When you develop a long-term illness like CFIDS or fibromyalgia, you may feel like you have entered a confusing labyrinth in which all the rules of life have changed and there is no obvious way out. This confusing situation can make you feel helpless. But there are many things you can do to gain control and improve your well being. This book will show you how to take an active role in managing your illness.

Taking charge includes learning about your condition and making changes in your life to help you feel better. We’ll begin that process in this chapter by outlining a framework you can use to understand your situation. After describing how chronic illness differs from other forms of illness you may have known, we will outline basic facts about CFIDS and fibromyalgia. Finally, since each person’s illness is different, we’ll offer ideas to help you understand your unique situation.

Chronic Illness

Long-term illnesses like CFIDS and fibromyalgia are different from both short-term illness and terminal illness. Short-term or acute illnesses are temporary problems. They present you with brief interruptions of your life. Though sometimes frightening or painful, they are usually conditions in which diagnosis and treatment are clear, and the outcome predictable. After a few days or weeks of rest, treatment or both, your life resumes as it was before. Called “acute,” short-term illnesses are temporary interruptions of our lives and usually resolve by medical treatment or by the passage of time. Terminal illness, in contrast, is a life-threatening medical condition expected to end life.

Perhaps when you first became ill with CFIDS or fibromyalgia you thought you had just another short-term illness, but one that kept hanging on. But at some point, you realized that you had entered a new realm. You were confronted by the fact that your illness was not a temporary interruption of your life, but a central fact around which your life revolved. Instead of resuming your previous life after a brief interruption or struggling with a terminal illness, you were faced with having to adjust to long-term, perhaps lifelong, symptoms and limitations.

Chronic illness is different in a second way as well. Not only does it bring symptoms that persist but are not life threatening, it has comprehensive effects, changing how much you can do, your moods, your relationships, your finances, your hopes and dreams for the future, and your very sense of who you are. Complicating your challenge, there is an interaction between illness and other parts of your life. (See diagram.)

Interactions of illness and other factors

Two-Way Effects

Consider the two-way relationship between illness and activity (arrow pointing out). Illness reduces activity. In fact, one of the hallmarks of serious illness is that it imposes restrictions, forcing a person to live a different and more limited life than before. But the relationship also works in the other direction as well. If you feel frustrated at the restrictions imposed by your illness, you may respond by doing more than your body can tolerate, which results in higher symptoms (arrow pointing in). Doing too much repeatedly can result in even greater limits. The cycle of push and crash, and ways to get off it will be discussed in Chapter 5 and Chapter 6.

The same pattern of reciprocal effects is true for other elements as well. Take the relation of illness and stress. Illness is a tremendous source of 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. Further, CFIDS and fibromyalgia can make you more vulnerable to stress than before, because they seem to reset the body’s “stress thermostat” to be more sensitive. In all these ways, CFIDS and fibromyalgia increase the experience of stress.

But the relationship runs the other direction as well. The way you respond to stress can make symptoms worse or help reduce them. For example, if you respond to stress with worry, you can intensify symptoms. If, however, you learn to relax in response to stress, you can reduce symptoms. For a discussion of strategies for controlling stress, see Chapter 9 and Chapter 10.

The same two-way relationship applies to feelings as well. Emotions like worry, anger, depression and grief are normal reactions to having chronic illness, understandable responses to a situation in which life is disrupted and routine replaced with uncertainty. These emotional reactions to being seriously ill may be particularly intense for CFIDS and fibromyalgia, because these illnesses seem to make people labile, meaning that their emotions are stronger than before and harder to control. The strength of our emotions can create a vicious cycle. Emotions can intensify our 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 make us more worried and depressed, which further worsens our symptoms. For discussion of managing emotions, see Chapter 11 and Chapter 13.

