Self-Help for CFS and Fibromyalgia
By Lisa Lorden Myers
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 CFS sufferer and creator of the CFIDS & Fibromyalgia Self-Help Program, believes it is possible. [Note: The article was written before our name changed to the ME/CFS and Fibromyalgia Self-Help Program.]
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 and FM.
The program is based on four key principles:
1) Self-Help
Because of the uncertainty and limitations imposed by chronic illness, people with CFS and FM often suffer from frustration and a sense of helplessness. As the day-to-day managers of our CFS and FM, we can benefit by learning tools for coping. Through our efforts, we can change the impact of our illness and may even change the course of the disease.
2) Pacing
Because CFS and FM severely limits our energy, it is common to cycle between overactivity and enforced rest ("push and crash"). By identifying and respecting our limits and "living inside the envelope," we can reduce our symptoms, decrease the frequency and severity of relapses, bring greater predictability to our lives, and perhaps be able to gradually expand our limits.
3) Multiple Coping Strategies
CFS and FM symptoms seem to have many causes influenced by a host of factors. It can be helpful to use a variety of coping techniques, each tailored to a particular cause or factor. By exploring the causes of our symptoms, we can identify which ones may be under our control and learn techniques for reducing their effects.
4) Support
Our illness tends to isolate us. A supportive group that is focused on finding ways to live better can offer encouragement and inspiration. Scientific research has shown that connecting with others who share a similar condition in an environment of respect and understanding can enhance coping skills and self-confidence.
History, Course Details & Lisa's Experience
The program began in March 1998 with two face-to-face groups meeting near San Francisco, California. Seventeen people met once every two weeks, for a total of 13 sessions, with encouraging results.
Many students experienced noticeable improvement, based on surveys completed by each group member at the start of the course, at the end of the course, and six months following. Both groups reduced their disability level somewhat and increased their confidence in their ability to control their illness. Some students improved dramatically.
To facilitate participation in the 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 book Managing Chronic Fatigue and Fibromyalgia.
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. [2018 update: Course fee is now $20 and there have been over 600 groups.]
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 and 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 and FM will always be a work in progress. Participation in the CFS and 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 and 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 and 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 and 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.
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