1: Roadmap for CFS and FibromyalgiaWhen someone you know first developed symptoms of Chronic Fatigue Syndrome (CFS) or fibromyalgia (FM), you and she may have thought the problem was a lingering short-term illness. But at some point you realized that you and your loved one had entered a new realm: the world of chronic illness. Instead of resuming familiar patterns and routines, you and she were faced with the prospect of adjusting to a different life. Your challenges may have included some, many or all of the following:
The course will discuss these challenges and how to respond to them. We begin with a roadmap of the world of CFS (also known as CFIDS, ME, and ME/CFS) and fibromyalgia, focused on five characteristics of the conditions. 1) CFS and FM Are Real and Common Chronic Fatigue Syndrome and fibromyalgia are now widely recognized as real illnesses, not psychological problems. Diagnostic criteria have been established for both and a diagnosis of either condition qualifies a person in the US to receive disability payments. Since there are no diagnostic tests or any proven physical marker for either condition, diagnosis is made through a combination of excluding other conditions and identifying a distinctive pattern of symptoms. A diagnosis of either Chronic Fatigue Syndrome or fibromyalgia does not rule out other illnesses. In fact, both CFS and FM are commonly found together with other medical conditions. (See the next section for more detail.) Both CFS and fibromyalgia are common. Research suggests that there are probably 800,000 or more adults with CFS in the United States; children and adolescents also experience CFS. About two thirds of people with CFS are women. Estimates of the prevalence of fibromyalgia vary, but there are probably at least five million people in the United State with FM. Studies suggest that more than 90% are women. 2) CFS and FM Are Serious and Long-Term Both conditions are characterized by the presence of several to many symptoms. Treatment usually focuses on four:
Fatigue Fatigue is experienced as deep exhaustion that can be caused by low levels of activity or for no apparent reason. Often, the effects of activity are disproportional to the energy expended and last far longer than it would in a healthy person. This is called Post-Exertional Malaise or PEM. Pain Pain is generally felt all over the body. It may be accompanied by tingling and burning or numbness in the hands, arms, feet, legs or face. may be experienced in the joints or, more commonly, as a non-specific pain felt over the whole body. Sleep People may have trouble falling asleep or may wake up frequently. In most cases, sleep is not experienced as restorative or refreshing. Cognitive Difficulties These include confusion, difficulty concentrating, fumbling for words and lapses in short-term memory. Other common symptoms in CFS include headaches, low-grade fevers, sore throat, tender lymph nodes, anxiety and depression, ringing in the ears, dizziness, abdominal pain (gas, bloating, periods of diarrhea and/or constipation), allergies and rashes, sensitivity to light and sound, abnormal temperature sensations such as chills or night sweats, weight changes and intolerance of alcohol. Emotional problems such as depression, anxiety, irritability and grief, are also common. Many other symptoms may accompany fibromyalgia, creating additional discomfort and frustration. Common additional symptoms include tension or migraine headaches, strong emotions such as depression and anxiety, jaw pain, ringing in the ears, dizziness, rashes, sensitivity to light, sounds, smells and temperature, and dry eyes or dry mouth. Managing symptoms is complicated by the fact that people with CFS and fibromyalgia often have one or more additional medical problems. A majority of people initially diagnosed with CFS or fibromyalgia are later diagnosed with the other as well. In addition, both conditions are often accompanied by additional medical issues, such as the following:
Although CFS and FM appear in a wide range of severities, the average person in our program rates herself at about 25% of normal. This means that she has had her activity level reduced by 75%. Treatment Because there is so far no cure for either CFS or fibromyalgia, treatment focuses on controlling symptoms and improving quality of life. 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. Since no medication is consistently effective, treatment usually consists of a process of trial and error to find what works for an individual patient. How a person with CFS and FM lives and the actions of those around them have a big effect. Because symptoms are intensified by factors such as too much activity, stress and poor sleep, they can be reduced by adjusting activity level, reducing stress and improving sleep. Helping your loved one adapt to the limits imposed by CFS and/or FM may be the biggest help you can offer. Prognosis The outcome for CFS and fibromyalgia varies from person to person, but for most people, the conditions are long-term. In the words of Dr. Lapp, the key to improvement with both is “acceptance of the illness and adaptation to it by means of lifestyle