Pediatric Fibromyalgia and Musculoskeletal Pain

We may not like it, but we need pain: It acts as an early warning system that something is causing or may cause damage to the body. If your child has a chronic condition known as fibromyalgia, the pain alarm is continually being set off by things that feel painless to most people — getting a friendly pat on the back, for instance, or sitting in a chair for a few hours.

Hearing your child complain of “hurting all over” can be upsetting, especially given that fibromyalgia isn’t a disease but a condition that may last for years, even a lifetime. There isn’t a “cure.” However, fibromyalgia doesn’t actually damage the body the way arthritis does. And with education, treatment, and lifestyle changes, the majority of children with fibromyalgia can bring their condition under control and lead a full, relatively normal life.

• Fibromyalgia is found in about 2 to 4 percent of the U.S. population.
• Although fibromyalgia primarily affects women ages 20 to 60, doctors are increasingly seeing it in pediatric patients as well, usually around early adolescence (11 to 15).
• Fibromyalgia is a chronic — meaning long-lasting — disorder that causes widespread pain and stiffness in the tissues that support and move the bones and joints.
• Many people with fibromyalgia also have severe fatigue and trouble sleeping.

Treatment for fibromyalgia aims to control symptoms through things like exercise, relaxation techniques, and, in some cases, medication.

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. 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.

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:

• Headaches
• Morning stiffness
• Abdominal pain
• Depression
• Anxiety
• 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 be sure to consult your child’s physician for a diagnosis.

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 psychologically stressful events
• Traumatic injuries
• Infections or other illnesses

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.

There is no foolproof test for fibromyalgia, which can be frustrating when you want to know so badly what is causing your child’s pain. A further challenge is that fibromyalgia can easily be confused with or misdiagnosed as illnesses such as lupus and arthritis. This is why you and your child will likely visit a specialist — specifically, a pediatric rheumatologist — to get a diagnosis.

In 1990 the American College of Rheumatology (ACR) established two criteria for diagnosing fibromyalgia in adults:

• Widespread pain that lasts for three months or more
• Moderate pain and tenderness in 11 of 18 specific “tender points” found in the neck, shoulder, chest, hip, knee, and elbow regions

However, most children (and some adults) feel pain in fewer than 11 tender points, which is why pediatric rheumatologists also carefully consider the type and severity of their patients’ symptoms in making a diagnosis of fibromyalgia.

In addition to reviewing your child’s medical history and conducting a thorough physical exam, your child’s doctor may order certain blood tests to rule out other illnesses. These include:

• Complete blood count (CBC)
• Erythrocyte sedimentation rate (sed rate)
• Tests for certain antibodies
• Thyroid and liver function tests

Less frequently, a sleep electoencephalogram (sleep EEG) may be used to see if a child has sleep problems, which are often a sign of fibromyalgia.

Treatment is about successfully controlling the symptoms of fibromyalgia so your child can get on with their life.

If your child has mild symptoms, they may need very little treatment once they understands what fibromyalgia is and how to avoid things that make their symptoms worse. If symptoms are more severe, however, they may require a comprehensive care program that includes things like a physical therapy regimen and stress reduction techniques. Only a small percentage of children will need medication.

Your child's doctor will tailor a treatment plan to meet your child's needs, including some or all of the following:

• Education: The first and often the most important step is for you and your child learn what fibromyalgia is and how best to manage it in day-to-day life.
• Exercise: Low-impact activities like swimming and yoga have been shown to reduce pain and improve mood, as well as boost overall good health. Your child's exercise program may be part of physical therapy, which also encompasses such things as stretching techniques and applying hot or cold packs for pain relief.
• Relaxation techniques: Learning to reduce stress through things like meditation and biofeedback can help cut down on aches and pains — and may also ease sleep problems, depression, and anxiety.
• Complementary therapies: Some children with fibromyalgia may also get relief from therapies that fall outside the realm of conventional medicine, such as acupuncture, acupressure, and massage.
• Cognitive-behavioral therapy: This teaches ways to cope with pain on a psychological level, and also to identify the stressful triggers that make pain worse.
• Medications: Typically the last resort in treating fibromyalgia, these may include:
  • Analgesics, or painkillers, like acetaminophen (Tylenol) and tramadol (Ultram)
  • Antidepressants, to improve sleep and reduce pain and anxiety, like duloxetine (Cymbalta) and fluoxetine (Prozac)
  • Muscle relaxants, such as cyclobenzaprine (Flexeril and others)
  • Anti-seizure drugs, namely gabapentin (Neurontin) and pregabalin (Lyrica), which are relatively new therapies for fibromyalgia. They've been shown to ease muscle tension and improve sleep in adult fibromyalgia patients; however, it remains to be seen how effective they are for children.

The doctors who treat fibromyalgia are specialists in caring for the muscles, joints and connective tissues, called rheumatologists. Boston Children’s has one of the largest pediatric rheumatology programs in the U.S., seeing more than 4,000 outpatients and almost 1,000 inpatients every year — which gives our physicians broad experience with fibromyalgia and related illnesses.

Our rheumatologists also work closely together with other Boston Children’s specialists to care for your child. This teamwork is vital in fibromyalgia, because the treatment plan often involves pain specialists, sleep specialists, physical therapists, and practitioners of complementary medicine, like acupuncture.

Finally, Boston Children’s is always looking for ways to better diagnose and treat fibromyalgia, as well as learn more about how this chronic condition works. For example, our researchers are working to develop biomarkers — things in the body, like certain protein levels, that help identify or track an ailment — for fibromyalgia. Such a biomarker could potentially be used to diagnose fibromyalgia in children and monitor how well they’re responding to treatment.

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.

Boston Children’s doctors and scientists have made many breakthrough discoveries about diseases like polio and leukemia; our ongoing innovative research continues to push the boundaries of the way pediatric medicine is practiced.

It’s possible that your child will be eligible to participate in one of our current clinical trials. These studies are useful for a multitude of reasons: Some trials are designed to evaluate the effectiveness of a particular drug, treatment or therapy on a specific disease; others help doctors to better understand how and why certain conditions occur. At any given time, Children’s has hundreds of clinical trials under way.

Of course, your motives as a parent needn’t be entirely altruistic — you’ll naturally want to know how taking part in a trial can immediately benefit your child. If your child’s physician recommends participation in one of Children’s clinical trials, that likely means that your child’s physician believes that the plan outlined in that trial represents the absolute best, latest care your child can possibly receive.

And participation in any clinical trial is completely voluntary: We will take care to fully explain all elements of the treatment plan prior to the start of the trial, and you may remove your child from the medical study at any time.