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:
- chronic(long-lasting) pain, present for at least three months before diagnosis
- widespreadpain -- that is, occurring above and below the waist and on both sides of the body
- tenderness when pressure is applied to specific “tender points”on the body
- fatigueand sleep disturbances
- symptoms that wax and wane over time
- tendency to appear with other health problems, including
- chronic fatigue syndrome
- myofascial pain syndrome (MPS)
- irritable bowel syndrome
- restless leg syndrome
- migraine headaches
temporomandibular joint disorder (TMJ)
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.
Who is at risk?
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:
- Gender:An estimated nine out of 10 fibromyalgia patients are female.
- Age: Fibromyalgia usually develops in early adulthood or middle age (20-60), with some studies pointing to a peak around age 35. When fibromyalgia occurs in children, it tends to begin between 11 and 15; it rarely occurs in children younger than 4.
- Family history:Relatives of people with fibromyalgia or similar pain disorders (e.g., myofascial pain syndrome) are at higher risk for fibromyalgia. For instance, one study found that about a third of children whose mothers have fibromyalgia also develop the disorder.
Other illnesses:Research suggests that up to 25 percent of people with certain autoimmune diseases -- lupus, some forms of arthritis -- also develop fibromyalgia.
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:
- emotionally or psychologicallystressful events
- traumatic injuries
- infections or other illnesses
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.
- The pain may begin in one area, such as the neck and shoulders, but eventually affects the entire body (above and below the waist, and on both sides).
- It may be centered in specific tissues, such as muscles and ligaments, or be more widespread.
- The sensation can range from a dull ache to stabbing pain, and may be accompanied by tingling or numbness.
There is also pain when pressure is applied to certain parts of the body (called “tender points”).
Aside from chronic pain, two of the most common symptoms of fibromyalgia are:
- fatigue-- lingering exhaustion; tiring quickly after even light exercise
sleep disturbances -- trouble sleeping through the night; waking up in the morning feeling tired and unrefreshed
Other symptoms may include:
- morning stiffness
- abdominal pain
- numbness in the hands and feet
- painful menstrual periods
- sensitivity to cold or heat
memory or concentration problems (sometimes called “fibro fog”)
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.
When to seek medical advice
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.
Questions to ask your doctor
You and your family are key players in your child’s medical care. It’s important that you share your observations and ideas with your child’s health care provider, and that you understand your provider’s recommendations.
If you’ve made an appointment to talk to a rheumatologist about your child’s fibromyalgia, you probably already have some ideas and questions on your mind. But at the appointment, it can be easy to forget the questions you wanted to ask. It’s often helpful to jot them down ahead of time so that you can leave the appointment feeling that you have the information you need.
If your child is old enough, you may want to suggest that he write down what he wants to ask his health care provider, too.
Some of the questions you may want to ask include:
- How much experience do you have treating fibromyalgia?
- How severe is my child’s fibromyalgia?
- What are the treatment options? What are their side effects?
- How will we know whether the treatment is working?
- Does my child have symptoms of health problems besides fibromyalgia?
- What other specialists may be involved in treating my child?
- How will fibromyalgia affect my child’s day-to-day life?
- What’s the best way to explain this condition to my child’s friends and family?
What can I do to help support my child’s health and help him cope with his condition?
Useful medical terms
Allodynia: Pain caused by something that is not normally painful, such as a light touch on the skin.
Analgesic:A medication or treatment that relieves pain.
Chronic: Lasting a long time; persisting or recurrent.
Connective tissue:The supporting framework of the body and its internal organs.
Fibro fog: A term often used to describe the confusion and memory problems that sometimes accompany fibromyalgia.
Fibrositis: A former name for fibromyalgia.
Flare: A sudden worsening of symptoms.
Myalgia: Pain in the muscles.
Remission: When symptoms of a disease decrease or disappear.
Syndrome: A specific collection of symptoms that are thought to have a common cause.
Tender points: Specific places on the body where a person with fibromyalgia feels pain in response to pressure.