Self Help for CFIDS and Fibromyalgia

By Lisa Lorden Myers

Editor’s Note: This article was originally posted at the CFS and fibromyalgia site of About.com, which Lisa managed. 

"You already have the precious mixture that will make you well. Use it." - Rumi

If you have Chronic Fatigue Syndrome (CFS) or Fibromyalgia (FM), you've probably tried more treatments than you can count.  As we desperately search for something that will help relieve our symptoms and enable us to return to our active lives, we often become increasingly frustrated.  Since there is no cure for either illness yet, the result of our various ventures into treatment alternatives is often a sense of discouragement--and frequently a lighter wallet.  So must we resign ourselves to a life of illness?

What if it were possible to make a difference in your symptoms by learning how to manage them?  Bruce Campbell, a CFIDS sufferer and creator of the CFIDS/Fibromyalgia Self-help Program, believes it is possible.  As a researcher who has worked on self-help programs for arthritis and other chronic illnesses, he knows that the self-help model has been shown to have dramatic effects on a person's coping skills, self-confidence, and even survival; he has created a course specifically tailored to the needs and concerns of people with CFS/FM.

To facilitate participation in the CFIDS/Fibromyalgia Self-help Program for those who couldn't attend an in-person group, Bruce Campbell, Ph.D., began to offer it over the Internet in 1998.  The online version has six lessons and involves groups of about 15 people using email.  Dr. Campbell developed the "The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia," which is used as a text for the course.  Through the text and group interaction, participants learn how to pace themselves, set realistic short-term goals, reduce stress, manage emotions, and minimize relapses.  The $25 fee for the class includes a copy of the text, and those who have participated in the program report that the benefits are well worth it.  Since it's inception, over 100 groups with a total registration of more than 1500 have completed the course, both online and in face-to-face groups meeting in several locations in the United States and places as far away as Australia.

I was one of the participants in an online version of the course.  Even though I consider myself very knowledgeable about techniques for coping with CFS/FM, I learned many things about myself and the way I cope with my illness.  I discovered the value of rest and pacing myself.  Before the course, I only thought I was resting; now I know that rest means lying down with my eyes closed (without television or the telephone).  I learned to ask for help.  A natural "helper" before I was ill, I was not used to the roles being reversed, and I still find it difficult.  I've gradually realized that asking for what I need is very important to my own well-being and can also be a gift to others.  Friends and family often feel so helpless in the face of a difficult and painful illness that they are relieved when I can ask for assistance with a specific task.  I also learned to recognize my emotions. The monotony of living with pain and loss day after day has a tendency to make us feel "numb" at times.  By acknowledging and experiencing my emotions, I can begin to uncover the factors that influence them, take action to change those that are under my control, and try to let go of those that aren't.

Most of all, I learned a great deal from the other students in the class.  Though connected only by email, the contact was not impersonal.  I often marveled at their courage, and their words touched my heart and made me smile, or even cry at times.  I believe that for me, the strategies for managing CFS/FM will always be a work in progress.  Participation in the CFS/FM Self-help course helped me begin to examine some of the concepts and strategies that I think are crucial to managing my illness and even recovering from it.

As Bruce Campbell points out, believing that our attitudes and coping skills are important to recovery is not the same as believing that CFS/FM is "all in your head."  Rather, learning and implementing self-help techniques can complement regular medical care.  He emphasizes that the course is not a cure for CFS/FM; it is simply designed to assist in developing an individualized plan for managing your illness.  That plan should help you feel better and improve your quality of life, and it may even be an aid to recovery.

The feedback from participants in the course has been very positive.  One student commented, "I can't stress enough what a positive experience this is; the course gave me direction, focus, and valuable new coping skills."  A participant in the online version wrote, "I really enjoyed being in our class and got a lot out of it.  It has profoundly changed the ways in which I see myself and my condition."  Perhaps the most moving comment came at an in-person group in San Francisco.  During the last session of the class, each of the participants spoke about the meaning of the class for him or her.  A woman named Sandy spoke of other support groups she had attended as occasions for self-pity, in which people often tried to outdo one another in describing how dire their situations were.  She described the CFS/FM Self-help course as positive and solution-oriented and said, "You know what you have between the covers of this book, Bruce?  Hope."

May you find hope and help in your journey toward recovery.