Chronic Fatigue Syndrome

Topic Overview

What is chronic fatigue syndrome (CFS)?

Chronic fatigue syndrome, sometimes called CFS, is a condition that makes you feel so tired that you can't do all of your normal, daily activities. There are other symptoms too, but being very tired for at least 6 months is the main one.

Many people improve in a year or two and do not have a relapse. Some people continue to have severe fatigue and other symptoms for many years.

The disease is not well understood. Most experts now believe that it is a separate illness with its own set of symptoms. But some doctors do not believe this.

There are no tests for CFS. Because of this, many people have trouble accepting their disease or getting their friends and family to do so. Having people who believe your diagnosis and support you is very important. Having a doctor you can trust is critical.

Your tiredness is real. It's not 'in your head.' It is your body's reaction to a combination of emotional and physical factors.

What causes CFS?

Doctors don't know what causes CFS. Sometimes it begins after an illness like the flu, but there is no proof of any connection. It's likely that a number of factors or triggers come together to cause CFS.

What are the symptoms?

Extreme tiredness, or fatigue, is the main symptom. If you have CFS:

• You may feel exhausted all or much of the time.
• You may have problems sleeping, or you may wake up feeling tired or not rested.
• It may be harder for you to think clearly, to concentrate, and to remember things.
• You may also have headaches, muscle and joint pain, a sore throat, and tender glands in your neck or armpits.
• Your symptoms may flare up after a mental or physical activity that used to be no problem for you.

Depression is common with CFS, and it can make your other symptoms worse. Antidepressant medicines can help you feel better.

How is CFS diagnosed?

There are no tests for CFS. Doctors can diagnose it only by ruling out other possible causes of your fatigue. Many other health problems can cause fatigue, and most people with fatigue have something other than chronic fatigue syndrome.

How is it treated?

There is no treatment for CFS itself, but many of its symptoms can be treated. A good relationship with your doctor is important, because the two of you will need to work together to find a combination of medicines and behavior changes that will help you get better. Some trial and error may be necessary, because no single combination of treatments works for everyone.

Home treatment is very important. You may need to change your daily schedule, learn better sleep habits, and start getting regular gentle exercise.

Counseling and a gradual increase in exercise help people with CFS get better.

Even though it may not be easy, keeping a good attitude really helps. Try not to get caught in a cycle of frustration, anger, and depression. Learning to cope with your symptoms and talking to others who have the same illness can help you keep a good attitude.

Frequently Asked Questions

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	Chronic fatigue syndrome: Using cognitive-behavioral therapy
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Cause

Doctors do not know what causes chronic fatigue syndrome (CFS). Some people develop it after having a viral or bacterial infection, such as the flu, but there is no evidence to prove this link. Other theories point to the immune system, the nervous system, glands and hormones, and family history. But again, there's not enough evidence to prove any connection.¹

Symptoms

The main symptom of chronic fatigue syndrome (CFS) is a devastating tiredness or exhaustion that has lasted at least 6 months and does not improve much with rest. This fatigue also is so severe that it interferes with your work, your play, and your social activities. The fatigue and other symptoms described below may begin suddenly or they may develop gradually over weeks or months.

Other long-term symptoms include:

• Forgetfulness, memory loss, confusion, or difficulty concentrating.
• Sore throat.
• Tender lymph nodes in the neck or armpits.
• Muscle pain.
• Joint pain without redness or swelling.
• Headaches that are different from other headaches you have had in the past.
• Unrefreshing sleep (waking up feeling tired or not rested).

Because CFS is not easily diagnosed, health experts have established some rules to help them recognize the disease. To be diagnosed with CFS, you must have fatigue and at least four of the symptoms listed above. At least four of your symptoms must have started at the same time as or after your fatigue began, and they must have lasted for at least 6 months.

However, if you have persistent, unexplained tiredness and other typical CFS symptoms but do not quite meet these criteria (for instance, if you have had symptoms for less than 6 months), you may still be presumed to have CFS, and you may need treatment.