To summarize, CFIDS and fibromyalgia have comprehensive effects, touching many parts of your life. They are much more than simple medical problems. Rather than lending themselves to being resolved, they are conditions that patients have to learn to manage. This implies a third difference between long-term and acute illness. The long-term nature and comprehensive effects of chronic illness imply you have a different role as a patient than you have with acute illnesses. Because chronic illness does not have a cure and medications often have limited effectiveness, a great deal of responsibility falls on your shoulders as a patient to be the day-to-day manager of your condition. You can think of your situation as having five challenges. (The book will describe all the challenges and how you can meet them.)

Living within Limits. Serious illness imposes limits, forcing you to lead a more restricted life. As noted above, many patients respond by engaging in repeated cycles of push and crash: fighting against their limits, then collapsing in order to recover. Instead of fighting against or trying to ignore limits, the two-part strategy of finding your “energy envelope” and then living within it by pacing yourself offers a way to gain some control.

Controlling Stress. Stress can be a challenge for anyone, but it can be doubly difficult for people with CFIDS and/or fibromyalgia. Being chronically ill adds new stressors to those you were already confronting. Complicating your challenge, CFIDS and fibromyalgia are very stress-sensitive illnesses. Using a combination of stress reduction and stress avoidance, you can reduce the effects of stress on your life.

Managing Emotions. Strong emotions like fear, anger, grief and depression are common reactions to having chronic illness. Such emotions are a normal and understandable response to being in a situation in which life is disrupted and routine is replaced with uncertainty. Self-help strategies can help.

Getting Support. Serious illnesses like CFIDS and fibromyalgia create great strains in families and test other relationships as well. Family members and friends may take on new, additional responsibilities while suffering losses as well. Patients may feel isolated both physically and psychologically. 

Moving Beyond Loss. The final challenge of chronic illness is coming to terms with grief, the emotional response to loss. Chronic illness brings with it many serious losses, so much so that it can be called the loss of the person we used to be. The pervasiveness of loss creates the last challenge: building a new life when so much has been taken away. 

Acceptance and a Fighting Spirit

The attitude that seems to help can be characterized as being at the same time both realistic and optimistic. I call it acceptance with a fighting spirit. Patients with this attitude combine two apparently contradictory ideas. On the one hand, they accept the fact that their illness is a long-term condition. Instead of living as if they were well or searching for a miracle cure to restore them to health, they acknowledge that their lives have changed, possibly forever. At the same time, these people also have a fierce determination to improve, and the conviction that they can find ways to get better through their own efforts.

Dean Anderson, a recovered CFIDS patient whom you will meet in Chapter 5, provides an example. After failing to improve by determination and hard work, he came to a certain kind of acceptance. He describes this acceptance as not resignation, but rather “an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life.” He goes on to say that “the ‘effort’ required to recover from CFIDS is an exercise in discipline and hopefulness, not determination and striving.” The discipline required is the discipline “to recognize and adhere to one’s known limitations and to follow a strict regimen without periodically lapsing.”

CFIDS (aka Chronic Fatigue Syndrome)

CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also called Chronic Fatigue Syndrome) is a long-term disorder in which debilitating fatigue is usually the most prominent symptom. Fatigue is experienced as a deep exhaustion that can be brought on by low levels of activity or for no apparent reason. Other common symptoms include poor sleep, body pain and mental confusion (“brain fog”). Sleep is often experienced as unrefreshing. Patients often feel as tired when they get up as before going to bed. Body pain is often described as the feeling of being run over by a truck. Emotional problems such as depression, anxiety, irritability and grief, are common.

The severity of CFIDS varies greatly. While many patients have moderate cases, some continue to lead relatively normal lives and others are housebound or even bedridden.

CFIDS is a common illness. Recent research suggests that there are probably 800,000 or more adults with CFIDS in the United States. In addition, children also may suffer from CFIDS. Research has also disproved the earlier idea of CFIDS as the “yuppie flu.” The illness affects all racial and economic groups, striking more vulnerable populations more heavily than upper middle class whites. About two-thirds of patients are women.

