3: Fibromyalgia

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(Note: For an updated overview of fibromyalgia, see the article About Fibromyalgia.)

Fibromyalgia (FM) is a common medical condition charac- terized by widespread pain and stiffness, fatigue, sleep problems and cognitive difficulties. The disease does not damage tissue and is not progressive or fatal. The severity of fibromyalgia varies greatly from patient to patient. Some patients continue to work, though a significant minority are disabled.

Fibromyalgia touches many parts of a patient's life and affects the lives of those who know her. Patients struggle to control symptoms and to adapt to the limitations and stresses brought by their illness. Also, they must deal with loss, uncertainty and, often, lack of understanding from others.

Family members have to come to terms with loss as well and frequently take on new responsibilities. There are usually financial consequences; many patients stop working, reduce their hours or retire early.

Symptoms

Fibromyalgia is characterized by the presence of multiple symptoms. The severity of symptoms often waxes and wanes. The most common symptoms are pain, poor sleep, fatigue and cognitive problems.

Pain: Widespread pain is the most prominent symptom of fibromyalgia. The pain, which is described as aching, burning or stabbing, is generally felt all over the body, though it can start in one region and spread or move from one area to another.

It may be accompanied by neurological problems such as tingling, and burning or numbness in the hands, arms, feet, legs or face. The pain may be intensified by overactivity, non-restorative sleep, anxiety and stress, and changes in the weather.

Poor Sleep: The second-most common symptom of FM is poor sleep. Patients may have trouble falling asleep or may wake up frequently. In most cases, sleep is not experienced as restorative or refreshing, probably because of the limited time spent in deep sleep. Most patients suffer from a sleep disorder, but poor sleep is also caused by other factors such as stress, overactivity, and the absence of a good sleep environment or good sleep habits.

Fatigue: About three-quarters of FM patients report fatigue of the type felt by people with CFS. Characterized by a deep sense of exhaustion, fatigue can manifest as listlessness, sleepiness and a reduced tolerance for exercise. Like pain, the fatigue of FM can be intensified by overactivity, poor sleep, emotions and stress.

Cognitive Problems: Many fibromyalgia patients experience cognitive difficulties. Often called "brain fog" or "fibro fog," cognitive problems include confusion, fumbling for words, lapses in memory and difficulty concentrating. Fibro fog is often aggravated by excessive activity, non-restorative sleep, strong emotions, stress and too much sensory input.

Other Symptoms: 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.

Who Gets Fibromyalgia?

Like CFS, fibromyalgia is a common illness. Estimates vary, but there are probably at least four to five million people in the United States with fibromyalgia, possibly many more. Studies suggest that more than 90% are women.

Diagnosis

There is no diagnostic marker for the illness in a patient's blood or evidence of the illness that appears through X-rays or other testing. Given the absence of diagnostic tests, fibromyalgia is identified from the patient's report of symptoms, a medical history and a physical examination. Diagnosis is often a prolonged process. Studies suggest that it takes an average of five years after the first appearance of symptoms to get a diagnosis.

Fibromyalgia is diagnosed through identification of a particular pattern of symptoms. The criteria for diagnosis are:

1) A history of at least several months of pain many parts of the body (left and right sides, above and below the waist)

2) Pain in at least 11 of 18 specific "tender points" on the body. Tender points are locations on the body that are painful when pressed. Such points in fibromyalgia are found in particular locations around the neck, shoulders, chest, elbows, lower back, hips and knees.

Tenderpoints

Fibromyalgia can develop on its own or in combination with one or more additional medical problems. More than half of fibromyalgia patients also experience Chronic Fatigue Syndrome.

Other frequently reported illnesses include arthritis, lupus, depression, irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD), irritable bladder syndrome (interstitial cystitis), myofascial pain, chemical sensitivity, Lyme disease, sleep disorders such as apnea and restless legs syndrome, and thyroid problems. The presence of other illnesses can intensify fibromyalgia symptoms. Treating the other conditions usually alleviates fibromyalgia as well.

Causes

The cause of fibromyalgia is still unknown, but current research focuses on how pain signals are amplified by the central nervous system (spinal cord and brain). This theory is often called the "central sensitization" model, a contrast to the idea of pain as a signal sent to the brain in response to an event in the body.

Fibromyalgia patients have elevated levels of substance P, a neurotransmitter that communicates pain signals, and lower levels of chemicals such as serotonin and dopamine that mute pain sensations.

