Pediatric Fibromyalgia

Excerpted from
What Your Doctor May Not Tell You About Pediatric Fibromyalgia: The Program that Helps Boost Your Child's Energy Level
By R. Paul St. Amand, M.D., Claudia Craig Marek, M.A.

Parents usually tell us they have visited several pediatricians and voiced concern about things that just did not seem quite right. They found that the minicomplaints of their child were simply brushed aside. They were often told that the youngster was merely mimicking parental complaints, usually those of the mother (recall that 85 percent of fibromyalgics are women). Other times the "Mommy, my head hurts," "my legs hurt," "my tummy hurts" are attributed to a desire for attention or an attempt to avoid doing an onerous task. Only a stubborn parent persists in the search for answers and an ear that will listen.

Understanding the nuances of pediatric fibromyalgia requires us to think somewhat abstractly. The illness must be viewed as a spectrum, with the least affected or youngest child offering the fewest clues. We have treated many children under the age of ten, including twelve four-year-olds. We recently examined a two-year-old because both her parents and her six-year-old sibling have fibromyalgia. She had symptoms but obviously could not relate them. I had to rely solely on her mother's observations and what my single finger could palpate overlying the muscles and sinews of her tiny body.

While many studies have been done on the demographics of fibromyalgia in adults, few have been done in children. When reviewing materials for this book we were surprised by a completely unexpected finding. We reviewed 190 charts done on the children in our practice, and we realized that the sex bias so clear in adult patients had disappeared. Our younger patients were equally affected, a nearly perfect fifty-fifty split between boys and girls, a fact we have since seen corroborated in surveys of the demographics of children seen in pediatric rheumatology clinics.

We are therefore embroiled in a mystery, one that intrigues us greatly. What could possibly happen, seemingly through the accelerated growth of postpuberty, that would so completely alter the ratio? Where do all the boy fibromyalgics go? Since female predominance remains throughout the decades of life, men don't just briefly lose their susceptibility but quite possibly retain that benefit forever. It is strange to us, and the dilemma remains unexplained.

There is no doubt that boys develop the same disease as girls. But something appears to happen during and following the hormonal surges of puberty. We are puzzling over the possible beneficial actions of testosterone, which is known to play a role in pain sensitivity. Larger bones and muscles could account for some of the discrepancy-but we have yet to understand the full story. If you are the mother of a son, or sons, we certainly know that you should not disregard their complaints because they are boys and therefore thought to be less likely to have fibromyalgia. It means we must be equally vigilant with our sons, at least until puberty.

We have not defined a clear age of onset for fibromyalgia, and several genes seem to play a part in the disease. We believe that there are at least two, and probably more, genetic culprits. We've witnessed fibromyalgia developing in children as young as two and in adults as old as seventy-and at all ages in between. This variation in age seems to suggest a multigenetic condition, and we predict more than a handful of genes will be discovered in the near future.

As we mentioned earlier, we've diagnosed just as many little boys as little girls with fibromyalgia. We also stated that this equal split widens after puberty to become 85 percent women to 15 percent men. However, that wouldn't alter the fact that affected males could carry one or more of the genes that cause fibromyalgia. Fathers can pass the disease on to their children, even if they themselves don't suffer from the ravages of the disease. Children with dually affected parents often cannot escape the illness and are generally stricken well before puberty.

I can trace my FMS back to first grade. The teacher played a game with us all the time for all subjects. She would ask questions and the kid who answered correctly got to sit in the front seat of their row. If you missed, you went back a seat. Well, in every subject I was in the front desk-I remember so clearly knowing the answers as soon as she would ask the questions. Then about halfway through the year I remember feeling as if a shade had been pulled down over my face, as I could no longer understand her or come up with any answers-and now I was in the back of my row. - Bonnie W, southern Illinois

After age nine or ten and certainly by the early teens, a child can describe most of his or her symptoms in reasonable detail. Pains may arise from any muscle, tendon, or ligament just as in grownups. Fatigue and poor stamina are usually quite marked and obvious to parents, teachers, and child. Unfortunately, even at this age youngsters are not particularly descriptive and may not remember even recent symptoms. It will fall to the mother to recall many expressions of pain, functional aberrations, and emotional outbursts. Luckily, within a few months of onset the more observant parent, especially one who has fibromyalgia, should begin making the connection.

Older children are more perceptive and certainly more articulate. When a parent describes past complaints and the adolescent can outline the more recent ones, the tale becomes more cohesive. The story is then more easily interpreted, making the diagnosis somewhat simpler. Bear in mind, however, that teenagers may be obstreperous and refuse to admit being different from others and may steadfastly deny most symptoms. It is wise to make sure that your teenager is willing to be treated if diagnosed, and to sound him or her out for cooperation before dragging him or her to a doctor.

Adults should remain understanding and be prepared for the difficulty the doctor may have in making a diagnosis. Remember that there are no tests for fibromyalgia, and many practitioners simply do not know that fibromyalgia occurs in young children. Many doctors do not accept the idea that fibromyalgia is inherited. When parents sense the physician's confusion in trying to analyze the child's meager symptoms and lack of physical findings, it is time to speak up. It will be very helpful to mention that one or the other parent has fibromyalgia. Ask without fear: "Could this be the same trouble I have but at an earlier stage?" When the clinician is confronted by puzzling symptoms for which there is no easy answer, pointed observations about the immediate family history may prove very relevant.