What Your Doctor May Not Tell You About Pediatric Fibromyalgia

[Guest guest]

I was pretty surprised to read about the dermatological affects of

fibro. It mentions similar rashes as to what Aundrea always gets.

It also talks about numbness and prickling feeling in feet. The more

I have read about Fibro the more I am completely convinced that this

is truly what Aundrea has.

I hope the info is helpful to others.

sonia (Aundrea 12 fibromyalgia)

What Your Doctor May Not Tell You About Pediatric Fibromyalgia

by R. St. Amand, M.D. and 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 Marek