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Roadmap for Chronic Fatigue Syndrome & Fibromyalgia

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(First in the series For Family and Friends.)

When someone you know developed symptoms of Chronic Fatigue Syndrome (CFS) or fibromyalgia (FM), you may at first have thought the problem was a lingering short-term illness.

But at some point you realized that your loved one had entered a new realm: the world of chronic illness. Instead of resuming familiar patterns and routines, the person with CFS or FM was faced with the prospect of adjusting to a different life. 

[Note: Chronic Fatigue Syndrome is also known as myalgic encephalomyelitis (ME), ME/CFS and, formerly, Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).]

And her illness presented you with challenges as well. Here are some of the issues often faced by family members of people with Chronic Fatigue Syndrome or fibromyalgia. (Some also apply to friends.)

  • Extra household tasks
  • Financial strains
  • Caregiving responsibilities
  • Strained relationships
  • Worry and uncertainty about the future
  • Uncertainty about how to help the person who is ill
  • Resentment and frustration
  • Sadness and depression
  • Increased stress
  • Sexual difficulties
  • Loss of companionship
  • Strained communication
  • Less socializing
  • Extra parenting responsibilities

This article gives a roadmap for the world of long-term illness, offering first a description of CFS and FM, and, second, a framework for understanding your situation as a family member or friend of someone with Chronic Fatigue Syndrome or fibromyalgia.

Chronic Fatigue Syndrome and Fibromyalgia

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 to receive disability payments.

Both CFS and fibromyalgia are common. Research suggests that there are probably more than one million people with CFS in the United States, and comparable or greater numbers in other countries. About three-quarters are women. Estimates of the prevalence of fibromyalgia vary, but there are probably at least four to five million people in the United States with FM, possibly many more. Studies suggest that more than 90% are women.

The average person with CFS or fibromyalgia has moderate to severe symptoms and experiences a reduction in activity level of between 50% and 85%. Both conditions are characterized by the presence of several to many symptoms.

The central symptom of CFS is a fatigue that is experienced as deep exhaustion that is often intensified by activity. Other prominent symptoms include pain, sleep that is not refreshing and cognitive problems that include confusion, difficulty concentrating, fumbling for words and lapses in short-term memory.

Other symptoms that often appear with 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.

The most prominent symptom of fibromyalgia is widespread pain. Other common symptoms include poor sleep, fatigue and cognitive difficulties. Many other symptoms may accompany fibromyalgia, including 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.

A majority of people diagnosed with either CFS or fibromyalgia are later found to have the other condition as well. In addition, people with either or both conditions often have additional medical problems, such as irritable bowel syndrome (IBS), food and chemical sensitivities, sleep disorders (for example, apnea and restless legs syndrome), myofascial pain and thyroid conditions.

Treatments and Prognosis:
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. Patients can usually improve, or at least control symptoms, by adjusting their activity level, reducing stress and improving sleep.

For most people, CFS and fibromyalgia are long-term conditions. As mentioned earlier, no cure has been developed so far for either condition. A few people recover, many patients improve over time, while others remain stable and a few decline.

Chronic illness is a challenge to manage because its effects are so comprehensive. CFS and fibromyalgia touch every aspect of life: a patient's ability to work, relationships, emotions, dreams for the future and their sense of who they are.

Complicating the challenge, there is an interaction between illness and other parts of life. CFS and FM restrict a person's life, but, in turn, can be worsened by how a patient lives. (See diagram.) For example, illness puts limits on a person's activity level. But, if a person with CFS or FM does more than their body can tolerate, the overactivity causes a higher level of symptoms.

Interactions of Illness and Other Factors

Interactions of Illness and Other Factors

The same pattern of reciprocal effects is true for other elements as well, such as the relation between illness and stress. Living with symptoms on a daily basis is inherently stressful. In addition, illness often creates new stress because of factors such as financial pressure, strained relationships and uncertainty about the future. In all these ways, illness increases stress.

But, reciprocally, stress often worsens symptoms. People with CFS and FM are very stress sensitive, so that even moderate amounts of stress can greatly intensify symptoms, creating a feedback loop in which symptoms and a patient's reaction to them intensify one another.

