Eight Steps to a  Better Life

Step 1: Educate Yourself

By Bruce Campbell

As a person with a long-term illness, you have to learn how to manage a condition that doesn’t go away. One of your tasks as a self-manager is to gather information, learning as much as you can about your condition and the treatment options available to you, so that you can make informed, intelligent decisions. This is the first step in your self-management program: to educate yourself.

If you’re fortunate, your doctor will be knowledgeable about your condition and you will learn a lot from discussions with her. In any case, I suggest that you avail yourself of help from a variety of sources. Since you’re already here, you might search our site, which contains more than 100 articles. In addition, I’ll describe five other sources of information about Chronic Fatigue Syndrome and fibromyalgia.

Before that, however, I would like to suggest some guidelines for your search. I’ve mentioned one already: using multiple sources. No one person or organization has a monopoly on helpful ideas about CFS and FM. You can counteract the partial perspective of any one source by considering the ideas of many. Second, ask whether the claims you hear are credible. Some people prey on the desperation of patients, so be skeptical of those who promise recovery, particularly if those promises come with a big price tag. Most reliable authorities believe that so far no cure has been developed for either condition. Be willing to experiment, but ask what risks are associated with a treatment and whether the likely gains are consistent with the cost. Third, view education as an ongoing task, but put limits on your inquiry. New developments occur from time to time, but breakthroughs are rare. After an initial intense period of educating yourself, you can probably keep up with new ideas by reading to one or two newsletters or magazines (see below for some suggestions).

Patient Organizations

Patient organizations such as the CFIDS Association of America for Chronic Fatigue Syndrome and the Arthritis Foundation for fibromyalgia are helpful resources. They offer information about CFS and fibromyalgia. In addition, they can hook you up with local support groups and may help you find a doctor.

The CFIDS Association is a national organization with a website (www.cfids.org) and a quarterly magazine for patients. Early in 2006, it published an extensive review of research on CFS that is a good starting point for understanding that illness. Also, the organization maintains a list of local support groups. The Arthritis Foundation is also a national organization and sponsors local chapters in many places in the United States. The national organization has an extensive website (www.arthritis.org), offers Arthritis Today magazine and publishes many books and pamphlets. Through the local chapters, it sponsors support groups, classes and water exercise programs in many communities. Its classes include the Arthritis Self-Help course, which has material on fibromyalgia.

Other fibromyalgia organizations include the Fibromyalgia Network (www.fmnetnews.com) and the National Fibromyalgia Association (www.fmaware.org). The former maintains an extensive website and publishes a quarterly printed newsletter. The latter publishes a magazine and an online newsletter, and offers other resources that include an extensive online listing of support groups.

The Internet

The Internet offers a wealth of information about CFS and fibromyalgia. In addition to the sites just mentioned, here are four other frequently-visited CFS and FM sites:

Centers for Disease Control (CDC) (www.cdc.gov/cfs/): US government site for Chronic Fatigue Syndrome, recently updated with new material.

Co-Cure (www.co-cure.org): An online information resource on CFS and fibromyalgia that includes a daily newsletter, a message board, a “good doctors” list and an extensive review of other online resources.

Immune Support (www.immunesupport.com): Patient education endeavor sponsored by a supplement company that donates to CFS and fibromyalgia research and advocacy. Extensive archive of articles, plus message boards, support group information and other resources.

Oregon Fibromyalgia Foundation. (www.myalgia.com): Website of well-known fibromyalgia researcher Robert Bennett and his colleagues.

Support Groups

The patients you meet in support groups can be a good source of information. They may point you to doctors who treat CFS and fibromyalgia. Also, fellow patients can offer models of successful coping with illness. People who are living well with your condition can both teach you practical strategies and offer inspiration. Today, such support is not limited to in-person meetings. Similar experiences are available on the Internet, through online chat rooms and message boards.

Support groups are a mixed bag and not all are helpful. Some are negative in tone or may be dominated by one or two people. Look for a group that gives you a sense of belonging, encourages balanced participation from many group members, offers you something positive to take home, and provides models of living successfully with illness. To find support groups, see the sources listed in the two previous sections.

Books

If you like to learn from reading, there are numerous books about Chronic Fatigue Syndrome and fibromyalgia. Here are a few to consider.

Arthritis Foundation. The Arthritis Foundation’s Guide to Good Living with Fibromyalgia. 2001. Outlines a self-management approach to fibromyalgia similar to ours.

Bell, David. The Doctor’s Guide to Chronic Fatigue Syndrome. 1995. Somewhat dated, but a good introduction from a pioneer CFS doctor.

Berne, Katrina. Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses. 2002. A comprehensive book on CFS and FM.

Matallana, Lynne. The Complete Idiot’s Guide to Fibromyalgia. 2005. A recent book by the president of the National Fibromyalgia Association.

Starlanyl, Devin and Mary Ellen Copeland. Fibromyalgia and Chronic Myofascial Pain: A Survival Manual. 2001. A popular book on fibromyalgia. Author has an extensive website: www.sover.net/~devstar/ .

You (Self-Observation)

You are a source of information about your illness, perhaps the most important one. You live with your condition on a day-to-day basis and know it intimately. You can increase your sense of control by deepening your understanding of how CFS or fibromyalgia affects you. You are probably aware of a number of things that intensify your symptoms. Factors often mentioned in our groups include doing too much, poor sleep, travel, financial problems, stressful relationships, worries about the future, food or chemical allergies, light or sound (sensory overload), too much time with other people, and family or other responsibilities.

You probably are also aware of things that help you feel better. When we ask people in our groups what helps them and gives them a sense of control, they often respond with answers like the following: accepting my limits, pacing myself, taking regular rests each day, getting support from other patients, using medications to control symptoms, changing my diet, asking others for help, avoiding people and situations that trigger symptoms, turning inward (spirituality), laughter and other pleasurable activities, and practicing relaxation and stress reduction.

Whether you keep records using health logs or have a less formal system of self-observation, you can use your insights about your life to increase your control. The key is to try experiments. For example, one person in our program cut her rest time in half without increasing her symptoms by taking several short rests each day rather than two long ones. Others have found they can accomplish more if they are sensitive to when they are active; they get twice as much done during their good hours each day. 

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