Pediatric Fibromyalgia and Musculoskeletal Pain

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
• widespread pain — 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
• fatigue and 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. 

What are the symptoms of fibromyalgia?

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:

• 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 always be sure to consult your child’s physician for a diagnosis.

What causes 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 psychologically stressful events
• traumatic injuries
• infections or other illnesses

Can fibromyalgia be prevented?

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.

What are the complications of 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.

Long-term outlook

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.

FAQs

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.

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.

How do we diagnose fibromyalgia?

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 — in order 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 fact, the ACR has proposed replacing the tender point test with criteria that are based more on symptoms.)

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.

How do we treat fibromyalgia?

The good news about fibromyalgia is that it's not harming your child's body. Treatment, therefore, isn't about “healing” your child, but rather successfully controlling the symptoms of fibromyalgia so he can get on with his life.

If your child has mild symptoms, he may need very little treatment once he understands what fibromyalgia is and how to avoid things that make his symptoms worse. If his symptoms are more severe, however, he 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 actually 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.

How Boston Children’s Hospital approaches fibromyalgia

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.

We understand that you may have a lot of questions when your child is diagnosed with a chronic condition like fibromyalgia. How will it affect my child's life? What do we do next? We've tried to provide some answers to those questions here, along with the reassurance that many children with fibromyalgia will see their symptoms diminish or disappear with proper treatment. But for those children and families who need additional support in dealing with fibromyalgia, Boston Children's Hospital also offers a number of resources, including:

• Parent-to-parent connections: Want to talk with someone whose son or daughter has been treated for fibromyalgia? A number of Boston Children's parents volunteer for special training to help the families of newly diagnosed kids. Alternatively, your child's doctor may be able to put you in touch with a mom or dad of another patient who can share their experiences with you.

• Social work: Our Rheumatology Program includes social workers — in both inpatient and outpatient settings -- who have assisted other families whose children have fibromyalgia. Your social worker can offer counseling and problem-solving advice on issues such as coping with your child's diagnosis; dealing with financial difficulties; and finding temporary housing near the hospital if your family is traveling to Boston from another area.

• Coping Clinic: This program has an experienced team of pediatric psychologists, psychiatrists, and other mental health professionals to help children and families deal with any extra stress that a long-term health problem can bring. Offering evaluations, short-term therapy, and family counseling, the Coping Clinic staff can teach you ways to prevent or better deal with the challenges of fibromyalgia.

In addition, there are many groups that help connect and educate people across the country who have fibromyalgia.

Your doctor may be able to recommend some to you, but a good place to start is the National Fibromyalgia Association, a nonprofit devoted to supporting people with fibromyalgia and raising awareness of the condition. NFA offers a variety of public and member-only resources, including lists of local fibromyalgia support groups, an online discussion forum for patients, and a quarterly magazine, Fibromyalgia Aware.

There are many ways in which your child might benefit from Boston Children’s medical research program. 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.

/clinical-trialsIt’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.

To search current and upcoming clinical trials at Boston Children’s, go to:

https://www.childrenshospital.org/clinical-trials

To search the NIH’s list of clinical trials taking place around the world, go to:

http://www.clinicaltrials.gov/ct2/search