Some people with CFS develop a condition in which their heart rate increases and their blood pressure drops when they stand or sit up from a reclining position. This is often described as feeling "lightheaded" or feeling faint or dizzy. This condition is called orthostatic hypotension.

Depression is common and can make your other symptoms worse. Antidepressant medicines can help you feel better.

CFS causes symptoms that are the same as many other diseases, especially early on. For this reason, it can be diagnosed only after a thorough evaluation has ruled out other conditions with similar symptoms.

What Happens

In some cases, chronic fatigue syndrome (CFS) develops after an illness such as mononucleosis (mono) or flu, or after a period of unusual stress. But it may also develop without warning, even if you have not been sick.

The fatigue may come upon you gradually or quite suddenly. Because fatigue can be vague and can be caused by many things, you might not pay attention to the problem for several weeks or months. It is hard to say what is normal with CFS because the diagnosis often is not clear for some time.

In general:

• Symptoms are worse at the beginning.
• Later, you may feel better for a time and then feel worse again. Or, your symptoms may disappear entirely. Many people improve in a year or two and do not have a relapse. Some people continue to have severe fatigue and other symptoms for many years.
• Research shows that the seasons affect when many people get CFS. The highest numbers of people who develop the illness are diagnosed from November through January.²

Some people find the fatigue, pain, and thinking problems caused by CFS greatly hamper their lives, but other people are not nearly as affected.

• Most people are still able to perform some of their usual activities at home and work, but they often are unusually tired after they do them. People often have to cut down on social and recreational activities to save their energy for work and family.
• Other people have trouble doing most or all of their daily activities, including work and the basic chores of daily living. They may have to carefully plan how to best use their energy.
• People who are most severely affected by CFS may have difficulty getting out of bed and may require help with basic activities such as dressing, eating, and bathing.

Dealing with depression

As with many long-lasting illnesses, you may develop depression at some point-between 50% and 66% of people with CFS do.³ Here are some important facts to keep in mind:

• Your mind and body are connected and influence each other. Physical illnesses can be made worse-or better-by feelings and attitudes, and vice versa.
• Your fatigue is real, not imaginary. It is your body's reaction to a complex interaction of both emotional and physical factors. To successfully manage your CFS and get back to normal, you need to pay careful attention to how what you are doing and feeling affects your symptoms.
• CFS is often made worse by depression or anxiety. Like any other medical illness, these conditions may need to be treated. Helping your depression or anxiety can, in turn, help your other CFS symptoms. This does not mean that your symptoms are all in your head. It does mean that your mental health can affect your physical health.

If you have CFS and feel depressed, talk to your doctor. Medicine for depression may help you feel better and help you cope with the stresses of having a chronic illness.

What Increases Your Risk

People with chronic fatigue syndrome (CFS) are generally 25 to 45 years of age. Women are more likely to have CFS.

CFS is rare in children. It may occur in teenagers, especially young teenage girls. Unlike adults, teenagers are more likely to develop CFS after having an illness such as mononucleosis or flu.

Various studies report that between 1 and 5 people per 1,000 in the United States may have CFS-enough to call it a major public health problem.⁴

When To Call a Doctor

It's important to talk to your doctor about any symptoms you may have. In one study, early detection of chronic fatigue syndrome (CFS) and early treatment of its symptoms resulted in a quicker recovery when people informed their doctors of their symptoms.⁵

Call your doctor if you have:

• Severe fatigue that lasts longer than 2 weeks, causes you to limit your usual activities, and does not improve with rest.
• Sleep problems (being unable to fall asleep or stay asleep, tossing and turning, waking up feeling tired or not rested) that last for more than 1 to 2 months.
• Swelling in the glands in your neck or armpits (without other signs of infection) that lasts for at least 2 weeks.
• Severe fatigue along with frequent urination (especially at night), extreme thirst, weight loss, or blurred vision. Fatigue that occurs with some or all of these may be a symptom of undiagnosed diabetes.

