What is it?

Fibromyalgia is a syndrome associated with chronic, widespread disabling pain. Those who have fibromyalgia have aching muscles and sore necks, shoulders, and backs. They sleep poorly and are often stiff when they wake up or when they move after sitting for long periods of time. The intensity and location of the pain and the degree of fatigue may vary from day to day and may become worse with excessive exercise and with stress. Although rarely talked about, fibromyalgia is a relatively common disorder that affects about 3.4% of all women and 0.5% of all men, primarily those of early middle age. It has been estimated that on a typical day, about 5% of the people in a doctor’s waiting room are affected by fibromyalgia. For most rheumatologists, doctors who specialise in rheumatic diseases, it is the second or third most common condition diagnosed.

The pain, fatigue, and numerous other symptoms that are associated with fibromyalgia can frustrate both patient and physician. The symptoms often make the patient miserable, but they do not cause inflammation or visible damage to the affected tissues. While the pain and other symptoms come and go at random, they do not progress to a disease state or remit over time. In the past, patients were frequently told that there was nothing wrong with them – that it was “all in their head” or that their symptoms were due to depression or to stress. While there is some depression associated with fibromyalgia, it does not cause the condition; the prevalence of depression is about the same as it is with any chronic illness.

The general medical community and major health organisations now acknowledge the existence of fibromyalgia although there is still much to be learned about the condition. In 1990, the American College of Rheumatology established an official definition of fibromyalgia that has been widely adopted for use by clinicians and researchers (see Tests tab). This definition identifies common symptoms of fibromyalgia but not the cause, which is still unknown. It is thought that there are both genetic and environmental components - that something acts as a trigger in people who are predisposed to the condition. Some families have a higher incidence of the disorder. Many cases appear to start with a physical trauma or a severe illness, while other cases arise without a discernible “event.”

Many investigators believe that fibromyalgia is “all in the head” in a sense – not due to depression or stress but to altered pain processing and to changes in neurochemicals in the brain. While answers to what is causing the condition may be years away, doctors can identify patients with fibromyalgia and try to help them live relatively normal lives.

Signs and symptoms

There are many variable symptoms associated with fibromyalgia, but the condition almost always starts with chronic widespread pain and pain upon palpation in particular areas called “tender points.” Most people with fibromyalgia also have some degree of chronic fatigue and interrupted sleep.

Other common symptoms include:

• Body stiffness, especially in the morning and with prolonged sitting
• Depression and anxiety (may coexist)
• Difficulty sleeping
• Difficulty concentrating, memory lapses
• Headaches
• Paraesthesia (numbness and tingling in hands and feet)

Those affected may also experience:

• Chest pain, irregular heartbeat, shortness of breath
• Constipation
• Diarrhoea
• Difficulty swallowing
• Dizziness, balance problems
• Dry eyes, difficulty focusing
• Dry mouth
• Gas and cramping, abdominal pain
• Heartburn
• Irritable bowel syndrome (IBS)
• Itchy, dry, or blotchy skin
• Feel as though they have localised oedema (such as swollen fingers)
• Neurally mediated hypotension (blood pressure that lowers when standing)
• Restless legs syndrome and periodic limb movement during sleep
• Sensitivity to medications (more likely to have side effects)
• Temporomandibular joint dysfunction (TMD), pain in jaw joints and surrounding muscles

Fibromyalgia can and does co-exist with many other chronic illnesses such as chronic fatigue syndrome, rheumatoid arthritis, Sjögren’s syndrome, thyroid disease, multiple sclerosis, and lupus. The symptoms of these conditions may be mingled with those associated with fibromyalgia, making diagnosis more of a challenge.

Tests

At this time, there is no specific test that can be used to diagnose fibromyalgia. The syndrome is usually diagnosed by documenting the patient’s medical history, ruling out disorders and diseases that may be mimicking or exacerbating fibromyalgia, and by utilising the criteria developed by the American College of Rheumatology (ACR) in 1990. These were substantially revised in 2010 with changes made to include impact assessment of the widespread pain. A patient satisfies diagnostic criteria for fibromyalgia if the following three conditions are met:

1. Widespread pain index (WPI) ≥ 7 and symptom severity (SS) scale score ≥ 5 or WPI 3–6 and SS scale score ≥ 9.
2. Symptoms have been present at a similar level for at least 3 months.
3. The patient does not have a disorder that would otherwise explain the pain.

Ascertainment

1) WPI: note the number areas in which the patient has had pain over the last week. In how many areas has the patient had pain? Score will be between 0 and 19.