CFIDS often appears together with fibromyalgia. About two-thirds of people diagnosed with one illness also have the other. The two illnesses are alike in many ways. Their symptoms are very similar and both are hidden illnesses, meaning patients often appear normal to others. Although both are now widely acknowledged to be real, physical illnesses, neither has a known cause or cure.

Diagnosis

There is as yet no diagnostic test or proven physical marker for CFIDS. Rather, the illness is diagnosed through a thorough medical examination and laboratory tests. The exam and tests can be used to identify other illnesses that have fatigue as a central symptom. These may include thyroid problems, lupus, MS, hepatitis, sleep disorders and depression. According to the widely used definition published in the Annals of Internal Medicine in 1994, if no other illness can explain symptoms, an illness is considered to be CFIDS if two criteria are met. First, the person must have experienced a debilitating fatigue lasting at least several months and forcing a substantial reduction of activity. Second, she or he must have four or more of the following eight symptoms: 1) impaired memory or concentration (mental confusion), 2) sore throat, 3) tender lymph nodes in the neck or armpit, 4) muscle pain, 5) joint pain, 6) headaches of a new or different type, 7) sleep that does not refresh and 8) extreme fatigue following activity (post-exertional malaise). A more recent Canadian definition emphasizes, in addition to fatigue, post-exertional malaise, disturbed sleep, pain and cognitive problems.

Prognosis

There is so far no cure for CFIDS and its course varies greatly. Some patients, probably only a small percentage, recover. They are able to resume their pre-illness lives with only a minor residue from the illness, such as vulnerability to high levels of stress or less physical stamina. Another, larger group achieves notable improvement but less than full recovery. The amount of improvement in this second group varies widely. The total of these two groups might be something like half or perhaps somewhat more than half of all patients. Unfortunately, others remain quite ill, a few worsen over time, and others swing between periods of improvement and times of intense symptoms.

The course of CFIDS also varies. Some people with CFIDS make relatively steady progress, some swing between periods of remission and times of intense symptoms, while still others have a relatively stable level of symptoms, neither improving nor declining.

Treatment

Given the absence of a cure, treatment for CFIDS focuses on controlling symptoms and improving quality of life. Medical treatment is tailored to the individual patient and often focuses on addressing the most bothersome symptoms such as sleep disorders and pain. Since no medication is commonly helpful, there is often a period of experimentation to find what works for a given individual. Medications may have to be changed periodically, as they can lose effectiveness. Patients are usually started with very low dosages. Non-medical approaches are often used as well. They may include vitamins and supplements, acupuncture and other non-traditional remedies.

Many CFIDS authorities recommend the approach we will adopt in this book: making use of medical treatments where appropriate, but focusing on lifestyle adjustments such as pacing, controlling stress, managing emotions and getting good support.

Fibromyalgia

Fibromyalgia, also known as fibromyalgia syndrome (FMS), is a common condition in which pain is usually the major symptom. The pain is generally felt all over the body, though it can start in one region and spread or move from one area to another. The disease does not damage tissue and is not progressive. Probably the second-most common symptom is poor sleep. Patients may have trouble falling asleep or staying asleep. In most cases, sleep is not experienced as restorative or refreshing. Another frequent symptom, reported by about three-quarters of patients, is fatigue of the type felt by people with CFIDS. Other common symptoms include headaches, strong emotions and cognitive difficulties (“fibro fog”). The latter include confusion, difficulty concentrating and poor memory. People with fibromyalgia often have one or more other medical conditions, including CFIDS, irritable bowel syndrome, thyroid problems, arthritis and myofascial pain.

As with CFIDS, the severity of fibromyalgia varies. Many patients continue to work, though a significant minority are disabled. Like CFIDS, fibromyalgia is a common illness. Estimates vary, but there are probably at least four to five million people in the United States with fibromyalgia, possibly many more. Perhaps as many as 90% of them are women.

