Living with FMS

By Bruce Campbell, CFIDS/Fibromyalgia Self-Help
Program: CFIDSselfhelp.org. Reprinted with permission.

What are the most important things to remember in
coping with Chronic Fatigue Syndrome or
Fibromyalgia? We asked that question of several
groups of people participating in our program.
Specifically, we asked them to imagine that a
newly-diagnosed CFIDS or fibromyalgia patient
approached them for advice, asking what three or
four things they had found most helpful in coping
with their illness.

Their responses clustered into six themes. About
two-thirds of people mentioned one or more aspects
of the following three ideas:

1) Accept Your Illness

Whether you have CFIDS or fibromyalgia, your illness
is real, physical, and long-term. Getting it was not
your fault. While your should accept that your
illness is long-term, you should also be hopeful
because there is much you can do to improve your
life. Rather than fighting your condition, be
compassionate toward yourself as someone with a
serious illness.

As one student said "the single thing that has
probably helped me most with living with my disease
is accepting that I have a chronic illness. Since I
started to plan my life around my illness, my life
seems to have improved. For a long time, I was in
denial of my disease and lived in hope for the day
it would just go away. My life seems better since I
accepted that I have to adapt to the illness."

Another student emphasized the challenge of
adjusting to loss. She said that a new patient is
likely to go through a grieving process before
reaching acceptance. "We grieve the losses this
disease has caused in our lives. Our lives are
drastically changed by our illness."

2) Live within the Limits of the Illness

Adjusting your activity level to the limits imposed
by the illness is one of the most helpful coping
strategies you can use. In our course, we call it
"living within the energy envelope." The idea is
that we have less energy than before. If we try to
do too much, we usually trigger an intensification
of symptoms that forces us to rest. In contrast to
living life on this roller coaster, we can gain some
stability if we learn to live within our limits. To
do this, you need to learn to listen to your body
and respect its needs. Having limited energy imposes
the need to simplify and to prioritize. By pacing
yourself (balancing activity with rest) you can gain
some control over your illness and bring stability
to your life.

One student summarized the idea of accepting limits
by saying she would advise "setting priorities,
really getting down to basics and saying no to
activities that do not fall within our personal
agendas. It is essential to preserve our energies
for activities that help us get better. This becomes
most difficult when we hate to disappoint special
people in our lives, but we must remember that if we
do one thing, we can't do another."

Another said that she believes the key to living
successfully with chronic illness is to adapt life
to the illness, and not just as a short term
strategy. Looking back, she believes she clung to
the idea of getting better too long. "I really
needed to be told, life will not be the same. I
needed to learn to manage my life from that point
on, very carefully, much as diabetics and others
with chronic conditions do."

3) Get Support

Chronic illness can be isolating and demoralizing.
Others may not always understand or sympathize.
Having people in your life who acknowledge your
suffering and offer support can be crucial. Seek out
support from fellow patients, who understand because
they share your situation. Stay connected to family
and friends to the extent possible, but be realistic
in your expectations. Some people may never
understand.

A third to half of those responding mentioned three
other themes:

4) Keep a Positive Focus

Though there is as yet no cure for either illness,
improvement is a real possibility. Through your
efforts, you can gain some control over your
illness. Regardless of your situation, it is
possible to lead a meaningful life, so value and
take care of yourself. In the words of one student:
You have a choice in every situation. You can be
defeated by it or learn and grow from it.

5) Educate Yourself

Many treatments are used for the two illnesses, with
new developments occurring all the time. No cure has
been found to date for either illness and no
treatment has proven widely helpful. Seek out
information and options about the illness.
Experiment to find what works in your individual
situation.

6) Rest Daily

Integrate regular periods of rest into your day,
regardless of how you feel. (In the course, we call
this "pre-emptive resting" or resting as a
preventive measure.) By taking scheduled rests-lying
down with your eyes closed in a quiet place-you may
be able to prevent flare-ups or reduce their
intensity. Such rests can help lower symptom levels
and increase a sense of control.

Other Themes

Other themes mentioned included getting exercise and
avoiding stress. A surprising result was that only
about one person in ten mentioned medical care as
being important to their coping.

Summary

In summary, members of our groups think that the
foundation for coping with CFIDS and fibromyalgia
lies in the combination of accepting the long-term
nature of the illnesses, adjusting one's life to
live within the limits imposed by illnesses, and
having supportive relationships. They also believe
that a hopeful attitude is both realistic and
effective, and that self-management includes
education about the illness and experimentation to
find what works in an individual situation.