The Patient's Guide to Chronic Fatigue Syndrome & Fibromyalgia
2: Chronic Fatigue Syndrome
[Note: Chapter below was written in 2006. For an updated overview of CFS, see the article About Chronic Fatigue Syndrome.]
Before we begin our discussion of how to live well with Chronic Fatigue Syndrome (CFS) and fibromyalgia, this chapter and the next offer an overview of the two illnesses, focusing on symptoms, diagnosis, treatments and prognosis. This chapter discusses CFS, the next chapter FM.
Brief Description of CFS
Chronic Fatigue Syndrome, also known by other names such as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) and myalgic encephalomyelitis (ME), is a long-term disorder affecting the brain and other systems. Debilitating fatigue is usually the most prominent symptom. Other common symptoms include poor sleep, body pain and mental confusion ("brain fog"). Emotional problems such as depression, anxiety, irritability and grief, are common.
As a severe, long-term illness, CFS affects many parts of patients' lives, creating many challenges and requiring many adjustments. Patients must struggle to control their symptoms and adapt their lives to the limits imposed by their illness. Adaptations may include reducing or eliminating paid work, reducing family responsibilities, coping with increased stress and intense emotions, and coming to terms with loss.
The severity of CFS varies greatly. While some patients continue to lead relatively active lives, others are housebound or even bedridden. The average case of CFS creates moderate to severe symptoms and reduces a person's activity level by 50% to 75%.
People with CFS usually experience several or even many symptoms. (CFS symptom lists can be several dozen items long.) The severity of symptoms often waxes and wanes. One symptom may be the most prominent at one time, another in a later period. The four most common symptoms are fatigue, pain, poor sleep and cognitive problems.
Fatigue: Fatigue is experienced as a deep exhaustion that can be brought on by low levels of activity or for no apparent reason. Fatigue is often disproportional to the energy expended and lasts far longer than it would in a healthy person ("post-exertional malaise"). Fatigue can be intensified by a number of factors, including overactivity, poor sleep, deconditioning, stress, emotions and poor nutrition.
Pain: Pain may be experienced in the joints or, more commonly, as an overall body pain that is often described with metaphors such as feeling run over by a truck. Pain may be intensified by overactivity, non-restorative sleep, anxiety and stress, and changes in the weather.
Poor Sleep: Sleep is often experienced as not restorative or refreshing. Patients often feel as tired when they get up as before going to bed. Sleep problems are usually a part of the illness, but they may be intensified by other factors such as stress, overactivity, and the absence of a good sleep environment or good sleep habits.
Cognitive Problems; Most CFS patients experience cognitive difficulties, often called "brain fog." Cognitive problems include feeling confused, difficulty concentrating, fumbling for words and lapses in short-term memory. Brain fog can be reduced by limiting activity, getting adequate rest, managing stress and limiting sensory input.
Other Symptoms: Patients often experience other symptoms as well, which create further discomfort. Common additional symptoms 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.
Who Gets CFS?
CFS is a common illness. Research suggests that there are probably 800,000 or more adults with CFS in the United States. In addition, children and adolescents also suffer from CFS. Research has disproved the earlier idea of CFS as the "yuppie flu." The illness affects all racial and economic groups, striking vulnerable populations more frequently than upper middle class whites. About two thirds of patients are women.
Since there is as yet no diagnostic test for identifying CFS or proven physical marker for the illness, diagnosing CFS can be difficult. Severe fatigue and other symptoms of CFS can be caused by several different illnesses.
The illness is most often diagnosed in the United States using criteria developed in 1994 by an international consensus committee organized by the US Centers for Disease Control (CDC). Using their guidelines, CFS is diagnosed in a two-step process.
First, a thorough medical examination and laboratory testing are used to exclude other illnesses that have similar symptoms. These illnesses include thyroid problems, anemia, Lyme disease, lupus, MS, hepatitis, sleep disorders and depression. The doctor should also consider the possibility that CFS symptoms, especially fatigue and cognitive problems, are side effects of one or more medications taken for another condition.
Second, if other illnesses have been excluded, a patient is considered to have CFS if two further criteria are met:
- The patient has experienced at least several months of a new, debilitating fatigue that forces a substantial reduction of activity.
- The patient reports four or more of the following eight symptoms:
- Impaired memory or concentration (mental confusion)
- Sore throat
- Tender lymph nodes in the neck or armpit
- Muscle pain
- Joint pain without redness or swelling
- Headaches of a new or different type
- Non-restorative sleep
- Extreme fatigue following activity ("post-exertional malaise")
A more recent Canadian definition emphasizes five symptoms: fatigue, post-exertional malaise, disturbed sleep, pain and cognitive problems.