Diagnosis

Like CFIDS, fibromyalgia is diagnosed through identification of symptoms and exclusion of other possible causes. There is no diagnostic marker for the illness in a patient’s blood or evidence of the illness that appears through X-rays or other testing. The criteria for diagnosis include a history of at least several months of pain in many parts of the body (left and right sides, above and below the waist) and pain in at least 11 of 18 specific “tender points” on the body. Tender points are locations on the body that are painful when pressed. Such points in fibromyalgia are found in particular locations around the neck, shoulders, chest, elbows, lower back, hips and knees. Studies suggest that it takes an average of five years after the first appearance of symptoms to get a diagnosis.

Prognosis

Like CFIDS, fibromyalgia is neither progressive nor fatal. And, just as there is no cure for CFIDS, there is no treatment that cures fibromyalgia. But, as with CFIDS, some patients experience a spontaneous recovery and many experience notable improvement. In fact improvement is probably the most common outcome for fibromyalgia, experienced by half to two-thirds of patients.

As with CFIDS, the course of fibromyalgia may vary. The location and severity of pain can change over time. Symptoms can be intermittent, fluctuating or persistent. Triggers of symptom intensification may include stress, trauma, repetitive motion, poor sleep, strong emotions and weather changes.

Treatment

Like treatment of CFIDS, treatment of fibromyalgia focuses on controlling symptoms rather than cure. Approaches include medications, alternative treatments and self-help measures. Medications are often used for improving sleep and controlling pain, though their effectiveness varies greatly from patient to patient. Medication regimes are usually developed through experimentation with different medications and dosages. Overall, medications are only “modestly helpful” according to FMS physician Dr. Daniel Goldenberg.

Exercise is commonly recommended, both for reducing pain and stiffness and for reversing deconditioning. And the lifestyle adjustment strategies mentioned for use with CFIDS are also appropriate for fibromyalgia patients.

Your Unique Situation

Each person’s case of CFIDS or fibromyalgia is different, both medically and in other ways. The medical aspects of both illnesses are tremendously varied. Some people have relatively mild cases, while others may be bedridden. Most people are in between. Also, there are many different patterns of symptoms. Some people, for example, may have pain as their major complaint while for others the main problem is fatigue, brain fog or poor sleep.

Adding to the complexity, each person’s illness may vary over time. Some symptoms may disappear, only to be replaced by new ones. Finally, CFIDS and fibromyalgia may be complicated by the presence of one or more other chronic illnesses. (The most common pattern we see in our groups is people who have both CFIDS and fibromyalgia.) So part of understanding your unique situation is to identify the severity of your illness, your symptom pattern and the presence or absence of other illnesses.

Illness Severity

To get an idea of how your situation compares to others’, place yourself on the CFIDS/Fibromyalgia Rating Scale. If there is a discrepancy between your score based on activity level and that based on symptoms, rate yourself using the severity of your symptoms. Most students in our course have rated themselves between 25 and 45 at the start of the course, but we have had people across almost the full range of the scale.

Life Circumstances

Just as people with CFIDS and fibromyalgia differ in their symptoms and in the severity of their illness, so do they come from many different life situations. To understand your situation requires that you assess how your unique life circumstances affect your illness, especially in the areas of money and relationships.

Some patients find their financial situations have changed little. Perhaps they have a mild case of CFIDS or fibromyalgia and can continue to work. Or maybe they have family members who work or they receive disability payments that replace their former income. For others, however, financial pressures can be great, even overwhelming. Some people live alone with little or no income and no financial cushion. Many are somewhere in between, perhaps stressed to some degree but able to maintain a lifestyle more or less similar to the one they had before becoming ill.

Chronic illness changes relationships, creating new obligations and also new strains and frustrations. Your family may or may not understand you. All family members are challenged to live differently; some may have to assume additional responsibilities. Relationships can be great sources of support and help, sources of stress or both. For ideas on improving relationships, see Chapter 12.

