"Recovery from Chronic Fatigue Syndrome: One Person's Story"
by Bruce Campbell, Ph.D.
Note from Bruce: This site, www.recoveryfromcfs.org, contains the story of my recovery from Chronic Fatigue Syndrome, which occurred over a period of about four years beginning in 1997. I began at about 25% of normal, but gradually returned to the same level of health I had before becoming sick and have remained healthy now (2006) for five years. I wrote this story in the hope that other people with CFS might find encouragement from my experience.
I knew from my work at Stanford that long-term illness increases stress. In addition to whatever stresses a person had before becoming ill, sickness adds new ones, including the discomfort of symptoms, isolation, financial pressure, strains on relationships and uncertainty about the future.
It took me a while to realize that in addition to these factors usually associated with long-term illness, there seemed to be something special about CFS that made me much more sensitive to stress than before. It was as if CFS had reset my “stress thermostat,” making me sensitive to more types of stress than before and increasing the effects of a given level of stress.
Any kind of conflict set off my symptoms and often things as simple as making decisions felt overwhelming. Even modest amounts of stress greatly intensified my symptoms, creating a feedback loop in which my symptoms and my response to them intensified one another. Once I realized how vulnerable to stress I had become, I decided that dealing with stress sensitivity had to be a big part of my effort to manage CFS. I would say that, along with pacing, controlling stress was one of the two most important things I did to cope with CFS.
My first effort at controlling stress was through stress reduction. I used two formal stress reduction practices, Jon Kabat-Zinn’s body scan and Herbert Benson’s relaxation response. (Kabat-Zinn's program is offered at many hospitals in the US and is explained in the book Full Catastrophe Living. Benson's method can be found in his book The Relaxation Response. You can find instructions for both techniques in Chapter 9 of the textbook for our self-help course. See the section titled “Relaxation Techniques.”)
The body scan is a relaxation procedure in which you focus your attention on one part of the body at a time. The relaxation response is a form of meditation that uses a focus on a word or image. I had started using the body scan several years earlier when I did Kabat-Zinn’s stress reduction program. I found it a helpful way to relax and it also helped me to fall asleep at night. Surprisingly, it became less effective as the years went on. Through that disappointment, I learned that sometimes a practice that is helpful for a while “wears out” and needs to be replaced.
I started experimenting with the relaxation response when I noticed that sometimes my daily rests were somewhat stressful because my mind was racing, full of anxious and worried thoughts. I decided to try meditation during my rests. I hoped that by quieting my mind, I could achieve a deeper quality of rest than by just lying down. The relaxation response involves repeating a word or sound over and over for fifteen or twenty minutes. When your mind wanders, you return to your chosen word or sound. I found I did better if I combined focusing on the air coming into and out of my nose, while counting from one to ten.
When I concentrated, I found myself in a state of deep relaxation, in which I was aware of what was going on around me but detached from it at the same time. Benson describes this as a pleasant state similar to the feeling you might have lying on the beach on a warm summer day or the sense of detached relaxation you feel just before falling asleep. Relaxing my mind while relaxing my body had a dramatic effect on my anxiety level, thus reducing my tendency to over-produce adrenaline.
The other traditional stress reduction technique I found helpful is one I mentioned earlier: making mental adjustments or changing my self-talk. Being aware of what I told myself, especially during relapses, helped me to reduce my stress. When I caught myself saying things like “you’ll never get better” or “you’ll be like this the rest of your life,” I countered by telling myself “you’ve bounced back from all your previous setbacks, so just relax” or “remember how things always look hopeless when you’re at your worst.”
I was aware of the power of thoughts to increase stress from my study of cognitive therapy, which focuses on the effects that our thoughts can have on our emotions. According to this view, negative thoughts can actually make us feel bad. If we say things like “I'll never get better” or “It's hopeless,” we are likely to feel anxious, sad and helpless. I observed this effect in me and also found that such thoughts created a vicious spiral.
The negative thoughts intensified my stress, which made my symptoms worse, which in turn triggered another round of negative thoughts. I was able to apply the principles of cognitive therapy to cut short this negative spiral.
It was also helpful to be aware of my expectations for myself. If I told myself something like “it’s Monday, you have to do the laundry,” I sometimes had to tell myself that my health came first and nothing bad would happen if I postponed my chores.
Stress avoidance proved to be just as helpful as stress reduction. I learned that I could prevent stress by avoiding those things that caused it. One cause of stress, I discovered, was novelty. It takes more energy to respond to a new situation than it does to something familiar. My response was to make my life as predictable as I could by using routine, that is living my life as much as I could according to a plan.
Having a daily schedule of activity, rest, exercise and socializing at set times gave structure to my life. With routine I had less pressure, and fewer surprises and emotional shocks. I had adopted routine as a pacing strategy, but found that it also helped me control stress.
I also learned to identify stress triggers, those situations and even people that set off symptoms. I found, for example, that I was vulnerable to sensory overload, particularly the noise and hustle and bustle associated with restaurants and other public places. My strategy was to avoid the noisiest places, for example by being selective about what restaurants I visited. And I sought out quiet areas in public places like airports.
My vulnerability to sense overload led me to limit my consumption of the media. I learned to look away from the TV if there were rapid scene changes that would otherwise be disorienting. Also, I limited my exposure to tragic events, such as 9/11. I followed the guidelines suggested for the general public to keep up but not to immerse myself for hours on end.
I also experienced a kind of sensory overload around certain people. Some were fidgety, others were animated or highly emotional. Whatever the trigger, I found them hard to be around. My strategies were to limit contact (generally to an hour or less) or, in a few cases, to avoid the person entirely.
In all these different ways, I took action to reduce the stress in my life. I believe that my successes built on themselves, creating a positive feedback loop. As I gained some control, I’m sure that I relaxed and that my growing confidence further reduced my stress. As I improved, my “stress thermostat” returned to normal.
(c) Bruce Campbell, Ph.D. All rights reserved.
Editor's note: To learn more about the CFIDS/Fibromyalgia Self-Help program, please visit http://www.cfidsselfhelp.org/