• Shoulder girdle, left; Hip (buttock, trochanter), left; Jaw, left; Upper back
• Shoulder girdle, right; Hip (buttock, trochanter), right; Jaw, right; Lower back
• Upper arm, left; Upper leg, left; Chest; Neck
• Upper arm, right; Upper leg, right; Abdomen
• Lower arm, left; Lower leg, left
• Lower arm, right; Lower leg, right

2) SS scale score:

• Fatigue
• Waking unrefreshed
• Cognitive symptoms

For the each of the 3 symptoms above, indicate the level of severity over the past week using the following scale:

0 = no problem
1 = slight or mild problems, generally mild or intermittent
2 = moderate, considerable problems, often present and/or at a moderate level
3 = severe: pervasive, continuous, life-disturbing problems

Considering somatic symptoms in general, indicate whether the patient has:*
0 = no symptoms
1 = few symptoms
2 = a moderate number of symptoms
3 = a great deal of symptoms

The SS scale score is the sum of the severity of the 3 symptoms (fatigue, waking unrefreshed, cognitive symptoms) plus the extent (severity) of somatic symptoms in general. The final score is between 0 and 12.

Because a patient’s symptoms may vary and may come and go, a person may not meet the criteria at the time they are initially tested. Doctors generally consider the results of this evaluation in conjunction with other findings.

Laboratory tests
Laboratory tests can be useful to help diagnose conditions with symptoms similar to fibromyalgia and to identify disorders that may be coexisting with fibromyalgia, such as rheumatoid arthritis, Sjögren’s syndrome, thyroid disease, and lupus. It is not usually cost effective or necessary to do extensive screening. General tests that may be ordered include:

• E/LFT's – to examine electrolytes, proteins, liver and kidney function, calcium, and glucose
• FBC (full blood count) – to look for anaemia, white and red blood cell abnormalities
• TSH (thyroid stimulating hormone) and/or other thyroid testing as hypothyroidism can cause symptoms similar to fibromyalgia
• ANA (anti-nuclear antibody) - to help rule out autoimmune disorders if features are present.
• CK (creatine kinase) - to rule out other conditions that can cause muscle weakness or pain.

Other specific tests may be ordered to rule out diseases that mimic fibromyalgia based on the patient's symptoms and on the findings of these general screening tests. It should be noted that any abnormal laboratory test results are usually due to something other than fibromyalgia.

Some very specialised laboratory tests, such as the measurement of Substance P (a neurochemical that signals the brain to register pain), may be used in a research setting to attempt to better understand the cause and course of fibromyalgia, but they are not considered clinically useful at this time.

Non-laboratory tests
Occasionally, an imaging scan may be ordered to help rule out a disorder that is causing symptoms similar to fibromyalgia, such as an MRI (magnetic resonance imaging) to help identify multiple sclerosis.

Treatment

Currently, there is no cure for fibromyalgia. Few people achieve complete remission of their symptoms, but most learn to live with their condition and are able to live relatively normal lives. Fibromyalgia is not inherently crippling, and it does not decrease the lifespan of those affected by it. Treatment centres on lifestyle changes and symptom relief. Support groups and counselling may help a patient deal with the physical, psychological, financial, and social frustrations their condition can cause.

A gentle exercise program is strongly recommended, as it is one of the few measures shown to be of benefit. Regular aerobic exercise and stretching can help maintain muscle conditioning, improve sleep, and decrease pain and stiffness. Caution should be used, especially when starting to exercise, as overexertion can cause painful flare-ups. Stress reduction and limiting caffeine and alcohol also may help to reduce symptoms.

Drug therapies may be able to offer at least short-term symptom improvement, including decreased pain and increased quality of sleep. Tricyclic antidepressants have proven useful for some patients, not because of depression but because of the way the treatment affects brain chemistry. The first U.S. Food and Drug Administration approved treatment, as of June 2007, is the drug pregabalin, an anticonvulsant. Patients with fibromyalgia should work with their doctors to determine the best course of treatment for them. What works for one person may not work for another, and many people with fibromyalgia are especially sensitive to medication side-effects.

Pregabalin is available in Australia, but is not funded on the PBS as yet for this indication. Many medications used in the treatment of fibromyalgia lead to excess sedation.

Patients with fibromyalgia should work with their doctors to determine the best course of treatment for them. What works for one person may not work for another, and many people with fibromyalgia are especially sensitive to medication side-effects.

More information

Healthdirect Australia: fibromyalgia