1. Understanding Your Situation - Managing Chronic Fatigue Syndrome and Fibromyalgia, 2015 Edition

 

 
The same pattern of reciprocal effects is true for other factors. Emotions like worry, anger, depression and grief are normal and understandable reactions to the disruptions and uncertainty brought by serious illness. But, in turn, these emotions can affect symptoms as well. People who are depressed have a lower threshold for pain. Also, pain can be intensified by frustration, because frustration often leads to muscle tension.

To summarize the second point, CFS and fibromyalgia are much more than simple medical problems. A plan for managing them has to address their effects on many parts of life, not just their symptoms. 

Third, Chronic Fatigue Syndrome and fibromyalgia are affected by how you respond to them. One way of living live with the limits imposed by CFS and fibro is the push/crash cycle, in which you swing between times of intense symptoms and periods of rest. When symptoms are intense, you rest. When symptoms subside, you rush to catch up, but then experience increased symptoms and retreat to bed again. 

Fortunately, there is an alternative to the push/crash cycle: pacing. Pacing involves understanding your limits (your Energy Envelope) and adapting to them. It offers the possibility of a more stable and predictable life. With pacing, you can live your life according to your plan, rather than in response to symptoms, giving you a sense of managing the illness, rather than the illness controlling you.

Not only does the way you lead your life have a big effect on your symptoms and quality of life, it often has a larger effect than medical treatments. As Dr. Lapp says, “There are limits to what your doctor can do.” The key to improvement 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-help approach you'll find in this book provides management tools that promote improvement for many people. The upcoming chapters contain many ideas for things you can do to feel better by changing how you live your life. Quoting again from Dr. Lapp, “There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of CFS or FM."

Each person with CFS or FM is different, so your self-management plan should fit your unique situation. So let’s move on to some exercises to help you understand your individual circumstances.

The severity of CFS and FM varies greatly. Among people starting our program, activity level has commonly been reduced by 60% to 85%, so they are functioning at 15% to 40% of normal, but the range is wide.

Some people are able to continue working, while others have their lives disrupted moderately and still others are housebound or even bedbound. Patterns of symptoms vary, too. Some people may have pain as their major complaint. For others the main problem is fatigue, brain fog or poor sleep.

You can get an overall idea of your CFS or FM by placing yourself on the Rating Scale. Place yourself on the scale by answering the question “What is the highest level of functioning I can sustain without intensifying my symptoms?” If there is a discrepancy between your score based on activity level and your score based on symptoms, rate yourself using the severity of your symptoms.

If you rate yourself at 30, you can be active about two hours a day without intensifying your symptoms. If your rating is lower, the activity level your body can tolerate currently is likely to be lower. If your rating is higher, you can be more active. In any case, your rating is just your starting point. The book will describe many strategies for how to improve.

Do You Have Other Medical Problems?

Living with CFS or fibromyalgia is often complicated by the presence of one or more additional medical issues. Many people have both CFS and FM. Also, CFS and fibromyalgia are often accompanied by one or more related conditions. Some of the more common ones are listed alphabetically below. Most of these conditions are treatable. If one or more applies to you, you can reduce your overall symptom load by addressing them.

 

Both the severity of your CFS/FM and the presence of additional medical conditions help shape your chances for improvement, as do several aspects of your overall life situation.

One factor in the latter category is the amount of support you have in your life. Some people with CFS and FM feel understood and supported by their family and/or other people in their lives, while others are challenged to have family understand them or may be alienated from their family. Also, people with the two conditions are often forced to give up working and have trouble sustaining friendships, further reducing support.

A second important area is your financial situation. Some people with CFS or fibromyalgia find their financial situations have changed little since they became ill. Perhaps they have a spouse’s income to fall back on, retire with a pension or have a mild case of CFS or fibromyalgia and can continue to work.

Others, however, are less fortunate. They may live alone with little or no income and no financial cushion. Having adequate money reduces stress as well as providing access to medical help, medications, adequate food and housing.

A third aspect of life situation is stability. Some people with CFS and FM are able to stay in the home they had when they got ill and their family situations are stable. Others have to deal with several to many changes: one or more moves and/or the loss of important people in their lives. Stability makes improvement easier.

Finally, your situation includes two other factors that affect your chances for improvement: your coping skills and your attitude. The key fact is that both of them can be changed. This book will show you how.

Research going back to the 1970’s has shown that people with chronic conditions can learn effective coping skills through brief self-management classes such as ours. One such program is the Arthritis Self-Help course, which has been taken by hundreds of thousands of people. (I worked in the program at Stanford that developed this class.) Participants in the class have significantly reduced their pain and depression, and increased their activity level.

Similar programs at UCLA and Harvard for skin cancer and chronic pain have produced positive results. People who took a six-session course on coping with skin cancer showed an increase in life expectancy in comparison to other skin cancer patients. And people who took a course on combating chronic pain reduced their visits to doctors, their levels of anxiety and depression, and their experience of pain.

