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 Fibromyalgia?
Fibromyalgia (FM) is a common medical condition characterized 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 people with FM 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.
What Are Its Symptoms?
Fibromyalgia is characterized by the presence of multiple symptoms. The severity of symptoms often waxes and wanes.
Pain: Widespread pain is the most common symptom of fibromyalgia. The pain 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.
Sleep Problems: 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 “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.
How is it Diagnosed?
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, FM is identified from the patient’s report of symptoms and a medical history and 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.
Since 1990, fibromyalgia has been diagnosed through the identification of a particular pattern of symptoms:
- A history of at least several months of pain in many parts of the body (left and right sides, above and below the waist)
- 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.
In 2010, American College of Rheumatology provisionally accepted alternative criteria for diagnosing FM. The new criteria assess pain differently and also include assessment of other symptoms. Pain is rated using the widespread pain index (19 points on the body). Also, symptom severity is rated on symptoms that include fatigue, unrefreshing sleep, cognitive problems and physical problems such as headaches, bowel issues, nausea, dizziness and numbness/tingling. A diagnosis of FM is made based on a combination of the pain index and symptom severity scores.
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, depression, irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD), irritable bladder syndrome (interstitial cystitis), myofascial pain, sleep disorders such as apnea and restless legs syndrome, and thyroid problems. Treating other conditions can reduce fibromyalgia symptoms.
What Causes FM?
The cause of fibromyalgia is still unknown but current research focuses on the idea of abnormal processing of pain signals in the central nervous system. 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 produce increased pain.
How is Fibromyalgia Treated?
Like treatment of CFS, treatment of fibromyalgia focuses on controlling symptoms rather than cure. 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 regimens 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.
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, attention to body mechanics (how the body is held and how it moves), and relaxation and other stress reduction measures.
Pain relief is often sought 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).
In 2007, the FDA approved Lyrica (pregabalin) as the first drug tested and proved helpful for the treatment of fibromyalgia. Since then, two other drugs have been approved: Cymbalta (duloxetine hydrochloride) and Savella (milnacipran HCl). Exercise is often used to reduce stiffness and strengthen muscles.
No single medication has proven helpful in treating sleep problems for all patients. Also, drugs that are effective for a while may later become ineffective. Thus, treating sleep is an area in which use of an experimental approach involving a variety of strategies is helpful. 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. Reducing pain before going to bed and letting go of worries with techniques such as a “worry log” or “to do” list can also help improve 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.
Fatigue is usually addressed using lifestyle change, especially pacing. Pacing or 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. Stress management, exercise and healthy eating can help reduce fatigue by addressing other causes of fatigue: stress, deconditioning and poor nutrition.
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, 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, fibromyalgia has comprehensive effects, touching many parts of patients’ lives and creating 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.
What is the 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 of patients.
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.
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.