Because there are no tests that can confirm a diagnosis of CFS, many people have trouble accepting their disease or getting their friends and family to do so. You may even experience feelings of guilt. Having people who believe your diagnosis and support you is very important. Having a doctor you can trust is critical.

Watchful Waiting

Fatigue is very common and many other things can cause it. Stress, lack of sleep, lack of exercise, illness, or another health condition may be to blame. Most people with fatigue do not have CFS.

Watchful waiting refers to a period of time in which you are being monitored by your doctor but are not receiving treatment. It is also called observation or surveillance. A month or two of paying close attention to your sleep habits, getting regular moderate exercise, trying to control stress, and eating a balanced diet will take care of most cases of fatigue not caused by CFS or another medical problem. However, if your fatigue has not improved after 1 to 2 months of self-care, or if fatigue is persistent and limits your usual activities, call your doctor.

If you have been diagnosed with CFS, pay attention to any new symptoms that you develop and report them to your doctor. Although CFS can cause a variety of symptoms, new symptoms could be caused by another illness or medical condition that may need to be evaluated and treated.

Who To See

The following health professionals can evaluate fatigue and other symptoms:

• Nurse practitioner
• Physician assistant
• Family doctor
• Internist

There are doctors who specialize in the treatment of CFS. Get a recommendation from your family doctor or a local CFS support group before making an appointment with a specialist. It is always wise to start with your family doctor. You may also be referred to a psychologist or psychiatrist.

To prepare for your appointment, see the topic Making the Most of Your Appointment.

Exams and Tests

Chronic fatigue syndrome (CFS) is hard to diagnose. Fatigue is an extremely common problem, and it can have many other causes. CFS can be diagnosed only by ruling out other conditions.

First, your doctor will take your medical history and do a physical exam. Experts have come up with a specific list of symptoms to decide whether a person has CFS. Doctors use a variety of tests to rule out other conditions. These tests usually include:

• Complete blood count (CBC), which provides important information about the kinds and numbers of cells in your blood.
• Erythrocyte sedimentation rate (ESR), which measures how quickly red blood cells (erythrocytes) settle in a test tube. This tells whether or not certain types of inflammation are present.
• Blood glucose level, used to check for diabetes.
• Thyroid-stimulating hormone test, used to detect problems that affect the thyroid gland.
• Chemistry panel, a blood test that provides information about your general state of health.
• Urinalysis, a urine test that can provide information about your overall health and clues to many conditions.

These are routine lab tests. Other tests may be done if your symptoms, history, and physical exam suggest other possible problems. Additional tests may include:

• ANA (antinuclear antibodies), to check for lupus (systemic lupus erythematosus).
• Rheumatoid factor, to check for rheumatoid arthritis.
• HIV test, to check for human immunodeficiency virus (HIV) infection.
• Tests for Lyme disease, if you may have been exposed to ticks.
• Skin test, for tuberculosis.

Some doctors may order tests that check your immune system. These can be expensive and generally are done only in research settings. In addition, it's hard to know what the findings of these tests mean because so little is known about the immune system's connection to chronic fatigue syndrome.

Treatment Overview

Treatment for chronic fatigue syndrome (CFS) focuses on making you feel better so that you can resume a normal life. Simple measures you can take at home-such as improving your sleep habits and getting gentle exercise-are important parts of treatment. Talking with a counselor or psychologist has been proven to be helpful for people with CFS.^{6, 7}

Although there is no cure for CFS, many of its symptoms do respond to treatment.

Initial treatment

Pain relievers that you can buy without a prescription, such as acetaminophen, ibuprofen, or aspirin, may help relieve headaches, muscle and joint pain, and other physical symptoms. Narcotic pain relievers, which require a prescription from a health professional, may become addictive if they are used frequently, so they are generally prescribed in the most severe cases on a short-term basis.

