recovery a hard standard to live with. Having the goal of recovery condemned me to an emotional roller coaster, in which I was encouraged by my progress but devastated by the inevitable setbacks.
The dilemma helped me to understand the distinction between those things I could control and those I couldn't. I finally concluded that whether I recovered was out of my hands, but that there were many things I could do to improve my quality of life.
At the same time, I believed that those things that helped me feel better also could lead to recovery, if that proved possible for me. In other words, I came to believe that recovery was out of my hands. All I could do was to create conditions conducive to it. By suspending expectations about recovery, I could focus on what I could do to make my life better.
I also concluded that I was being realistic to focus on improvement rather than recovery. In reading about CFIDS and getting to know other patients, I decided that possibly as few as 5% of patients recovered. To avoid likely disappointment, I decided to assume I was part of the 95% who didn't and to focus on finding ways to lead a meaningful life even if I didn't recover.
I found inspiration in the words of Dean Anderson, a CFIDS patient whose recovery story is in the Success Stories area on this site. He described how he combined acceptance of being ill with hope for a better life, defining acceptance not as resignation, but rather "an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life."
I adopted his formulation as my own approach to CFIDS, saying "accepting that I am ill is what I have to do for now."
Acknowledging Limits: The Energy Envelope
Living with CFIDS was very frustrating. The illness imposed tight and seemingly inflexible limits, punishing me disproportionately for any infractions. I could walk for 15 minutes most days without intensifying symptoms, but 25 minutes might send me to bed for an hour.
It helped to remember the distinction between acute and chronic illness. Acute or short-term illnesses are temporary problems, conditions in which the diagnosis and treatment are clear and the outcome is usually predictable and positive. Such illnesses can be cured by medical help or are self-limiting.
Chronic illness is different. Instead of interrupting life briefly, it imposes long-term limits and forces patients to adjust their lives to it. Because of limits and uncertainty about final outcome, there is often a high level of frustration and a sense of helplessness.
Like many other patients, I learned that using an "acute illness" approach to symptoms didn't work. If I tried to ignore my body and just "push through," my symptoms were intensified greatly.
I finally decided that I would have to live my life according to rules dictated by the illness. I believed that my best chance for improvement lay in finding and honoring my limits. I hoped that by reducing stress on my body that it could find a way to improve.
I felt encouraged in this approach when I encountered the idea of the Energy Envelope in an article in the CFIDS Chronicle: "Think Inside the Envelope" (Fall, 1997).
The article suggested that CFIDS patients have limited energy, but that they can gain some control over symptoms by keeping the energy they expend within the limits of their available energy. The authors called this "living inside the energy envelope."
For some time, I used this idea in a general way and found it very helpful. I would ask myself whether doing something would take me "outside the envelope" or whether I was living "inside the envelope." Thinking of the envelope reminded me of my limits and of my ability to control my symptoms to some degree by honoring my limits.
After a while, however, I thought the concept would be even more helpful if I could understand my limits in more detail and if I could understand how other factors like stress affected me.
So I began to ask myself a series of questions: how much sleep do I need at night? how much daytime rest? how much time can I spend safely on the computer? how long can I stand at one time without intensifying my symptoms? how far can I walk?
Thinking of my Energy Envelope in terms of different aspects of my life led to a detailed understanding of my limits. I ended up with a list of about fifteen items. (See Finding Your Energy Envelope, Part II.)
In addition to those just mentioned, I included activity limits (how long I could do various activities like driving, standing, housework, reading, and spending time with people), stressors in my life, food sensitivities, sensitivity to light and noise, and emotions.
It took me at least a year to develop this more detailed understanding, but I felt rewarded all along the way because every insight I had helped me gain more control.
Trying Experiments as a "CFIDS Scientist"
I came to view living with CFIDS as a series of experiments that I called being my own "CFIDS scientist." Initially I didn't know my limits or understand what would help, so I decided to experiment. I assumed that some things might work but that others wouldn't. I tried to have a willingness to learn from my experience, especially when it contradicted my previous ideas.
Experimenting with Exercise
I learned a lot through my experiments, especially my attempts to exercise. Early on I was able to do only a fraction of what I could before becoming ill, walking fifteen minutes to half an hour most days. Through experimenting with walking at different times of day, I discovered that exercising in the afternoon was much less likely to lead to higher symptoms.
The realization led to a general realization that when I did something could be as important as how much. When I tried extending my walks, I observed that I sometimes felt fine during the walk but experienced strong symptoms afterwards or had to take a nap later in the day. That experience helped me to realize that the effects of activity might be delayed.
I was finally able to expand my exercise in a significant way when I incorporated scheduled rests into my walks. I would walk for 20 minutes, then sit down for a similar time, then walk some more. Planned rests also enabled me to begin walking again in areas with uphill stretches.
My progress was very slow. Often I extended the length of my walks by only one or two minutes every several weeks. Also, I backed off and I returned to my previous length if I experienced increased symptoms. But the discipline and patience paid off over time.
By extending my exercise very gradually as I could tolerate it, I have returned now to a level of exercise equivalent to what I had before becoming ill. On a July 2002 trip to Yosemite, I hiked almost 90 miles in six days, walking at a speed comparable to that on similar trips when I was 10 to 15 years younger.
Keeping records was crucial to being a CFIDS scientist. I began my experiments with confidence that having systematic notes about my life would enable me to see patterns and to identify links between my actions and my symptoms. I experimented with a variety of logs, most requiring only a few minutes a day to fill out.
Record keeping enabled me to recognize fluctuations in symptoms by showing me that my CFIDS was worse in the morning and better in the evening, and that the effects of exertion were cumulative during a week. Also, logging showed me the connection between standing and symptoms, documented how much exercise was safe, and showed me my vulnerability to stress.
Logging was also a good motivating tool. After noticing that some days were better than others, I focused on trying to find what I was doing that created good days so I could expand them. I also used my records to chart my progress over time. At the end of each month, I rated myself using the CFS & Fibromyalgia Rating Scale. Seeing written evidence of improvement gave me hope.
I assumed that I could explain any setback I experienced by studying my records, that all my relapses had causes I could identify. While this proved to be a high standard, it led to many helpful discoveries. By avoiding those things that created relapses, I was able to smooth out my life considerably, reducing both the frequency and severity of relapses, and eventually eliminating them.
I followed a three-step process to gain control over my relapses. At the end of 1998 I reviewed my logs for that year to identify all my relapses. (I defined a relapse as symptoms so severe that I had to spend at least one full day in bed.) I found eight. Then I looked for common causes and discovered that almost all the relapses were associated with either having another illness or travel.
Last, I formulated a strategy to minimize the impact of each of these factors. To combat relapses triggered by secondary illnesses, I decided to take extra rest even after the symptoms of the secondary illness had ended.
To minimize travel-related setbacks, I limited travel to a few hours' driving distance from home and included a ten-minute rest for each two hours driven. The total time to complete the three steps was about two hours. I haven't had a relapse since.
In the next article, I'll discuss the other strategies I found helpful.