changes, for which medical treatment is no substitute.” There is so far no cure for CFS and its course varies greatly. It appears that significant improvement is possible, but some patients worsen over time and total recovery is rare. The prognosis is probably somewhat better in younger patients. The prognosis for people with fibromyalgia is somewhat better than for CFS. While FM is, for most people, a long-term condition, it is neither progressive nor fatal. A small number of patients experience a spontaneous recovery. Many FM patients experience notable improvement, but some people experience prolonged relapses. (For more on diagnosis, symptoms, treatment options, and prognosis, see the articles “About Chronic Fatigue Syndrome” and “About Fibromyalgia” in Basics section of the Library on our website. 3) CFS and FM Have Comprehensive Effects CFS and fibromyalgia touch every aspect of life: patients’ ability to work, relationships, emotions, dreams for the future and their sense of who they are. Chronic illness is a challenge to manage because its effects are so comprehensive. Living with CFS or fibromyalgia means much more than managing symptoms.  Interactions of illness and other factors Complicating the challenge, there is an interaction between illness and other parts of life. Illness restricts a patient’s life in many ways, but, in turn, is affected by other areas of life. (See diagram.) For example, illness puts limits on a person’s activity level (arrow pointing from CFS/FM to Activity). But, if patients do more than their bodies can tolerate, the overactivity causes a higher level of symptoms (arrow pointing in). The same pattern of reciprocal effects is true for other elements as well, for example the relation between illness and stress. Long-term illness often increases stress because of things like ongoing symptoms, financial pressure and uncertainty. At the same time, people with CFS and FM are very stress sensitive, so that stress creates a disproportionate intensification of symptoms. In summary, CFS and fibromyalgia have comprehensive effects, touching many parts of a patient’s life. They are much more than simple medical problems. A plan for managing them has to address all its effects, not just symptoms. 4) Each Person’s Situation is Unique The situations of people with CFS and fibromyalgia are vary widely in several different ways. In terms of severity, some people have relatively mild cases, while others may be bedridden. Most people are in between. Most people taking our self-help class rate themselves as functioning between about 15% of normal and 45%, but some with severe cases are bedbound, while others work part time and a few full time. Also, there are many different patterns of symptoms. For some people, fatigue may be the most bothersome symptom, while for others it is pain. Adding to the complexity, an individual’s illness may vary over time. Some symptoms may disappear, only to be replaced by new ones. Some people may have a relatively stable course, while others may fluctuate between times of severe symptoms and times of remission. The bottom line: each person's illness is different. The likelihood that a person will improve is also shaped by the person’s circumstances. This includes stage in life, finances, caregiving responsibilities, and sources of support. Two additional factors affecting the course of illness are coping skills and attitude, both of which can be changed. Research has shown that people can learn effective coping skills for managing long-term illness, either on their own or through self-help classes. 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. People with this attitude combine recognition that life has changed with a conviction that they can find ways to improve. 5) CFS and FM Are Affected by the Patient’s and Family’s Response How CFS and fibromyalgia patients conduct their lives has a major impact on their symptoms and quality of life, often a larger effect than medical treatments. As prominent CFS/FM physician 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." Living well with CFS or FM requires a level of management similar to that for other serious, long-term conditions, such as diabetes: major, long-term lifestyle changes to control the illness. Those around the patient play an important role, too. Your actions and attitudes will have an significant effect on your loved one’s symptoms. For example, by helping her adjust to her limits and by working to lessen family stress, you contribute to your loved one’s well being. You may not be able to change the fact that your loved one has CFS or fibromyalgia, but you and she can learn new and more effective ways to deal with the condition. Those who do best living with chronic conditions often 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. In summary, good coping skills --both hers and yours-- can make a significant difference to your loved one's condition and to your family's quality of life. Join The Next Introductory Class Register now for classes that begin on October 5, 2026. Registration closes on September 28, 2026. Cost: $20.00.
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