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For many decades, people who complained of widespread chronic pain were believed to have inflammation in their muscles, dubbed fibrositis (“itis” means inflammation). Then in the 1970s, as doctors came to better understand this condition, the name fibromyalgia appeared: fibro for fibrous tissues, my for muscles and algia for pain.
The new name underscored the belief that, unlike arthritis, the pain of fibromyalgia doesn’t stem from inflammation, an immune system response that causes swelling, stiffness and pain -- and which, if unchecked, can permanently damage tissues.
Instead, many believe fibromyalgia is rooted in the nervous system: the brain, the spinal cord and a vast network of special cells called neurons. The nervous system sends, receives and interprets information -- including pain -- from all parts of the body. In the case of fibromyalgia, it’s as though the “volume control” is turned up too high in the parts of the nervous system that perceive and react to pain.
There are still many unanswered questions about fibromyalgia -- including what exactly causes it -- and diagnosing this condition remains a challenge. Children with fibromyalgia may look perfectly healthy and lab tests may show no signs of illness. Little wonder, then, that some in the medical community are skeptical that fibromyalgia even exists!
Most doctors, however, have come to recognize this condition as being a very real problem, and one described by the following:
In addition, fibromyalgia has traditionally shown up in adulthood. But it’s being diagnosed with growing frequency in children and teens -- likely because doctors are becoming ever more aware of this condition and how to diagnose it.
There are still many questions about the exact cause of fibromyalgia, so we may not yet have a full picture of the risk factors for this chronic condition. But in general, the things that increase the likelihood that someone will develop fibromyalgia are:
Physical or psychological stress, poor sleeping habits and lack of physical exercise have also been linked to a higher risk for fibromyalgia.
We don’t know exactly what causes fibromyalgia. While it’s very likely that certain genes make people more susceptible to fibromyalgia (what doctors call “genetic predisposition”), most researchers believe one or more things must also happen in order for the condition to emerge. These possible triggers include:
Fibromyalgia is never the same from one child to the next. Symptoms may be mild or severe, affect different parts of the body and vary over time. But the main thing that virtually all fibromyalgia sufferers have in common is chronic pain.
Aside from chronic pain, two of the most common symptoms of fibromyalgia are:
Other symptoms may include:
Symptoms of fibromyalgia are easily confused with those of other ailments -- such as lupus, arthritis and Lyme disease -- so always be sure to consult your child’s physician for a diagnosis.
As a parent, you may fret about whether you could have prevented your child’s fibromyalgia, or look for ways to make sure it doesn’t develop in any of your other children. But since the causes of this condition are still not fully understood, there’s no known way to stop it from happening.
However, you can take steps to prevent fibromyalgia from decreasing your child’s quality of life. Aside from whatever medical therapy he may need, helping your child establish good-health habits -- a well-balanced diet, regular exercise, etc. -- can reduce pain, increase sleep quality, lessen fatigue and aid your child in coping with fibromyalgia.
Because fibromyalgia doesn’t actually harm your child’s body, there is little risk it will lead to any physical health problems. Instead, its potential complications tend to be psychosocial -- that is, fibromyalgia may affect the way your child thinks, feels and interacts with others.
Dealing with chronic pain can be tough on kids, especially since other people may perceive them as being perfectly healthy. It’s not unusual for children with fibromyalgia to feel depressed or anxious. They may find it hard to function at school, and therefore just stay home when they’re not feeling well.
Not every child will have these kinds of psychosocial complications, of course. But for those who do, appropriate treatment may include counseling and cognitive-behavioral therapy, which helps people recognize thought patterns and emotional responses that contribute to their symptoms, and gives them practical ways to change their behavior.
Although fibromyalgia is a lifelong condition, it tends not to worsen (or “progress”) over time. In fact, it can get better -- especially with early diagnosis and aggressive treatment. And children are more likely than adults to respond to treatment: When given appropriate therapy, up to 80 percent of youngsters may see a significant or complete recovery from their symptoms.
Q: Why did my child get fibromyalgia?
A: We don’t know exactly why some children have this condition while others do not, but many researchers think it may be due to a combination of genetic and environmental factors. It’s important to remember that your child’s fibromyalgia wasn’t caused by anything you did, and there’s nothing you could have done to prevent it.
Q: Are my other children at risk for fibromyalgia? Should they be tested?
A: Fibromyalgia does tend to run in families, and studies indicate that if one child has this condition, there is an increased risk that one or more of his siblings will also have it. However, there’s no test that can show whether someone has or will develop fibromyalgia.
Q: What’s the difference between fibromyalgia and chronic fatigue syndrome?
A: The two conditions share many of the same symptoms, and it can be hard to tell them apart. A key difference, when it comes to diagnosis, is which symptom is worst: pain (fibromyalgia) or fatigue (CFS).
Q: What does fibromyalgia pain feel like?
A: Although many patients say, “I hurt all over,” the location and intensity of the pain varies a lot from person to person. It’s often described as a dull ache in the muscles of the arms, legs, back and neck, though not necessarily all places at once. Some patients complain of “burning,” “throbbing” or “shooting” pain, or feel that their pain radiates outward from specific parts of the body.
Q: Is fibromyalgia ever life-threatening?
A: Though painful, fibromyalgia doesn’t actually cause physical harm to the body’s tissues and organs. Not only is this condition not fatal, but there’s also no evidence that it will have any effect on your child’s lifespan.
Q: Will my child’s fibromyalgia get better with time?
A: While fibromyalgia is a lifelong condition, for many people -- especially children -- the symptoms do ease or even go away over time. Sometimes this happens spontaneously, but most often it’s a result of proper treatment and lifestyle changes.
Q: Will my child need to be on a special diet?
A: There isn’t any evidence that eating specific foods or taking special supplements will make your child’s fibromyalgia better. But you can support your child’s overall good health by making sure he eats a balanced, “heart-healthy” diet: plenty of fruits and vegetables, whole grains, low-fat dairy products and lean sources of protein. It’s also important to avoid things that can interfere with restful sleep, like sodas that contain caffeine.
If your child has fatigue and “all-over” aches that don’t get better with ibuprofen or other over-the-counter pain relievers, you should make an appointment with your child’s pediatrician. If the doctor suspects fibromyalgia, he or she may then refer you to a pediatric rheumatologist.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”