It is important to note that the presence of CFS does not exclude a person's having other illnesses as well. A majority of people with CFS also have fibromyalgia. Other illnesses often found in people with CFS include: irritable bowel syndrome (IBS), candida (yeast infection), food and chemical allergies, depression, and sleep disorders such as apnea and restless legs syndrome.
The cause of CFS is unknown. Some believe that it is caused by an agent entering the body, while others think it is due to the body's response, possibly to various agents. Since CFS can appear both in clusters and in individual cases, and because it manifests with a wide variety of symptoms and in a wide range of severities, some researchers suggest that CFS may prove to be several or even many illnesses. Whether it is one or more illnesses will be decided by future research.
Given the lack of understanding of the cause and the absence of a cure, treatment for CFS focuses on controlling symptoms and improving quality of life. Medical treatment is tailored to the individual patient, often focusing 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.
Many CFS 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 and getting good support. Self-management techniques are often the most potent strategies for treating CFS and fibromyalgia.
CFS/FM physician Dr. Charles Lapp summarizes this view when he states, "There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of CFS or FM."
Fatigue: The principle and probably most effective technique for controlling fatigue is adjusting one's activity level to the limits imposed by CFS, which we call "living within the energy envelope." (See Chapter 9.) Living within limits includes strategies such as setting priorities, taking regular rests, having short activity periods, living by a schedule, and managing special events like vacations and holidays.
Fatigue can also be lessened by addressing pain and poor sleep, both of which intensify fatigue. Fatigue has additional causes as well, such as stress, emotions, deconditioning and poor nutrition. Stress management, exercise and healthy eating can help reduce fatigue by addressing these causes.
Pain: Just as with fatigue, pain is a reflection of the limits imposed by illness, so pacing is usually helpful. Recognizing activity limits and staying within them, having short activity periods, switching from task to task and taking rest breaks all reduce pain.
Also, addressing fatigue and poor sleep can reduce pain. When we feel tired, we experience pain more intensely, so reducing fatigue also reduces pain. Similarly, poor sleep intensifies pain, so improving sleep is also a way to control pain.
Some pain relief may also be achieved through medications: non-prescription products such as aspirin and other over-the-counter pain relievers, prescription pain relievers such as Ultram (Tramadol) and in some cases narcotics, prescription medications intended primarily for sleep, and anti-depressants such as Elavil (Amitriptyline), Prozac and Paxil.
Sleep: Sleep can often be improved through maintaining good sleep habits and by having an environment conducive to good sleep. Sleep-related habits include keeping regular times for going to bed and getting up, limiting daytime napping, avoiding caffeine and other stimulants before bedtime, and practicing relaxation to fall asleep.
A good sleep environment includes the absence of noise, a good bed and an appropriate temperature. Reducing pain through exercise or a bath and dealing with worry can also help improve sleep.
Medications commonly used to treat sleep problems include over the counter products like melatonin and valerian, antihistamines such as Benadryl, clonazepam (Klonopin), tricyclic antidepressants such as amitriptyline (Elavil), benzodiazepines such as Halcion, and the hypnotic drug Ambien. Often, a combination of two drugs is prescribed, one to initiate sleep and another to maintain sleep.
Cognitive Problems: As with other symptoms, brain fog is addressed most effectively using a combination of approaches. Strategies that are generally helpful for CFS, such as pacing and stress management, also help control brain fog. Other techniques that patients often use to control fog include getting good sleep, limiting sensory input, using lists and other reminders, having daily and weekly routines, and keeping an orderly physical environment.
For more on treatment options for these four symptoms, see Chapter 8.
Stress, Emotions, Support & Loss: As mentioned earlier, CFS has comprehensive effects, touching many parts of patients' lives and creating additional challenges beyond dealing with symptoms. A treatment plan should address, in addition to symptom management, issues such as managing stress and emotions, strengthening support systems and coming to terms with loss.
Dealing successfully with these additional challenges usually reduces symptoms, so is also a form of symptom management. For more on stress, emotions, support and loss, see Chapters 13 to 16.
There is so far no cure for CFS 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 ranges 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 while a few worsen over time.
The course of CFS also varies. Some people with CFS make relatively steady progress, some swing between periods of improvement and times of intense symptoms, while still others have a relatively stable level of symptoms, neither improving nor declining.
Our program is based on the belief that most patients can find things to help them feel better. These strategies are not aimed at curing CFS, but they can help reduce pain and discomfort, bring greater stability and lessen suffering.
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.
CFIDS Association of America. See "About CFIDS" at www.cfids.org.