Similarly, there is a two-way relationship between illness and feelings. Emotions like worry, anger, depression and grief are normal reactions to chronic illness, understandable responses to a situation in which life is disrupted and routine replaced with uncertainty.

Patients may experience a vicious cycle, in which illness intensifies emotions and then emotions, in turn, intensify symptoms. For example, people who become depressed because of their illness have a lower threshold for pain. Also, pain can be intensified by anger, because anger usually creates muscle tension.

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.

Individual Differences:
Just as CFS and fibromyalgia are comprehensive in their effects, so too are they tremendously varied. 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% and 35% of normal, but some are housebound or bedbound, while others work part time or even 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, so a plan to manage CFS or fibromyalgia must be tailored to each person's unique circumstances.

Your Situation

Serious illness has profound effects on family and friends, not just the person who is ill. And, just as each person with CFS and FM is different and needs to develop an individualized self-management plan, so, too, do you need to tailor your response to your unique circumstances.

Factors Shaping Your Situation

Probably the most important factor shaping your situation is the severity of your loved one's medical problems. The amount of disruption to your life and the amount of adaptation required of you will be dictated by the number and seriousness of the health issues faced by your loved one and by your relationship to her.

For those families in which the patient's life is touched only lightly by CFS or fibromyalgia and often for friends, the adjustments may be relatively minor. But when the illness is severe, the stresses can be great and the caregiving responsibilities substantial.

A second important factor is your circumstances (age and health) and the life stage of your family. If you are young and vigorous, your ability to take care of the person with CFS or fibromyalgia is different than if you are older and perhaps dealing with your own health problems. Likewise, the life stage of your family situation is important. If you have school age children, they are a major responsibility. If your children are grown, they may be sources of help.

A third significant aspect of your situation is your finances. The financial circumstances of families living with CFS and FM varies enormously. Some families experience little change in their financial condition, either because the patient is a child, the patient wasn't working when he or she became ill or continues to work, or the patient receives disability payments.

For others, however, financial pressure can be a source of great stress, as family income is reduced by half or more. Adjustments families make include the well spouse changing jobs, the family reducing spending or even moving to a less expensive home.

A family's ability to cope depends on other resources besides money. Support from extended family and from community resources such as friends and religious groups can spread the burden of coping with long-term illness. On the other hand, those families that are isolated from outside sources of support have to be more self-reliant.

Coping Skills & Attitude

Finally, your family's ability to deal successfully with CFS or fibromyalgia will be shaped by your coping skills and attitude. The way CFS and fibromyalgia patients and those around them conduct their lives has a major impact on the patient's symptoms and on everyone's quality of life. Your actions and those of the patient can change effects of CFS or FM and may even change the course of the illness.

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. Your actions and attitudes will have an important effect on your loved one's symptoms. By helping him or her adjust to their limits and by working to create a stable and predictable environment with lowered stress, you contribute to his or her well being.

You may not be able to change the fact that someone in your life has Chronic Fatigue Syndrome or fibromyalgia, but together you can learn new and more effective ways to deal with the condition. Research stretching back 30 years has proven that the people who do best living with chronic conditions are those who believe in their ability to exercise some control over the illness.

These people do not deny that someone is ill, nor do they hold unrealistic hopes for recovery, but they have confidence that they can find things to make their lives better.

Finally, there is one more factor that is important to living well with long-term illness: attitude. The approach to living with chronic illness that we have found helps people cope can be characterized as being at the same time both realistic and optimistic. We call it acceptance with a fighting spirit.

People with this attitude combine two apparently contradictory ideas. On the one hand, they accept that the illness in their life is a long-term condition. Instead of living as if the patient were well or searching for a miracle cure to restore good health, people with this approach acknowledge that the patient's life has changed, possibly forever.

At the same time, these patients and their loved ones also have a fierce determination to improve, and the conviction that they can find ways to improve quality of life through their own efforts.

In summary, good coping skills and a positive attitude can make a significant difference to your patient's condition and to your and the patient's quality of life.