Recovery
from Chronic Fatigue Syndrome
Self-Help as a
Treatment for CFS
By Bruce Campbell
(Note: This
article is adapted from the online booklet “Recovery
from Chronic Fatigue Syndrome: One Person’s Story”. Bruce
Campbell is the creator of the CFIDS and Fibromyalgia Self-Help
program.)
When I was diagnosed
with CFS in 1997, I functioned at about 25% of my pre-illness level.
Over a period of several years, I gradually returned to a normal life
and consider myself to be recovered. I have an activity level comparable
to that of other people of my age and no longer experience CFS symptoms,
except very mildly on occasion. My improvement was gradual but steady,
about one or two percent a month until I got back to 90%, with further
improvement since.
The path I followed
was an unconventional one. After reading about my illness, I concluded
that medical resources for CFS patients were very limited. It was clear
that there was no medical cure for the illness, and the likelihood that
effective treatments would be developed in the near future seemed dim,
because very little money was being put into research. It was also
discouraging to read that there was no standard treatment, that is, no
commonly prescribed medication given routinely to CFS patients. What one
person found helpful might be ineffective with another. It seemed that
the best course the medical world had to offer was a series of
experiments with different medications in the hope of finding one or
more that would reduce symptoms only modestly.
Since I wanted to
get my old life back, I decided to forego that approach. Rather than
experimenting with many treatments in the hope of achieving minor
symptom improvement, I decided my best chance for getting better was to
observe myself and make changes in the way I lived. In contrast to an
approach with a very uncertain outcome, I felt confident I could find
things that would help me improve.
Acceptance and
Hope
My approach combined
two factors that might seem incompatible at first glance: acceptance and
hope. By acceptance, I mean that I acknowledged that my life had changed
for an extended period of time and perhaps permanently. Rather than a
temporary interruption, CFS had become the central fact around which my
life revolved. Its effects were comprehensive, limiting my energy level
and my ability to work, changing my emotions and relationships, and
creating great uncertainty. I accepted that my focus would have to be on
adapting to those limits.
Acceptance, however,
did not mean resignation. Instead, it meant for me a recognition that
CFS forced me to lead a different and more limited life, perhaps for the
rest of my life. I believed that listening to my body and responding to
its needs gave me the best chance for improvement, but I also recognized
the limits of my power. I thought I could exercise some control over my
symptoms, but believed that the extent of improvement was out of my
hands.
At the same time I
had hope. I was confident that through changing my daily habits and
routines I could find things to help me feel better. I did not know
whether it was possible to recover, but I believed that I could reduce
my discomfort, reduce uncertainty and regain some control over my life.
I did not expect a quick solution. Rather I recognized that
self-management was a way of life. I believed that listening to my body
and responding to its needs gave me the best chance for improvement.
Experimentation
My path was one of
trail and error. At the beginning, I didn’t know my limits or what
would help. Everything I did felt like an experiment. Some things I
tried helped me, but others didn’t. But I believed that whatever the
outcome, I could learn from my experience. Often I learned more from the
experiments that turned out differently than I hoped. I assumed that
this approach would require discipline and patience, and that I would
often fail. But I felt confident that I could improve my skills over
time and that, in any case, there was no better alternative than
experimentation.
Keeping records,
which took only a few minutes a day, helped me to recognize connections
between my actions and my symptoms, thus making my experiments more
efficient. Once I understood my limits, my records helped me live more
consistently within them by documenting the price I paid when I lived
outside my "energy envelope."
Multiple
Strategies
I also recognized
that my approach had to address the complexity of my illness. Not only
did I have several symptoms, those symptoms each had multiple causes.
Also, my illness affected, and was affected by, many other parts of my
life. For example, my illness created more stress, and stressful
situations worsened my symptoms. Becoming aware of these interactions
showed me that I would have to think comprehensively about my life and
use many strategies.
Perhaps the key
strategy was pacing, as I’ll describe in detail in the next article.
After living for several months on a roller coaster of intense symptoms
followed by period of rest, I came to believe that defining my limits in
detail and living consistently with them offered the best chance of
controlling my symptoms and improving my quality of life. This meant
finding a sustainable level of activity and making appropriate use of
rest on a daily basis.
Controlling stress
was also crucial. Because my illness both increased the stress in my
life and magnified the effects of stress, I made managing stress a major
focus. I used relaxation and other techniques to reduce stress and also
learned how to control stress by avoiding stressful situations.
Finally, two other
factors were important: emotions and relationships. Being ill triggered
powerful feelings: anxiety, frustration, depression and grief. Perhaps
the most powerful was grief, which meant coming to terms with loss and
finding a way to bring new meaning to my life when so much had been
taken away. Also, I found that support, especially the support offered
by fellow patients, was crucial to living well with illness.
Conclusion
In telling my story,
I am not promising recovery to others. Having known a thousand or more
CFS patients, only a few of whom recovered, I recognize how lucky I am.
Also, I do not advocate that other patients forego medical treatment of
CFS. Medications can be helpful for many patients with CFS and many
patients have additional problems best addressed through a medical
approach. I hope, however, that you find encouragement in my story,
which I believe suggests that there is much patients can do to help
themselves when faced with a major health challenge, things are are
safe, inexpensive and have a high likelihood of helping.
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