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What Your Doctor May Not Tell You About Pediatric Fibromyalgia

by R. Paul St. Amand, M.D. and Claudia Craig Marek, M.D.

WHAT IS FIBROMYALGIA?

It feels like every muscle in my body is going to throw up.
-Malcolm Potter, age eight, Los Angeles, California

I especially and clearly remember periods of extended lethargy and tiredness when I was too tired, didn't feel like doing anything, when my friends were biking and I could not keep up, or playing ball or swimming or playing tennis, which was absolutely tortuous. I was labeled as lazy—but physically I could just not keep up. When I look back at my childhood, I see a child who sometimes felt okay, but who often just trudged along thinking everyone felt this way but they overcame it because they weren't lazy.
-S.R.C., Lancaster, South Carolina


Fibromyalgia means simply "a condition of pain in the muscles and fibers." The name was chosen to replace fibrositis about twenty years ago. The suffix "itis" implied inflammation but as there is none in this disease, the old name was quickly discarded as a bad moniker. Though pain is certainly a prominent symptom of fibromyalgia, this newer name does not very adequately describe the condition either—in adults or children. For now, as we introduce and review what fibromyalgia is, we won't be concerning ourselves with the nuances that make up the subtle differences we've observed in the different age groups of sufferers. We'll leave that topic for the next chapter. For right now, let's explore fibromyalgia in more general terms.

The illness has been around for at least as long as written history, from what we can tell. It was called rheumatism, neuralgia, myalgia, and unkinder things (like hysteria and hypochondria) before modern medicine officially defined it in the 1990s. So fibromyalgia, the name we use today, is quite possibly the same age as your child! That may be why you can't trace the condition through your family tree—there was no illness by this name even a generation ago.

We previously proposed the name dysenergism in our first book, What Your Doctor May Not Tell You about Fibromyalgia. We did this because we think such a name would better reflect the subjective and biochemical lack of energy that is so central in the lives of those who suffer from fibromyalgia. Only a rare patient does not feel this loss of stamina. Almost all realize how very little energy they have, and how quickly it is depleted. The best research evidence to date confirms that cells throughout the body have difficulty producing energy, and corroborates what patients have been stressing. The most common recollection of adults who had symptoms as children was of the rapid waning of endurance compared to that of their peers. Pain, while a common complaint, seems to arise from tissue that can't make enough energy, and stiffness, cramping, and aching are a result of that. It's highly unlikely, of course, that the name will be changed again, but as you read along, bear in mind that the name fibromyalgia itself isn't very descriptive of the totality of this condition, which really has an effect on almost every cell of the body.

There are no blood tests, or any other standard medical tests that show any abnormalities unique to fibromyalgia, so the disease can't be diagnosed the way most conditions are. Instead, if a physician suspects you or your child has the illness, there are several criteria he or she will use to confirm the diagnosis. These were first put together by a group called the American College of Rheumatology in the late 1980s. The acronym for this august body (ACR) is one you'll surely come across a lot if you do any reading in medical journals.

Although we don't use the ACR criteria in our practice, per se, we think we should let you know what they are. The reason for this is that most doctors do use what we consider this overly narrow view of the illness. Most of what you read is based on this original work.

So what is the textbook description of fibromyalgia according to the "official party line" of the World Health Organization, the gospel according to the ACR that was delivered via the World Congress in Copenhagen in 1992? Well, fibromyalgia is defined first and foremost as a painful condition of muscles that causes chronic and widespread pain or aching throughout the whole body—that is, in all four quadrants of the body, for more than four months' duration. This pain or aching is qualified by the word "unexplained," meaning that it has no known cause, such as being run over by a truck.

Though you may feel as if you've been run over by roadbuilding equipment in the mornings when you wake up, if you actually have been, then you have pain but not fibromyalgia! Next you must have some of the other symptoms: morning stiffness and nonrestorative sleep, and the presence of tender points—that is, tenderness in eleven of eighteen predetermined sites. Headaches, irritable bladder, restless legs, insomnia, exercise intolerance, weakness, areas of abnormal sensations such as numbness, tingling, and cold extremities round out the list of "official complaints."

