The following article is provided with kind permission by The CFIDS & Fibromyalgia Self-Help Program, a non-profit organization created and directed by Bruce Campbell, Ph.D. to offer offering low-cost online self-help courses and other resources for people with CFS/FM.
What is Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome, also known by other names such as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) and ME (myalgic encephalomyelitis or myalgic encephalopathy), is a long-term disorder affecting the brain and other systems, including the immune system, the endocrine system and the autonomic system. 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.
The severity of CFS varies greatly. While some patients continue to lead relatively normal 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 85%.
As a severe, long-term illness, CFS affects many parts of patients’ lives, creating many challenges and requiring great 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, adjusting family responsibilities, coping with increased stress and intense emotions, and coming to terms with loss.
What Are Its Symptoms?
People with CFS usually experience several, or even many, symptoms. (CFS symptoms 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. Fatigue can be intensified by 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 as the feeling of being 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 unrefreshing. 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 by 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 more than one million people with CFS in the United States. Research has disproved the earlier idea of CFS as the “yuppie flu.” The illness affects all racial and economic groups, striking more vulnerable populations more frequently than upper middle class whites. About three-quarters of patients are women.
How is it Diagnosed?
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. 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. Besides fibromyalgia, these may include thyroid problems, anemia, Lyme disease, lupus, MS, hepatitis, sleep disorders and depression. 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)
Tender lymph nodes in the neck or armpit
Joint pain without redness or swelling
Headaches of a new or different type
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 patient’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.
What Causes CFS?
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 be an umbrella term for several to many illnesses. Whether it is one or more illnesses will be decided by future research.
How is CFS Treated?
Because there is, so far, no cure for CFS, treatment 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 advocate in our program: making use of medical treatments where appropriate, but focusing on lifestyle adjustments such as pacing, control of stress and good support. Self-management techniques are often the most potent strategies for treating CFS and fibromyalgia. CFS/FM physician Dr. Charles Lapp summarizes the appeal of this approach 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.”
The principle and probably most effective technique for controlling fatigue is adjusting to the limits imposed by CFS, which we call “living within the energy envelope. 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, such as stress and emotions, deconditioning and poor nutrition. Stress management, exercise and healthy eating can help reduce fatigue by addressing these causes.
Just as with fatigue, pain is a reflection of the limits imposed by illness, so pacing is usually helpful. Knowing your activity limits and staying within them, having short activity periods, switching from task to task frequently 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 medications intended primarily for sleep, anti-depressants such as Elavil (Amitriptyline), Prozac and Paxil, anti-epileptic drugs, and prescription pain relievers such as Ultram (tramadol).
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 a good bed, the absence of noise 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 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.
Sleep disorders such as sleep apnea and restless legs syndrome are very common in people with CFS and sleep can be improved by treating them.
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, doing one thing at a time, limiting sensory input, using lists and other reminders, having daily and weekly routines, and keeping an orderly physical environment.
Stress, Emotions, Support & Loss
As mentioned earlier, CFS has comprehensive effects, touching many parts of patients’ lives and creating challenges besides 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.
What is the Prognosis?
There is so far no cure for CFS and its course varies greatly. Probably only a small number of patients 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.
Editor’s Note: The CFIDS & Fibromyalgia Self-Help 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.