People with heart disease reversed their symptoms using lifestyle changes such as a low-fat diet, exercise and group support. And people with diabetes have been able to reduce by half their risk of heart attacks and strokes by improving their regimen of blood testing and insulin injections.

Programs of this sort demonstrate that good coping skills can make a significant difference to quality of life and may even change the course of long-term conditions.

In addition to university-developed self-management programs, there is a second form of self-help, the Twelve Step and related programs. These programs offer further evidence of the power of people to help themselves.

Groups in this tradition are based on the idea that people who share a common condition can band together to help one another. Typically, groups of this type offer resources to help people regain control of their lives through support, encouragement and the inspiration of others.

The principles of the self-help approach apply to people with CFS and fibromyalgia. As with other life problems, learning to manage chronic illness involves adapting to new circumstances by making adjustments to daily habits and routines. Mutual support can be very useful in this process.

Attitude is also important to living well with long-term illness. The attitude that seems to help is one that is both realistic and hopeful. We call it acceptance with a fighting spirit. People with this attitude combine two seemingly contradictory ideas. On the one hand, they accept that their lives have changed and that they have to live differently than before. At the same time, they have confidence that they can find things to make their lives better.

The Five Challenges of CFS & Fibro 

 

As suggested above, long-term illnesses like Chronic Fatigue Syndrome and fibromyalgia confront you with different challenges than short-term illness. The chapters that follow are organized around five of these challenges.

 

With long-term illnesses like CFS and fibromyalgia, you have a different role than with acute illnesses. With short-term illnesses, you often can rely on a doctor to provide a solution or the illness resolves itself. But CFS and fibromyalgia are not self-limiting and don't yet have a medical cure.

Ongoing conditions that can't be cured need to be managed. You are the day-to-day manager of your condition and can perform that role more successfully by developing a set of self-management skills. You will find ideas about how to develop and refine five skills of self-management in Part 2.

 

The key fact about CFS and FM is that the way you live your life has a big effect on your symptoms. Many people feel caught in repeated cycles of push and crash, alternating between overdoing and forced rest. The price of overdoing is an intensification of symptoms called Post-Exertional Malaise, which is always out of proportion to the overactivity.

Pacing, in contrast, involves finding the body’s new limits and learning to live within them rather than trying to fight or ignore them. Pacing offers the possibility of a more stable and predictable life, one with a lower level of symptoms. With pacing, you can live your life according to a plan rather than in response to symptoms, giving you a sense of managing your illness rather than the illness controlling you.

Part 3 of the book explains how to define your limits (the Energy Envelope) and describes many practical strategies for living within it. Using pacing, you develop a new relationship to your body, understanding its needs and responding to them. We believe that pacing is the most powerful tool for promoting improvement.

 

Stress is doubly difficult for people with CFS or fibromyalgia. First, being chronically ill adds new stresses to the challenges of everyday life. Second, CFS and fibromyalgia are very stress-sensitive conditions. The effects of a given level of stress are greater than they would be for a healthy person. Controlling stress can have a big effect on both symptoms and quality of life. We will explore ways to reduce and prevent stress in Chapter 19.

Emotions like worry, anger, grief and depression are common reactions to chronic illness, normal and understandable responses to being in a situation in which life is disrupted and routine is replaced with uncertainty. Complicating the situation, CFS and fibromyalgia seem to make emotional reactions even stronger than before and harder to control. We will see how to use self-help strategies and medications to manage the feelings triggered by CFS and fibro in Chapter 20.

 

Serious illnesses like CFS and fibromyalgia create great strains in families and test other relationships as well. The unpredictability of symptoms and of emotions makes daily life difficult for everyone. Family members and friends may take on new, additional responsibilities while suffering losses themselves.

At the same time, patients often feel isolated both physically and psychologically. Part 5 discusses strategies to help you respond to the frustrations in relationships created by long-term illness and also offers ideas about how family and friends can help.

 

Chronic illness brings many serious losses, including the loss of familiar roles, loss of income and loss of control over our bodies. The pervasiveness of loss presents us with one of our biggest challenges: bringing new meaning to life when much has been taken away. Even if you are not able to restore your old life, you are challenged to find new meaning as you create a different kind of life than you had before becoming ill. For ideas on coming to terms with loss and building a new life, see Part 6.

 
In Summary

 

Both Chronic Fatigue Syndrome and fibromyalgia have comprehensive effects, touching many parts of people's lives. They are much more than simple medical problems. Rather than lending themselves to being resolved, they are conditions that most with them have to learn to manage.

Self-management provides tools for coping that can also promote improvement for many. When offered through a group, self-help also includes strategies, support, inspiration and encouragement from others.

This book is based on a belief in the power of self-help, the conviction that people can change the effects and even the course of CFS and fibromyalgia through their efforts. The chapters that follow 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 among the thousands of people who have taken our classes.