As you'll read below, we examine the whole body for abnormal findings, not just a few spots. We also record and monitor quite a few more symptoms, some of which, admittedly, are accepted as part of fibromyalgia now, but were not mentioned back in 1990. The ensuing years have brought forth some newly accepted relationships between fibromyalgia and other symptoms, such as vulvodynia, skin sensations, and increased sensitivities to chemicals, sound, and noise.

Fibromyalgia is known to affect mostly women, about 85 percent of those diagnosed. It's not as uncommon as you might think: Statistics show at least 5 percent of the population probably has it, and about 20 percent of patients seen by rheumatologists are eventually told that they have the illness.

Most books and papers about fibromyalgia repeat as a litany that it presents mainly between the ages of twenty-five and fifty-five. Yet we know that it can manifest itself in any year of life. We have seen patients with disease onset as young as two and as old as seventy-four. Had these authors been involved in treating the full spectrum of patients and the illness, they would have better recognized its frequency in all age groups. Should they not wonder what has happened to patients over fifty-five? Similarly, should they not ask themselves when does fibromyalgia first begin and what are its earliest symptoms? It can be easily seen from looking at the original defining papers on fibromyalgia that nowhere is it stated that patients must be over or under a certain age. It was only later papers, studying the demographics of the illness, that gave rise to this now too-commonly held belief. Some physicians will staunchly insist fibromyalgia can't exist in children or men.

When it comes to the latter, they'll often call the condition "chronic fatigue syndrome" despite the fact that patients may also complain of chronic pain or stiffness.

Pain is certainly an important clue used in making the diagnosis of fibromyalgia. It's rare to encounter a patient with no pain, but pain is subjective, and we've noticed that most people really don't consider it their primary complaint. Exhaustion, fatigue, and poor stamina are usually listed first. Children may also complain of fatigue and irritable bowel symptoms more often than, say, shoulder pain. Older patients may be troubled by depression and sleep disturbances. That's why it's important for us to stop for a minute and examine all the common symptoms of this disease.

The full-blown picture of fibromyalgia is overwhelming because so many bodily structures and systems are affected by diminished energy production. For clarification only, we usually separate the symptoms into groups we call syndromes. However, the head bone is connected to the toe bone. The interlocking biochemistry and physiology of living tissues mandates a strong interplay between all the body's systems, however separate they may seem.

CENTRAL NERVOUS SYSTEM

In this listing we include the so-called "brain symptoms" of fatigue, irritability, nervousness, depression, apathy, listlessness, anxieties, suicidal thoughts, and impaired memory and concentration. Insomnia can prevent one from getting to sleep even when one is exhausted. Patients cannot find a position that remains comfortable very long. Frequent awakening is common because of discomfort and pain. Consequently, sleep is rarely restful and is said to be nonrestorative.

MUSCULOSKELETAL

Pain in any muscle, tendon, ligament, or fascia may be involved, though the shoulders, neck, upper and lower back, hips, knees, inner and outer elbows, wrists, and chest are the most commonly affected. Generalized morning aching and stiffness are usually present. It is frequently stated that joints are not affected in fibromyalgia, but everyone with the disease knows better. Sites of previous injuries, either traumatic or surgical, are among the structures most involved.

IRRITABLE BOWEL

This is often called by other names, such as leaky gut, spastic colon, or mucous colitis. There is sometimes a steady abdominal aching that is probably due to the involvement of deep intra-abdominal tissues. Overacidity may cause burning in the pit of the stomach, or an acid reflux produces a burning chest pain. Nausea occurs in brief but repetitive waves. Gas and bloating create a wandering discomfort and, at times, cramping or sharp, stabbing pains. There are brief of prolonged bouts of constipation alternating with diarrhea, with or without mucus that may accompany either one.

GENITOURINARY

Increased frequency of urination is sometimes accompanied by pain in the lowest part of the abdomen caused by bladder spasms. Unrelenting pain above the pubic bone and frequent voiding, in the presence or absence of infection, evoke the diagnosis of chronic interstitial cystitis. Burning upon urination may be brief (one or two voids only) or persistent. Intermittently, urine may have a pungent odor that is difficult to describe. It smells like the breakdown product of recently ingested asparagus mixed with acid, kerosene, and new-mown hay. (Feel free to make up your own or accept that as our best description.) The vulvar pain syndrome (vulvodynia) includes deep vaginal spasms, irritation of the vaginal lips (vulvitis) or similar changes in the pelvic opening (vulvar vestibulitis). The premenstrual syndrome with uterine cramping and abdominal bloating is greatly intensified. (Everything about fibromyalgia is worse during the premenstrual week.) Vulvodynia closely mimics symptoms of yeast infections but without the usual thick, cottage-cheese discharge.