Taking antidepressants and getting counseling can help relieve your other symptoms, whether you have depression or not. Antidepressants are used to improve your mood, control your pain, and help you sleep. With CFS, treating both physical and psychological factors is important.

There are many unproven remedies, such as special diets or mineral supplements, that some people recommend for treating CFS. There is no evidence that any of these are effective.^{1, 6}

Ongoing treatment

Home treatment is very important. Adjusting your daily schedule, improving your sleep habits, and getting regular, gentle exercise can often help you feel better. Beginning a graded exercise program, in which the level of exercise starts out easy and gradually grows more challenging, should be part of your treatment. Studies have shown that a carefully planned exercise program can help people with CFS regain their strength and energy and feel better.⁶ Remember that if you have CFS, you will be able to do only light exercise. Doing too much or increasing your level of exercise too quickly can make your symptoms worse. For information about starting an exercise program, see:

Chronic fatigue syndrome: Using graded exercise to get more energy.

A type of counseling called cognitive-behavioral therapy has been shown to help people with CFS function better on a day-to-day basis.^{6, 7} It is counseling that teaches people how to change the way they think and behave to cope more successfully with their fatigue and other symptoms.

Even though it's not easy, keeping a good attitude is a great benefit for people with CFS.¹ Your mind and body are connected and influence each other. Physical illnesses can be made worse-or better-by your feelings and attitudes, and vice versa. Learn as much as you can about your disease and work with your doctor to learn ways to cope with your symptoms. Get emotional support from your health professionals as well as from your family and friends. It's easy to get caught in a cycle of frustration, anger, and depression. Learning to cope with your symptoms will help you avoid that cycle. For more information, see:

Chronic fatigue syndrome: Using cognitive-behavioral therapy.

Regular visits to your doctor every few months can help track your progress and evaluate any changes in your symptoms that might indicate that your fatigue is caused by something other than CFS.

Treatment if the condition gets worse

The good news about CFS is that it rarely gets worse over time. In some people, it goes away in 1 or 2 years. Others have periods of relatively good health followed by periods of severe symptoms and great difficulty. Relapses are not unusual. Continue to see your doctor periodically to monitor changes in your condition.

What To Think About

Although the cause of chronic fatigue syndrome (CFS) is not well understood, the fatigue is real and can make day-to-day activities difficult. As you work toward regaining your strength and energy, don't go too fast. Aim for a gradual return to your previous level of activity.

Doctors focus on giving support, information, and counseling, and on treating any problems that arise as a result of symptoms of CFS. If you are depressed, your doctor may prescribe an antidepressant. Medicines are also prescribed to help you sleep, relieve your pain, and treat blood-pressure problems. Blood pressure problems may include orthostatic hypotension in which your heart beats faster and your blood pressure drops when you stand or sit up quickly.

Joining a support group can reassure you that there are others who share your experience, that you are not alone. Talking to others who have CFS can help you maintain a good attitude, which is critically important to feeling better.

Prevention

Chronic fatigue syndrome (CFS) can be neither prevented nor cured. Home treatment and, when appropriate, certain medicines can help control or reduce symptoms.

Home Treatment

Home treatment is the most important part of treating chronic fatigue syndrome (CFS). If you have CFS, you can take steps to control and sometimes relieve your symptoms:

