Print

Email a Friend

When you develop a long-term condition like Chronic Fatigue Syndrome or fibromyalgia, you may feel like you have entered a new world in which all the rules of life have changed and there is no obvious way forward. This perplexing situation can make you feel helpless.

But there are many things you can do to regain control and improve your well being. This book will show you how. Using the ideas you'll find here, you can create a plan for managing CFS and/or fibromyalgia.
 

The first step, Part 1 in the book, is to understand your situation. We will begin by looking at three key aspects of CFS and fibromyalgia.
 

Perhaps when you first became ill with CFS or fibromyalgia, you thought you had a short-term illness, but one that kept hanging on. At some point, however, you realized that you had entered a new realm. You were confronted by the fact that your problem was something quite different from a short-term illness. Short-term or acute illnesses are temporary problems that usually end because of medical treatment or the passage of time.
 

CFS and FM do not create a temporary interruption of your life. Rather, they are a conditions that persist. Instead of resuming your previous life after a brief interruption, you were faced with having to adjust to long-term symptoms and limitations.

And, if you are like many people with CFS and fibromyalgia, your condition became a focus around which much of your life was oriented. You may also have found that the strategies you use for acute illness, such as pushing through in spite of symptoms, only makes things worse. This book will teach you skills for managing a different kind of illness.
 

Second, not only do CFS and fibromyalgia impose limits and bring symptoms that persist, they have comprehensive effects, touching many parts of life. They affect your ability to work, your relationships, your moods, your hopes and dreams for the future, and even your sense of who you are. Living with a long-term condition like CFS or fibromyalgia means much more than managing symptoms.
 

Complicating the challenge, there is an interaction between CFS or fibromyalgia and other parts of your life. (See diagram.) For example, CFS and FM reduce your activity level (arrow pointing out from CFS/FM to Activity), but if you try to do more than your body can tolerate, you will experience higher symptoms (arrow pointing in).
 

Interactions of illness and other factors

The same pattern of reciprocal effects is true for stress. Living with symptoms on a daily basis is inherently stressful. In addition, illness often creates financial pressures, complicates relationships and brings great uncertainty about the future. In all these ways, illness increases stress. But stress, in turn, can make symptoms worse. Even moderate amounts of stress can greatly intensify symptoms.
 

Another example is the interaction of illness and feelings. Emotions like worry, anger, depression and grief are normal and understandable reactions to the disruptions and uncertainty brought by serious illness. These reactions to being ill may be particularly intense in CFS and fibromyalgia, because the two conditions make emotions stronger than before and harder to control.
 

The strength of emotions can create a vicious cycle in which illness intensifies emotions and then emotions, in turn, intensify symptoms. For example, people who are depressed have a lower threshold for pain. Also, pain can be intensified by anger, because anger usually creates muscle tension. Intensified symptoms, in turn, may generate more worry and pessimism.
 

There are similar two-way interactions between illness and relationships, and illness and money. When someone is ill for an extended period, relationships often suffer because the person who is ill feels discomfort and has less energy, and because others have their lives disrupted, too.

But relationship problems, like not feeling understood or worry about being abandoned, create new stresses, that in turn make symptoms worse. Illness affects finances by reducing income. Financial worries then increase stress, which translates into higher symptoms.
 

To summarize, CFS and fibromyalgia have comprehensive effects, touching many parts of life. They are much more than simple medical problems. A plan for managing them has to address all its effects, not just symptoms.
 

Third (and perhaps most important), Chronic Fatigue Syndrome and fibromyalgia are affected by how you respond to them. One example is how you live with the limits imposed by illness. One common response is the push/crash syndrome, in which you swing between times of intense symptoms and periods of rest.

When symptoms are intense, you go to bed. When they subside, you resume your activity level, but then experience increased symptoms and retreat to bed again. As you'll see in Part 3, pacing offers an alternative. Using pacing, you can replace push and crash with a more stable and predictable life.
 

While there is so far no cure for either CFS or fibromyalgia, the way a person responds to either condition has a big effect on symptoms and quality of life, often a larger effect than medical treatments. As Dr. Charles Lapp says, "There are limits to what your doctor can do." The key to recovery with these conditions, he says, "is acceptance of the illness and adaptation to it by means of lifestyle changes, for which medical treatment is no substitute."
 

The self-management approach you'll find in this book provides tools for coping that can also promote improvement and even recovery in some cases. The upcoming chapters contain many ideas for things you can do to feel better. These strategies can help reduce pain and discomfort, bring greater stability, lessen suffering, and may produce improvement, as we have seen many times in our classes.