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 one of the most common chronic pain conditions in America, affecting an estimated 5 million people and often running in families. 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 and generally consists of a combination of medications 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 occurs on both sides of the body, above and below the waist; it can range from mild to severe.
Usually, someone with fibromyalgia will also have 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 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:
- gastrointestinal problems like irritable bowel syndrome
- problems with memory or concentration
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 perceive pain differently. For some reason, they experience pain in response to stimuli that aren’t normally perceived as painful by others.
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 diagnos 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 many doctors are still undereducated about the subject.
Doctors make a diagnosis of fibromyalgia in a child based on the child’s medical history, his or her description of symptoms, and a check of 18 usual tender spots. Most kids with fibromyalgia will experience 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. If there is no tissue swelling and conditions with similar symptoms can be ruled out, fibromyalgia might be determined to be the cause.
Fibromyalgia can’t be cured, but treatment can help manage symptoms, minimize pain, and improve a child’s overall health and quality of life. Treatments for fibromyalgia include both lifestyle changes and medications.
Before trying medications, most doctors will want to start with home remedies for a child, such as:
- Regular exercise. This may increase pain at first, but exercise can help ease symptoms when done gradually and regularly. Some kids benefit from working with a physical therapist. Others can show improvement from stretching and relaxation exercises.
- Stress-relief methods. This can include yoga, t’ai chi, and other disciplines, as well as light massage, breathing exercises, and acupuncture.
- Proper sleep. Getting enough sleep is one of the most effective ways to treat fibromyalgia, so children with fibromyalgia should be encouraged to avoid caffeine and sugary beverages and snacks right before bedtime. They also should go to bed and get up at the same time each day and limit napping during the daytime.
- Healthy lifestyle choices. This includes eating a healthy diet and finding activities that help distract from the symptoms of fibromyalgia.
Some kids also find that changing the way they think about their condition helps improve their symptoms. Cognitive-behavioral therapy (CBT), a therapy administered by mental health professional, can be successful in helping 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:
- Pain relievers. Over-the-counter medications, such as acetaminophen, ibuprofen, and naproxen sodium, can help ease the pain and stiffness caused by fibromyalgia. Doctors also may use prescription pain relievers, such as tramadol.
- Antidepressants. A number of prescription antidepressants are used to ease pain and fatigue and help promote better sleep.
- Anti-seizure medications. A handful of drugs used to treat epilepsy are also useful in treating fibromyalgia symptoms.
- Sleeping aids. These allow a child to get a better night’s sleep, which can relieve many of fibromyalgia’s symptoms.
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 networks of their peers, 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: Elana Pearl Ben-Joseph, MD
Date reviewed: September 2012