The Patient's Guide to Chronic Fatigue Syndrome & Fibromyalgia
This book offers a message of hope to people with Chronic Fatigue Syndrome and fibromyalgia. Even though there is so far no cure for either illness, there are many things patients can do to improve their quality of life. Through reading this book and using the strategies you find here, you can take an active role in improving your well-being.
The book contains ideas and practical techniques for regaining control of your life. These strategies can help you reduce pain and discomfort, bring greater stability and lessen psychological suffering. The approach you find here is based on the belief that you can change the effects of long-term illness, and even its course, through your efforts.
Like you, I am a patient. I came down with Chronic Fatigue Syndrome in 1997. I started the self-help program that uses this book as its text shortly after I was diagnosed, at a time when I functioned at about 25% of normal. I created the program for the same reason that you picked up this book: I wanted to feel better. I discovered the coping strategies you will find here one by one, learning from my experience and from the experience of fellow patients I met in our groups.
The idea for the program came from previous experience. Before becoming ill, I worked at the Stanford University Medical School as a consultant to medical self-help programs. I saw people gain some control over illnesses like arthritis and heart disease by using self-help strategies like those you will find in this book.
These programs taught self-help not as a cure, but rather as a way to live better with a long-term condition. I was inspired by the many people who improved their quality of life and especially by those patients who were able to change the course of their illness by taking responsibility for those things under their control. These self-help programs have been offered to more than 300,000 patients over almost three decades and their benefits documented in many scientific studies.
When I became ill, one of my first questions was: Where is the self-help program for Chronic Fatigue Syndrome? I thought that if a self-management approach could be useful for illnesses with well-established and reasonably effective medications, it should be all the more helpful for a condition with no standard or widely effective treatment.
CFS patients seemed much more thrown on their own resources than people with arthritis or heart disease and so, I reasoned, had even greater need for self-management skills. When I couldn't find a self-help class for CFS, I started one. As many fibromyalgia patients joined our groups and we adopted the name CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome), we became the CFIDS and Fibromyalgia Self-Help program.
Our program was based on a few simple ideas, principally having a positive focus and learning from one another. I assumed that by getting together with other patients to talk about what each of us had found helpful and by supporting one another, we could gain some control over our illness. As the program developed, we incorporated many of the proven strategies from the medical self-help programs I had worked on.
My health improved as the program developed. The pace was slow, but steady: 1% or 2% a month over a period of about four years. Eventually, I returned to my pre-illness level of health. (You can read the story of my recovery at www.recoveryfromcfs.org.) Ironically, much of the improvement occurred after I had concluded that recovery was out of my hands.
Based on my improvement, I came to believe that I could gain some control over my illness, but also concluded that there was no way to predict to what extent I might recover. Once I recognized that I couldn't control whether or not I recovered, I focused on making changes that would help me feel better, give me more control and improve my quality of life.
Serious illness brings pain, suffering and loss, but it also provides an opportunity to reevaluate your life and recast it in a new way. For this reason, it is possible to see your time with illness as a spiritual journey.
Many students in our program have said that even though they would not have chosen their illness, they have learned valuable lessons from it and even, in some cases, consider themselves to be better persons now than they were before becoming ill. Students have often told us that they believe it is possible to live a rewarding life with long-term illness, even though it is a different kind of life. I agree.
The program you will find in this book is based on several beliefs:
- Your plan for managing CFIDS or fibromyalgia needs to be individualized for your unique circumstances. Each person with CFIDS or fibromyalgia is different. Your case may be more or less severe than another person's. Also, your ability to manage your illness is affected by other factors, such as your finances and family situation.
- You can find things to help you feel better. These strategies are not aimed at curing your illness, but they can help reduce suffering and improve quality of life. Although some involve medication, many involve changing your daily habits and routines.
- Long-term illness affects many parts of your life, so managing it means much more than treating symptoms. You have also to deal with managing stress and emotions, getting support, and coming to terms with loss.
- Finding what works often requires experimentation. Some techniques work better at some times than at others or for some people better than for others. If one strategy doesn't work for you at some point, another may.
- Long-term illness requires that you rethink your life. You may not be able to restore your old life or live the life you had planned, but you can create a different kind of life than you had before becoming ill.
Our program does not offer a cure for Chronic Fatigue Syndrome or fibromyalgia, but I hope you'll find in this book ideas you can use to manage your illness better. And I hope that, even if you don't get your old life back, you find a way to create a new and satisfying life for yourself.
Bruce Campbell, Ph.D.
Executive Director, CFIDS and Fibromyalgia Self-Help Program
April 1, 2006
Palo Alto, California