There is evidence suggesting a genetic susceptibility to fibromyalgia. The onset of FM is often triggered by an illness or trauma such as a fall or accident. It is possible that there are multiple causes for fibromyalgia, each of which produces increased pain.

Treatments

Like treatment of CFS, treatment of fibromyalgia focuses on controlling symptoms rather than curing the illness. 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.

Medication regimes are usually developed through experimentation with different medications and dosages. Exercise is commonly recommended, both for reducing pain and stiffness, and for reversing deconditioning. The lifestyle adjustment strategies used with CFS, such as pacing and stress management, are also appropriate for fibromyalgia patients.

The three principles that govern treatment of CFS apply also to fibromyalgia: 1) the use of multiple strategies, 2) experimentation, and 3) an emphasis on lifestyle change. Because fibromyalgia patients usually have more than one symptom and because each symptom usually has more than one cause, it is helpful to use a combination of treatments and coping strategies.

Since there is no standard treatment for fibromyalgia and treatments helpful during one period may later become ineffective, patients have to experiment to find what works for them. Lifestyle adjustments, which are inexpensive and safe, typically produce more predictable results.

Pain

Pain relief is often sought through medications, which may include over-the-counter pain relievers, prescription pain relievers, prescription medications intended primarily for sleep, and anti-depressants. Exercise is often used to reduce stiffness and to strengthen muscles.

Just as with CFS, pacing is an effective strategy for controlling pain in FM. Staying within activity limits, having short activity periods, switching tasks frequently and taking rest breaks are all helpful. Because pain is felt more intensely when a person is tired or under stress, reducing fatigue and stress also reduces pain.

Similarly, poor sleep intensifies pain, so improving sleep is also a way to control pain. Other common pain control strategies include heat and cold treatments, massage, and attention to body mechanics (how the body is held and how it is moved).

Sleep

Treating sleep is another area in which use of an experimental approach involving a variety of strategies is helpful. No single medication has proven helpful in treating sleep problems for all FM patients. Also, drugs that are effective for a while may later become ineffective.

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.

Sleep can be improved through using good sleep habits such as having regular times to go to bed and get up, limiting daytime napping, avoiding caffeine and other stimulants before bedtime, and practicing relaxation to fall asleep.

Good sleep is also promoted by having a quiet environment, a good bed and an appropriate temperature in the bedroom. Reducing pain before going to bed and letting go of worries with techniques such as a worry log or To Do list for the next day can also help improve sleep.

Fatigue

Fatigue is usually addressed using lifestyle change, especially pacing. Pacing 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. Stress management, exercise and healthy eating can help reduce fatigue by addressing other causes of fatigue: stress, deconditioning and poor nutrition.

Cognitive Problems

Strategies that are generally helpful for reducing the symptoms of fibromyalgia, such as pacing and stress management, also help reduce brain fog. Other techniques that often produce some control of 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, fibromyalgia has comprehensive effects, touching many parts of patients' lives and creating many challenges. 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.

Prognosis

Fibromyalgia is neither progressive, nor fatal. Just as there is no cure for CFS, there is no treatment that cures fibromyalgia. But, as with CFS, some patients experience a spontaneous recovery and many experience notable improvement.

In fact, improvement is probably the most common outcome for fibromyalgia, experienced by half to two thirds or so of patients. A number of medications for the treatment of fibromyalgia are being studied; the first prescription drug specifically for FM may be approved within the next year or two.

As with CFS, the course of fibromyalgia may vary. The location and severity of pain can change over time. Symptoms can be intermittent, fluctuating or persistent. Triggers of symptom intensification may include excessive activity, inactivity, stress, trauma, repetitive motion, poor sleep, strong emotions and weather changes.

References

Fransen, Jenny and Jon Russell. The Fibromyalgia Help Book: A Practical Guide to Living Better with Fibromyalgia. St. Paul Minn.: Smith House, 1996.

Goldenberg, Don. Fibromyalgia. New York: Penguin Putnam, Guilford Press, 2002.

Matallana, Lynne. The Complete Idiot's Guide to Fibromyalgia. New York: Penguin, 2005.

Starlanyl, Devin and Mary Ellen Copeland. Fibromyalgia & Chronic Myofascial Pain: A Survival Manual. Oakland: New Harbinger, 2001.