Adults only ? No, say the experts!

Excerpted from Fibromyalgia: A Comprehensive Approach by Miryam Williamson Copyright 1996. Permission is granted to download, print, copy, and distribute, but not to sell. Support group leaders: I don't consider accepting donations to cover copying costs to be the same as selling.

Until recently, fibromyalgia was considered an adult disorder; children were thought not to get it. Then, in a study published in the Journal of Rheumatology in 1993, a team of doctors in Israel reported that 6.2 percent of 338 healthy schoolchildren between the ages of nine and 15 met the criteria for the fibromyalgia syndrome. At nearly the same time, a rheumatologist in the US asserted that 45% of the children referred to him had FM. Of these 15 children, nine had been diagnosed incorrectly with juvenile chronic arthritis, three had been told they had growing pains, and two had been given a psychiatric diagnosis. Since then, doctors have been paying more attention to children's complaints of pain and are diagnosing FM with increasing frequency. [...]

Children's complaints of pain must be taken seriously, lest they grow up with untreated FM. Growing pains are a particularly pernicious myth. It should not hurt to grow, and the child whose pain is brushed off that way is a very unfortunate little person. FM is often a family affair [...]That is not to say that your children are sure to have FM if you do, but I hope it will motivate you to be extra vigilant. Children need us to take their complaints of pain seriously. Fibromyalgia can make a child's life miserable at school and on the playground. The child with FM needs a great deal of special help and understanding.

Many adults think of childhood as a carefree time, full of fun and excitement. Some find it hard to comprehend the depth to which children can feel pain, both emotional and physical. Small children want nothing so much as to please the adults around them, and to gain their respect and affection. If parents place a high value on stoicism, then their child will believe that the way to gain approval is to grin and bear it, and is likely to miss badly needed medical attention.

Detecting FM in Children

FM in children often starts with a flu-like illness from which the child seems never to have fully recovered. Sometimes, particularly in children before puberty, the ailment simply comes on gradually, without any obvious precipitating event. Very young children may not remember a time without pain, and thus may not complain at all. [...]

You should suspect fibromyalgia in a child who sleeps restlessly, kicks or twitches during sleep, and has a difficult time getting out of bed in the morning. [...] Insomnia coupled with pains or aches is a trouble signal and should not be ignored, particularly if one of the child's parents has FM.. Sometimes an alert teacher is the first to notice a problem. [...]Children with fibromyalgia often have trouble in school. A considerable amount of schoolwork requires memorization. The cognitive difficulties that often accompany FM may make this difficult, if not impossible.

FM for me as a child consisted of intermittent severe diarrhea, difficulty controlling my bladder, shooting pains in my legs, deep aches in my calf muscles that felt as though my marrow was burning, frequent severe headaches, lack of stamina, and insomnia. Some of my earliest school memories are of teachers joining in with my classmates to taunt me because I wasn't always sure where my feet were. Needless to say, I was never the first chosen for any team game. [...]

Children who squirm and fidget in class may be trying to keep themselves from falling asleep. They may also find it painful to sit in one place for long periods of time. Some symptoms of FM may manifest themselves in the classroom as Attention Deficit Disorder (ADD). Not all children with ADD are hyperactive, as was once thought. There is a form known as "quiet-ADD." Some pediatricians say this may be an early symptom of fibromyalgia in some children. A sharp pediatrician can tell the difference between ADD and FM by performing a tender point examination.

[...]Another characteristic of children with fibromyalgia is that many of them have hypermobile joints — that is, they are "double-jointed." [...] Being double-jointed is not a sure sign of FM, but it should make a parent suspicious.

All parents, particularly those with FM, should see to it that their children are examined for fibromyalgia as soon as they are old enough to say if they feel pain during a tender point examination. Early intervention is important; proper treatment may save the child from a lifetime of suffering.

Tips for dealing with FM in children

Some doctors put children with FM on a very small dose of a tricyclic agent or muscle relaxant. Others prescribe Benadryl at bedtime for sleep. A child who learns good nutritional habits early in life, grows accustomed to going to bed at the same time every night, and is encouraged to take part in a suitable exercise program will be well equipped to avoid FM flareups throughout life.