• Adjust your schedule to take advantage of times when you feel more energetic and less tired. Keep a diary for a week or so and record the times of day when you have energy and when you are tired. If there is a pattern to how your energy level changes during the day, try to plan your work, school, or other activities around that pattern.
• Try not to do too much when you are feeling energetic. If you do too much, you may become overtired, and it may take several days for you to recover.
• Improve your sleep habits. Sleep problems may contribute to your fatigue and other symptoms.
  • Go to bed only when you are sleepy, and get up at the same time every day, regardless of whether you feel rested.
  • If you lie awake for longer than 15 minutes, get up, leave the bedroom, and do something quiet until you feel sleepy again.
  • Avoid alcohol, caffeine, and tobacco before bed.
  • Keep the bedroom at a comfortable temperature, and eliminate all sound and light disturbances.
  • Make sure your mattress provides good support. Use a neck support pillow to keep your head and neck from moving too much when you sleep.
  • Take naps if you need to. Keep them short (20 to 60 minutes), and try not to take them late in the day or evening.
• Get light, gentle exercise regularly. Stretching is a good beginning exercise. Light aerobic exercise such as walking, swimming, or riding a bicycle or stationary bike can also be helpful. You need to find a balance between exercising enough to benefit from it and exercising so much that you become overtired.

  Chronic fatigue syndrome: Using graded exercise to get more energy

• Try taking nonprescription pain medicines to relieve muscle and joint pain and headaches caused by CFS. Medicines that may be helpful include acetaminophen (such as Tylenol), aspirin, ibuprofen (such as Advil or Motrin), or naproxen sodium (such as Aleve). Do not take aspirin if you are younger than 20 because of the risk of Reye's syndrome.
• Join a support group. These groups can be a good source of information and tips for managing your illness and an opportunity to share your frustrations and problems with others who have CFS. Ask your doctor or contact a local hospital for the location of a support group near you.
• Avoid unproven remedies such as special diets or vitamins.
• Eat a balanced diet that is low in fat and high in carbohydrates and fiber.

Be patient, and keep in mind that consistent home treatment usually helps relieve or control CFS symptoms. Your doctor may suggest cognitive-behavioral therapy to help you with your home treatment. For information, see:

Chronic fatigue syndrome: Using cognitive-behavioral therapy.

Medications

Medicines do not cure chronic fatigue syndrome (CFS): they only help relieve symptoms. They may not greatly speed up your return to full activity; but when they are used properly, they can help you feel better.

Medication Choices

Over the counter medicines include:

• Pain relievers and anti-inflammatory drugs: Over-the-counter drugs, including acetaminophen (for example, Tylenol), aspirin, ibuprofen (for example, Advil, Motrin), or naproxen sodium (for example, Aleve), are used to treat frequent or severe joint and muscle pain, headaches, and fevers. Do not take aspirin if you are younger than 20 because of the risk of Reye's syndrome.
• Antihistamines and decongestants:These over-the-counter drugs are used to relieve nasal stuffiness and other symptoms caused by colds and allergies.

Prescription medicines include:

• Codeine, morphine, and meperidine (Demerol): These drugs are prescribed by a doctor for pain that is not relieved by over-the-counter drugs. They generally are reserved for the most severe cases. Because of the risk of addiction, they are used only on a short-term basis.
• Antidepressants: Antidepressants are prescribed by a doctor to ease depression and anxiety, improve your ability to concentrate, help you sleep better, and decrease fatigue and muscle pain.

FDA Advisory. The U.S. Food and Drug Administration (FDA) has issued an advisory on antidepressant medicines and the risk of suicide. The FDA does not recommend that people stop using these medicines. Instead, a person taking antidepressants should be watched for warning signs of suicide. This is especially important at the beginning of treatment or when the doses are changed.

What To Think About

• Corticosteroids have been shown to help relieve CFS symptoms somewhat, but they generally are not recommended because of their side effects. Although fludrocortisone has been commonly used in the past to treat orthostatic hypotension (a condition that people who have CFS are prone to in which their heart rate increases and their blood pressure drops when they stand or sit up quickly from a reclining position), recent studies show that it offers no real benefit when used on its own.^{3, 8}
• Depression often becomes a part of chronic fatigue syndrome and can make your symptoms worse. Like any medical illness, depression needs to be treated. If you have CFS and are depressed, tell your doctor how you feel. Antidepressants and counseling can help you maintain a good attitude, which has been shown to be a great benefit to people with CFS.¹

Surgery

There is no surgical treatment for chronic fatigue syndrome.