Coping Skills and Attitude

So, your unique situation includes both your illness and your life circumstances. In addition, there are two other factors that come into play: your coping skills and your attitude. The hopeful thing about both is that, unlike some other elements, they are not fixed. You may not be able to change the fact that you have CFIDS or fibromyalgia, but you can learn new ways to deal with it. Even if life has given you a hard situation, you choose how to respond.

Several educational programs for people with chronic illness illustrate the importance of skills and attitude. One such program is the Arthritis Self-Help course, which was developed at Stanford University in the late 1970’s and has been taken by over 300,000 people. This six-session class on coping with problems such as pain, loss of function and depression is taught by volunteers, many of whom are arthritis patients. Patients taking the class have significantly reduced their pain and depression, and increased their activity level.

Research has shown that the patients who improve the most through the class are those who believe in their ability to exercise some control over their illness. These people do not deny they are sick or hold unrealistic hopes for recovery, but they have confidence that they can find things to make their lives better. The course shows that it is possible for patients to learn new attitudes and skills, and that a brief, volunteer-led class can produce significant change. (We modeled our volunteer-run program in part on this course.)

Similar programs at UCLA and Harvard for skin cancer and chronic pain have produced comparable results. Patients 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 patients who took a course on combating chronic pain reduced their visits to doctors, their levels of anxiety and depression, and their level of pain.

All these programs are based on the principle that how we live with chronic illness can change its effects on us and may even change the course of the disease. The three courses showed that using good coping skills could make a significant difference to quality of life.

Twelve Step groups and similar programs offer further evidence of the power of self-help. 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 provide tools and structure. By tools I mean a set of ideas that can help you improve your life. Structure means that the group provides support, encouragement and nurture.

I believe the principles of this approach can be helpful to learning how to live well with chronic illness. As with other life problems, learning to manage chronic illness involves making adjustments to daily habits and routines. This is a gradual process, often involving setbacks. While it is possible to do it on your own, many people find that mutual support is a necessary ingredient for success.

In Summary

Self-management is not a cure for CFIDS or fibromyalgia, but it provides tools for coping that can also promote improvement and even recovery in some cases. When offered through a group, self-help also includes support, inspiration and encouragement from fellow patients. Self-help is no magic bullet; it requires hard work and patience. But many patients find that they can affect their symptom level and quality of life significantly by accepting responsibility for those things under their control.

References

Anderson, Dean. “Recover from CFIDS,” CFIDS Chronicle: Winter 1996, 27-29. (Also posted in the Success Stories section of our website.)  

Bell, David. The Doctor’s Guide to Chronic Fatigue Syndrome. Reading, Mass.: Addison-Wesley, 1995.

Berne, Katrina. Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses. Alameda, Cal.: Hunter House, 2002.

Caudill, Margaret. Manage Pain Before It Manages You. New York: Guilford Press, 1995. (Describes Harvard pain management program.)

Fransen, Jenny and I. Jon Russell. The Fibromyalgia Help Book: A Practical Guide to Living Better with Fibromyalgia. St. Paul, Minn.: Smith House Press, 1996.

Goldenberg, Don. Fibromyalgia. New York: Penguin Putnam, Guilford Press, 2002. 

Goleman, Daniel and Joel Gurin, eds. Mind / Body Medicine. Yonkers, NY: Consumers Union, 1993. (See Chapter 10 for description of Arthritis Self-Help course.)

Spiegel, David. Living Beyond Limits. New York: Times Books, 1993. (Describes UCLA skin cancer groups as well as Spiegel’s own breast cancer support groups.)

Wallace, Daniel and Janice Wallace. All About Fibromyalgia. New York: Oxford University Press, 2002.

Williamson, Miryam. Fibromyalgia: A Comprehensive Approach: What You Can Do About Chronic Pain and Fatigue. New York: Walker & Co., 1996.