If your child is diagnosed with FM, you will need to do some explaining. What you say and how you say it will have a profound effect on the child's reaction. Children are particularly vulnerable to thinking that anything that goes wrong is their fault. You must stress that FM is nobody's fault and that nothing anyone could have done would have prevented it. How much you explain about fibromyalgia will depend, of course, on the child's age and intellectual development. Above all, the child must understand that FM can be controlled. [...]

Raising a child who has fibromyalgia is a real challenge. You will need to remember that some days are worse than others, and allow the child to set the pace. Household chores should be adjusted to fit the situation, and flexibility should be the overriding principle. Teachers and school administrators should be informed about your child's FM. They must understand that the child can feel well one day and terribly the next, and that people with fibromyalgia almost always look better than they feel.

Any condition that interferes with a child's learning ability entitles the child to a special needs assessment and education plan, according to US Public Law 94-142, which provides for the education of children with special needs. If your child is having trouble with schoolwork, you may have to be persistent in getting the school to agree to this assessment, but it is your right and you will eventually prevail if you keep at it. Among the accommodations that have been granted to children with FM are two sets of school books so that the child need not carry books to and from school; a tape recorder to eliminate the need to take notes; and a flexible class schedule that allows the child to take her most difficult classes at the time of day when she is feeling her best.

If your child's classmates are making his or her life miserable with teasing, a word with the teacher is in order. Children generally take their behavior cues from their teachers. If the teacher makes an offhand remark about the FM child's clumsiness, or chides the child for being lazy when fatigue strikes, the teacher's attitude will surely lead to teasing by the other children. It is up to you to cultivate the kind of relationship in which your child can confide in you about such problems. An appointment with the school's guidance counselor can often set things right. Proper treatment can make a world of difference. [...]

There is evidence that fibromyalgia in children may not be a lifetime sentence. One study found that 30 months after diagnosis, 11 of 15 children with FM (73%) were no longer fibromyalgic. "We suggest that the outcome of FM in children is more favorable than in adults," the doctors who conducted the study wrote. Guaifenesen has been found to bring some children to a pain-free state, according to their parents. Early intervention seems to be the key in children with fibromyalgia.

Copyright ©1997, Miryam Ehrlich Williamson

Symptoms and General Overview

Overview

Fibromyalgia is a chronic musculoskeletal syndrome characterized by pain, achiness, tenderness, and stiffness in the muscle tissue, ligaments, and tendons. It most frequently affects the neck, shoulders, chest, legs, and lower back. Pain is generally accompanied by sleep disorders, fatigue, gastrointestinal disorders, and depression. Many of its symptoms are similar to those of chronic fatigue syndrome, myofascial pain syndrome, and temporomandibular joint syndrome (TMJ).

Incidence and Prevalence
It is estimated that 6 to 8 million people in the United States suffer from fibromyalgia. About 80% of patients are women. While fibromyalgia can occur at any age, the highest incidence occurs among women 20 to 40 years of age.

There have been reports of fibromyalgia in children. What may be considered “growing pains” might in fact be fibromyalgia, especially if the child complains of having difficulty sleeping.

Risk Factors

Risk factors for fibromyalgia include the following:

Age (more common in young adults)
Gender (more common in women than men)
Genetic (familial patterns suggest the disorder may be inherited)
Sleep disorders (whether sleep difficulties are a cause or a result of fibromyalgia is unknown)
Causes
Causes of fibromyalgia are not known. The condition produces vague symptoms that may be associated with diminished blood flow to certain parts of the brain and increased amounts of substance P, which is thought to be a sensory neurotransmitter involved in the communication of pain, touch, and temperature from the body to the brain.

Researchers have identified several other possible causes, including the following:
Autonomic nervous system dysfunction
Chronic sleep disorders
Emotional stress or trauma
Immune or endocrine system dysfunction
Upper spinal cord injury
Viral or bacterial infection
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Signs and Symptoms

While the symptoms of fibromyalgia can be debilitating, they are not life threatening. Symptoms vary, depending on stress level, physical activity, time of day, and the weather. Pain is the primary symptom, found in virtually 100% of cases— specifically, pain and tenderness in certain areas of the body when pressure is applied to them.

These areas include:
Back of the head
Elbows
Hips
Knees
Neck
Upper back
Upper chest

Pain may be aching, burning, throbbing, or move around the body (migratory). Many patients also experience muscle tightness, soreness, and spasms. The patient may be unable to carry out normal daily activities, even though muscle strength is not affected. The pain is often worse in the morning, improves throughout the day, and worsens at night.