DERMATOLOGIC

Hives, red blotches, tiny bumps, blisters, eczema, seborrheic dermatitis, neurodermatitis, and acne are common. Itching occurs with or without rashes. Nails become brittle and readily peel or chip in cycles or permanently. Hair has a poor quality and falls out prematurely, often in clusters. The skin may be supersensitive to touch or to temperature changes. Sudden flushing of the ears, face, or upper front chest is frequently observed. Patients experience prickling, tingling, numbness, or burning anywhere, but especially in their palms or soles, with or without redness. Crawling sensations induce a futile search for the fallen hair or bug that is never there.

MISCELLANEOUS

Headaches are often of migraine intensity. Dizziness is mainly a sensation of imbalance, but vertigo (actual spinning) may appear in sporadic attacks. Patients often have itching, burning, or dry eyes and transient or prolonged blurring of vision. Chronic nasal congestion and postnasal drip are usually present. The entire mouth may feel as if it has been scalded, often with a metallic or foul taste. The tongue may also feel burned or scraped, especially around the edges. Swishing, flapping, or ringing (tinnitus) sounds may be heard fleetingly. Vibrations, numbness, and tingling hands, feet, or face are frightening, especially when they are accompanied by severe headaches. Leg or foot cramps are sporadic. Other symptoms occur, such as weight gain (twenty pounds or more), low-grade fevers (usually less than one hundred degrees), and increased susceptibility to infections.

Sensitivities to light, sounds, odors, or chemicals along with hay fever and asthma often lead to allergy testing. Water retention is usual during attacks and causes morning swelling of the eyelids and hands. As the day progresses, there is a gravitational shift of fluid that may induce the restless leg syndrome as the skin is stretched from within by the invisible edema.

In the end, it is often simply the sheer number of complaints that alert a physician to suspect the diagnosis. Few conditions so thoroughly invade the body. Yet, as we stated above, no abnormalities are found by the customary x-ray or laboratory studies. A few may appear with esoteric testing in research facilities but none are diagnostic of fibromyalgia. This does not mean that the illness is not real, or that it doesn't exist. It just means science hasn't figured it out yet. Any physician or other person who implies that fibromyalgia isn't a real, distinct illness isn't very well-informed. It is not a wastebasket, catch-all name for something that's not really accepted. It is something millions of people have, and a condition that has an effect on the lives of millions more. Too many people know too little about it, that's true. But it's not true that it isn't an accepted medical condition.

It is also true that awareness of the disease is recent, as is its sometimes abominable method of treatment. No one should so soon be allowed to steal the term "traditional" and impose a dogmatic approach to the condition, especially because so few treatments have been shown to be beneficial. Conversely, we should willingly accept new criteria for diagnosis and gladly adopt a more effective and safer treatment.

As we alluded to above, in 1990, a uniform system of examination was adopted to aid physicians in making the diagnosis of fibromyalgia. The Copenhagen Declaration, as this document was named, had been written by the American College of Rheumatology (ACR) a few years earlier. Its primary focus is directed to nine different, symmetrically located areas on each side of the body for a total of eighteen potential sites where physicians are urged to seek the so-called "tender points." Pain must exist in at least eleven of the predetermined places upon the application of a prescribed amount of pressure. There must be at least one painful spot in each quadrant of the body. In addition, other symptoms must fit the description of fibromyalgia, and all must have been present for at least three months.

Is this an artificial and almost whimsical way of separating fibromyalgics from the rest of the world's population? Of course it is. However, it serves a purpose in that each medical researcher and author understands what is meant when a colleague writes about fibromyalgia. It is assumed or stated that the author has followed these American College of Rheumatology criteria when making the diagnosis.

But what about the individual who does not sense pain when pressure is exerted on the predetermined sites? What if the examiner can palpate swelling, sometimes painless, in those or other locations? Should we ignore such findings? What allowance is made in this arbitrary system for those with higher pain thresholds? What about those who have pain in only ten sites? Do we tell them to "come back next year when you have the necessary eleven"? How on earth would one use this method on a four-year-old child? In our hands, the above ACR criteria have proven to be of little help, by reason of these questions and for other substantial reasons.