Other Treatment

As with many conditions that have no clear cause and no effective medical treatment, there are many treatments outside of conventional medicine that some people recommend for chronic fatigue syndrome (CFS). None have been shown to be effective.

But there are safe nontraditional therapies-acupuncture, yoga, or massage therapy, for example-that can relieve pain and stress, ease muscle tension, help you feel better and healthier, and improve your outlook and quality of life.

Other Treatment Choices

Some popular complementary therapies include:

• Acupuncture.
• Massage therapy.
• Yoga.

What To Think About

None of these complementary therapies has been proven effective in treating CFS, but some people have reported feeling better after using them. If you have CFS and are thinking about trying a complementary therapy, get the facts before you begin. Consider these questions with your doctor:

• Is it safe? Do not use treatments that could harm you, such as unusual diets or excessive vitamin or mineral supplements. (A daily multiple vitamin is okay. Try to avoid taking more than 100% of the recommended daily allowance for any vitamin or mineral unless your doctor prescribes it.)
• Is the product manufactured reliably? Vitamin and mineral supplements and herbal products are not subject to the same regulations as medicines. Ingredients may vary from one maker to another. Read the labels carefully and choose well-known brands you trust.
• Does it work? It may be hard to tell whether a treatment is working. Keep in mind that when you get better after treatment, the treatment may not be the reason for your improvement. Symptoms of CFS often improve on their own, or the treatment may be causing a placebo effect, which makes you feel better.
• How much does it cost? An expensive treatment that may or may not help you may not be worth the high cost. Beware of products or treatment providers who require a large financial investment up front or a series of costly treatments.
• Will it improve my general health? Even if complementary therapies are not effective in treating CFS, some of them are safe and healthy habits that may improve your general well-being and may be worth trying.

For more information, see the topic Complementary Medicine.

With a hard-to-treat disease like CFS, it can be tempting to jump at the promise of an effective treatment. Be careful. Avoid products that claim to have a secret ingredient or to cure CFS.

Other Places To Get Help

Online Resources

Organization

Related Information

• Depression
• Fibromyalgia

References

Citations

1. Afari N, Buchwald D (2003). Chronic fatigue syndrome: A review. American Journal of Psychiatry, 160(2): 221-236.

2. Zhang QW, et al. (2000). Chronic fatigue syndrome beginning suddenly occurs seasonally over the year. Chronobiology International, 17(1): 95-99.

3. Straus SE (2005). Chronic fatigue syndrome. In E Braunwald, ed., Harrison's Principles of Internal Medicine, 16th ed., vol. 2, pp. 2545-2547. New York: McGraw-Hill.

4. Reyes M, et al. (2003). Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. In Archives of Internal Medicine, 163(13): 1530-1536.

5. Nisenbaum R, et al. (2003). A population-based study of the clinical course of chronic fatigue syndrome. Health and Quality of Life Outcomes, 1(1): 49.

6. Reid S, et al. (2006). Chronic fatigue syndrome, search date September 2006. Online version of Clinical Evidence (15): 1-15.

7. Prins JB, et al. (2001). Cognitive behaviour therapy for chronic fatigue syndrome: A multicentre randomised controlled trial. Lancet, 357(9259): 841-847.

8. Rowe PC, et al. (2001). Fludrocortisone acetate to treat neurally mediated hypotension in chronic fatigue syndrome. JAMA, 285(1): 52-59.

Other Works Consulted

• Ciccone DS, et al. (2003). Psychiatric morbidity in the chronic fatigue syndrome: Are patients with personality disorder more physically impaired? Journal of Psychosomatic Research, 54(5): 445-452.

• Engleberg NC (2005). Chronic fatigue syndrome. In GL Mandell et al., eds., Mandell, Douglas, and Bennett's Principles and Practice of Infectious Diseases, 6th ed., pp. 1720-1726. Philadelphia: Churchill Livingstone.

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