Fibromyalgia is a chronic condition and symptoms may be constant or intermittent for years or even a lifetime.

Other common symptoms of fibromyalgia include:
Sleep disorders (e.g., restless leg syndrome, sleep apnea)
Gastrointestinal (e.g., abdominal pain, bloating, gas, cramps, alternating diarrhea and constipation)
Numbness or tingling sensations
Chronic headaches (may include facial and jaw pain)
Heightened sensitivity to odors, loud noises, bright lights, various foods, medicines, and changes in weather
Painful menstrual periods (dysmenorrhea) and painful sexual intercourse (dyspareunia)
Frequent urination, strong urge to urinate, and painful urination (dysuria)
Rapid or irregular heart rate, and shortness of breath
Sensation of swelling (edema) in the hands and feet, even though swelling is not present

Treating a child with Fibromyalgia
Children with fibromyalgia are treated in much the same way as adults, although, of course, any medication dosages must be adjusted for children's weight, and the doctor should also take into account any other drugs the child is taking. When thinking about what medications to prescribe or what over-the-counter drugs to recommend to parents, doctors should always consider any potential problems that may occur to a person who's still growing and maturing. If the doctor doesn't mention it, ask her about potential side effects that can affect children. Drugs do have side effects, so no one should be nonchalant about prescribing medication for children.

It can be very hard on parents when their children have medical problems that others may be suspicious about. The child says that she's in pain or is too tired to get up, but your mother says that she's just lazy, and your uncle says that you're "coddling" her. Maybe you have some underlying doubts yourself about whether your daughter is faking it, and that she could be a hypochondriac. These attitudes are the same kind that adults with FMS have to face. But if the doctor has confirmed that fibromyalgia is present, assume that it's real. And stop worrying about what everyone else thinks or feels. Your ill child urgently needs you to be her advocate. More important, remember that most children with FMS get better after they reach adulthood!

Using medication
Low doses of mild antidepressants, such as Elavil (generic name: amitriptyline), that are administered in the evening may help your child with sleep difficulties and may also ease pain. However, the child may complain of feeling very sleepy in the morning with this medicine, and some children also complain of headaches.

Nonsteroidal anti-inflammatory drugs (NSAIDs), over-the-counter or prescribed, may be considered as well. These include over-the-counter drugs like ibuprofen and prescribed drugs like Vioxx (generic name: rofecoxib) or Celebrex (generic name: celecoxib).

Pediatricians report that NSAIDs usually are more effective with treating arthritis in children than they are with treating kids with juvenile fibromyalgia, although NSAIDs may give some relief to some children. The primary side effect that's identified with NSAIDs is stomach upset, and continued use of NSAIDs can result in gastritis, or stomach inflammation.

Trying therapy
Because depression or anxiety often accompany fibromyalgia, the child or adolescent may benefit from receiving therapy as well as from taking antidepressants. As with adults, cognitive-behavioral therapy (CBT), which teaches the child how to challenge irrational or negative thoughts, is usually the most effective type of therapy.

A child psychologist can provide CBT. But a child psychiatrist is the most suitable professional to prescribe medications, such as antidepressants or anti-anxiety drugs as well as other medications used to treat emotional problems. Medical doctors who aren't psychiatrists can also prescribe medications, but they're not usually as knowledgeable about medications for emotional problems as are child psychiatrists.

Your child need not be mentally ill in order to see a child psychiatrist or psychologist. Psychiatrists and psychologists often see children with minor to major emotional problems, and depression is common among children.

If you take your child with fibromyalgia to see a therapist, make sure that the therapist understands that the pain and symptoms of FMS are not solely created by a child's depression, anxiety, conflicts with parents or school, or other emotional issues. Symptoms may be worsened by such problems, but they don't cause the pain. If the therapist accepts that operating assumption, your child is more likely to succeed with the therapy that's provided.

Children up to the age of adolescence (and sometimes even teenagers!) may enjoy drawing a picture off Mr. Fibro as a way of communicating how they feel. After the child finishes the drawing, you and the child can briefly discuss Mr. Fibro. Don't deny his or her feelings, and let your child do most of the talking. (Adults tend to "jump in" before they're needed.)