Physicians will normally take a careful history when dealing with any illness. We think they should also delve deeply into childhood to uncover the earliest symptoms of fibromyalgia, which would escape the more casual interview. We accomplish that goal by systematically inquiring about each symptom from a long checklist we have developed. This is important to us because, as you will read, our treatment protocol can reverse the illness. It's helpful for our patients to establish a timeline and a sense of how long they have really been sick. Reversal will move them back through the timeline we establish together at the time of our first encounter, so we're meticulous about taking a history. This is of much less importance to physicians whose goal is to medicate away symptoms, since they have no reason to be concerned about how long they may have been present.

We have certainly developed a better diagnostic process and a far more definitive method of examination for fibromyalgia. Unfortunately, its simplicity is not yet appreciated or adopted by the majority of my colleagues. We concentrate on the swollen, spastic, and contracted areas scattered all over the external structures of the body. With only a bit of training, fingers become like eyes that begin to perceive the underlying problem.

Forty years ago, when I began seeing patients with what seemed like a new disease, there were no American College of Rheumatology criteria to advise me, or to designate tender points arbitrarily. I began simply by using my hands on patients to see if I could determine what was causing their pain— a method not quite so novel to older physicians. We had always been taught to examine the places where someone hurt. It was not long before I realized how very many parts of muscles, tendons, and ligaments were swollen in my patients who complained they hurt all over. The lumps and spasms were readily palpable, especially so the more practiced I became. Maybe that's the simple reason I believed they weren't hypochondriacs faking symptoms. I could find tangible evidence corroborating what they were telling me.

As my work continued with these patients, and as I stumbled upon what would become my treatment protocol, this system of examination evolved into what we now call mapping. We designed a caricature of the body with a front and back view. Multiple small boxes at the bottom of the picture list nearly all of the most common symptoms we encounter in fibromyalgia. We print these by the thousands because we use them when we evaluate our fibromyalgic patients, something we do every visit. After listening to their histories, we tell patients, "For now you are only a silent mannequin and we will record only what we can palpate and not what you feel." We begin by palpating the jaw joints, the TMJs, and sweep over most of the body's external muscles, tendons, ligaments, and skeleton. We represent our findings of that examination by marking in lesions on the drawing. We carefully record their size, shape, and location. We also darken them according to the degree of hardness we perceive. This is not a search for sore spots. We do not include areas because they are tender, only palpable abnormalities—that is, what our hands can feel. In this way, the patient's subjective complaints are in fact validated by objective physical findings. We don't have to be concerned, as some specialists are, that patients are malingering, because we are working with something objective, something that can be measured and felt. If fancy new tests won't show an abnormality, it's our contention that we should go back to the one reliable test that does—an old-fashioned hands-on examination. It may not be politically correct in this day of computer-generated printouts, big, expensive machinery, and graphs—and it may not be what some doctors like to do—but it's reliable and it doesn't require any fancy equipment. We've found that a simple hands-on examination tells the story.

This initial map serves as our baseline and the only objective evidence of fibromyalgia it is possible to obtain. It amplifies and validates what we extract from our detailed medical history. We remap our patients at each subsequent visit while hiding our earlier maps from our view. Only upon completion of the examination do we retrieve the older sketches for comparison. This system has effectively permitted us to find the proper dosage of our medication and to confirm reversal of the disease. It has provided us with clusters of meaningful data accumulated on several thousand people these past forty-plus years. Based upon patient observations and our series of maps, we have learned most of what we have already related and what we will describe in the remainder of this book.

We have deliberately repeated our description of fibromyalgia though this material was thoroughly covered in our first book, What Your Doctor May Not Tell You about Fibromyalgia. If you are interested in more depth than this chapter provides, you can certainly refer to that book. We have re- emphasized all the symptoms because it is important that our readers first understand the disease's full ramifications. As we continue, we will add more information to help clarify why we are able to use the same parameters for diagnostic purposes in children regardless of age. If the full spectrum of the disease is grasped, then the nuances of pediatric cases are easier to discern.

Copyright © 2002 by The St. Amand Trust and Claudia Marek

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