There's a lot of disagreement among doctors when it comes to fibromyalgia. Theories differ as to what causes it and how best to treat it. There's even disagreement about what to call it — some call it a syndrome, others a disorder, still others a chronic condition.
Whatever you label it, and whatever its origins, fibromyalgia presents a very real challenge to those coping with its symptoms each day.
Fibromyalgia is a common chronic pain condition — it affects millions of people in the United States. It's far more common in females than males and can start when kids are in their teen years or even younger, although it's most common in women between the ages of 20 and 50.
Fibromyalgia (fy-bro-my-AL-ja) is a long-term, or chronic, syndrome that causes widespread pain in the muscles, joints, and other soft tissues of the body. The term "fibromyalgia" comes from the Latin word "fibro" for fibrous tissue, and the Greek "myo" for muscle, and "algos" meaning pain. In kids, it is sometimes referred to as juvenile primary fibromyalgia syndrome.
The pain of fibromyalgia is often accompanied by isolated tender or sore areas, fatigue, poor sleep, headaches, and other symptoms. Fibromyalgia is often considered a syndrome rather than a disease because it's a collection of symptoms that seem to be related but, unlike a disease, there's no cause that can be identified.
Although fibromyalgia is a chronic condition, its symptoms typically come and go. They can be mild at times, then so severe at others that they interfere with normal activities. Many kids with fibromyalgia can attend school regularly, but their abilities vary depending upon the severity of their symptoms.
Treatment for fibromyalgia focuses on managing the pain and other symptoms. This often involves a combination of medicines and lifestyle changes, such as exercise, relaxation, and stress-management techniques. There is no cure for fibromyalgia, but treatment has been shown to improve the quality of life for those who have it.
Most kids with fibromyalgia complain of widespread muscle pain, usually a dull or burning kind, but sometimes more of a shooting or throbbing pain. Widespread means the pain happens on both sides of the body, above and below the waist; it can range from mild to severe.
Usually, someone with fibromyalgia also has a number of tender spots — places where he or she feels pain if the spot is pressed. Common tender spots include the back of the head, between the shoulder blades, shoulders, chest, neck, hips, knees, and elbows.
Fatigue (tiredness) is another common complaint of kids with fibromyalgia. Because of this, fibromyalgia can mimic the symptoms of a similar condition called chronic fatigue syndrome. Sometimes, a person can have both conditions, but they are separate syndromes.
Fibromyalgia also usually causes sleeping problems that make getting a good night's sleep difficult. Some kids may have other sleep disorders like restless legs syndrome and sleep apnea. Poor sleep can also lead to waking up with body aches and stiffness that may improve during the day, then get worse at night.
Additional symptoms of fibromyalgia can include:
People with fibromyalgia often notice a variety of external factors that can make their symptoms worse, from emotional stress to cold, damp weather.
Doctors aren't really sure what causes fibromyalgia, but most agree that the brains of people who have it sense pain differently. They might feel pain in response to things (like stress) that aren't normally painful.
Some cases of fibromyalgia seem to be triggered by an event — like an infection or illness, physical injury, or emotional upset. Genetic factors also might play a role. Fibromyalgia tends to run in families, so it's possible that having a genetic mutation may increase someone's risk of developing the condition.
If your child seems to be suffering from one or more of fibromyalgia's major symptoms — such as chronic muscle pain, fatigue, or disrupted sleep — contact a doctor. While there's no specific test to diagnose fibromyalgia, a doctor can run tests to rule out other possible causes, such as thyroid disorders, infectious diseases, or rheumatic diseases (like juvenile idiopathic arthritis).
Since fibromyalgia can't be confirmed by any laboratory tests and has few, if any, visible signs, it can be difficult for doctors to diagnose the condition. This can be frustrating for someone who has it. Some estimates claim that it takes an average of 5 years for someone with fibromyalgia to get an accurate diagnosis, and some doctors are not as familiar with the condition as others.
Doctors diagnose fibromyalgia in someone based on medical history, the person's description of symptoms, and a physical exam, including a check of 18 usual tender spots. Most kids with fibromyalgia will have pain when pressure is applied to at least five of the tender spots, and will have widespread musculoskeletal aches lasting for at least 3 months, with no other medical problem causing the pain.
There's no cure for fibromyalgia, but treatment can help manage symptoms, ease pain, and improve a child's overall health and quality of life. Treatments for fibromyalgia include both lifestyle changes, behavioral therapy, and medicines.
Before giving medicines, doctors usually will try other treatments, such as:
Some kids also find that changing the way they think about their condition helps improve their symptoms. Cognitive-behavioral therapy (CBT), a therapy used by mental health professionals, can help kids learn to filter out negative thoughts, recognize what makes symptoms worse, and set limits to keep symptoms in check.
If these steps aren't enough to manage fibromyalgia symptoms, the doctor may prescribe medications. Some of the more common ones prescribed to treat fibromyalgia are:
In addition to helping your child manage the symptoms of fibromyalgia, it's also important to provide the necessary emotional support. Talking about the condition and coming up with coping strategies together can help.
Many young people also find that support groups, as well as counseling from a trained psychologist, can help them learn to manage their symptoms, feel better, and have a more positive outlook on life.
Reviewed by: Larissa Hirsch, MD
Date reviewed: October 2015
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