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 Fibromyalgia Made Simple:
A Parable

Pain has an element of blank;

It cannot recollect
When it began, or if there were
A day when it was not.

It has no future but itself

Its infinite realms contain
Its past, enlightened to perceive
New periods of pain.
Emily Dickinson (1830–1896),
Pain Has an Element of Blank

If you have the chronic pain of fibromyalgia, you may be frustrated by the lack of
understanding shown by people around you. This is particularly true of the people
you live and work with. If only they could feel for 1 day how you feel all year!
Pain has no memory and no mercy. Is it like a bad flu or a severe headache? How
can you find the words to describe it? You might wish to recite this short explana­
tion; the next 200 pages provide the details.
Picture your body as being a series of electrical circuits. Suppose that you have
the unfortunate tendency to injure your shoulder repeatedly. What happens? As
part of a chronic pain response, a wire goes from the shoulder to your spine, and
a second wire then travels up the spinal cord to your brain. The brain receives a
signal that says, “I hurt my shoulder; let me do something about it.” The brain
then makes a chemical or chemicals that suppress the pain. It wires a signal back
down the spinal column, and a second wire returns to the shoulder. The chemical
is released, and the pain gets better or goes away.
What happens in fibromyalgia? Your body becomes “cross-circuited” (Fig. 2).
The body gets flooded with “input” circuits giving it information. The spinal cord
can’t sort out and filter these signals. Larger circuits close off smaller ones. With
time, the electrical circuits become “wiry” and excitable. Normally non-painful
stimuli are regarded as painful ones. The “output” wires fail to alleviate discom­
fort. The circuits discharge signals that increase your perception of pain, not only
in the region that was hurt but also in the area around it. As a result, the processes
 Contents

Foreword vii
Preface ix
Fibromyalgia Made Simple: A Parable xiii

Part I The Whys and Wherefores of Fibromyalgia 3

1. How Our Understanding of Fibromyalgia Evolved 5

2. What is Fibromyalgia? 9
3. Who Gets Fibromyalgia and Why? 14

Part II Basic Science and Fibromyalgia 21

4. Why and How Do We Hurt? 23

5. What’s Wrong with My Muscles? 34
6. How Do Stress, Sleep, Hormones, and the Immune System Interact and
Relate to Fibromyalgia? 38
7. What is the Autonomic Nervous System? 45

Part III How and Where the Body Can Be Affected by Fibromyalgia 51

8. Generalized Complaints 53
9. “I’m Stiff and Achy”—Musculoskeletal Complaints 56
10. Tingles, Shocks, Wires, and Neurologic Complaints 59
11. Insights into Insides: Chest, Cardiovascular, and Other Concerns 65

Part IV The Clinical Spectrum of Fibromyalgia 71

12. What are the Regional and Localized Forms of Fibromyalgia? 73

13. What Conditions are Associated with Fibromyalgia? 79
14. Controversial Syndromes and Their Relationship to Fibromyalgia 94
 All About
Fibromyalgia
This page intentionally left blank
 Part I
THE WHYS AND
WHEREFORES OF
FIBROMYALGIA
Is it nothing to you, all that pass by? Behold and see. Is there
any pain like unto my pain, which is done unto me, wherewith
the Lord has afflicted me in the day of his fierce anger? From
above, he has sent fire into my bones. . . . and I am weary and
faint all the day.
Jeremiah, in Lamentations 11:12–13

In this part the reader will discover how fibromyalgia evolved and was ultimately
defined. Although descriptions of it date back to biblical times, the perception of
fibromyalgia as a syndrome represents a convergence of two historical threads:
those relating to ongoing musculoskeletal pain (joint and muscle aches) and those
dealing with chronic fatigue and a sense of debility. Both official and practical
definitions of fibromyalgia will be discussed, and we will consider the number of
people who have the syndrome, as well as population groups that most frequently
develop it.
This page intentionally left blank
 1
How Our Understanding of
Fibromyalgia Evolved

. . . and wearisome nights are appointed to me. When I lie down,

I say, When shall I arise, and the night be gone? And I am full of
tossings to and fro unto the dawning of the day . . . and the days
of affliction have taken hold upon me. My bones are pierced in
me in the night season; and my sinews take no rest.
Job 7:3–4 and 30:16–17.

There are times when rheumatologists have been accused of making up new syn­
dromes. For example, in the last 20 years, our specialty has described new rheu­
matic entities including Lyme disease, the musculoskeletal manifestations of
acquired immune deficiency syndrome (AIDS), eosinophilic myalgia syndrome
(from L-tryptophan contamination), and siliconosis (which, if it exists, results
from silicone breast implants). Fibromyalgia is not in this group. Evidence for the
syndrome can be found as far back in history as the book of Job, where he com­
plained of “sinews (that) take no rest.”

MUSCULOSKELETAL PAIN AMPLIFICATION

Seemingly exaggerated tenderness of the muscles and soft tissues to touch was
documented in the nineteenth-century medical literature by French, German, and
British scientists, who called it spinal irritation, Charcot’s hysteria, or a morbid
affection. Tender points were first described by Balfour in 1824 and Villieux in
1841. The English physician Sir William R. Gowers (1845-1915) coined the term
fibrositis in 1904 in a paper on lumbago (low back pain) when he tried to describe
inflammatory changes in the fibrous tissues of the muscles of the low back. Gowers
was wrong. There is no such thing as inflammation of the fibrous tissues, but the
term lived on because British physicians used fibrositis to denote pain in the up­
per back and neck areas among Welsh coal miners in the 1920s and 1930s. The
definition of fibrositis cross-pollinated during the Second World War when United
States, Canadian, Australian, and New Zealand physicians served with their Brit­
ish counterparts. Soldiers who were unwilling to fight or who experienced shell
shock, or complained of aches and pains due to carrying heavy gear without any
obvious disease, were diagnosed as having fibrositis.
[6] The Whys and Wherefores of Fibromyalgia

A symptom complex of fatigue, palpitations, dizziness, gastrointestinal symp­

toms, headache, sleep disturbance, and aching was first noted by the Union phy­
sician J. M. da Costa among 300 soldiers during the Civil War who had what he
termed an “irritable heart.” The first mention of fibrositis in the North American
medical literature appeared in a rheumatology textbook chapter written by Wallace
Graham in 1940. Rheumatology established its first fellowship and training pro­
grams in the United States after the Second World War and, more often than not,
their directors were medical officers who had become interested in the discipline
as a result of working with their British colleagues.
No substantive changes in the understanding of fibrositis were evident until a
series of very important observations were published by the rheumatologist Hugh
Smythe and his colleagues at the University of Toronto in the mid-1970s. They
renamed the disorder “fibrositis syndrome” and convincingly connected it to sys­
temic symptoms such as fatigue and sleep abnormalities. Smythe popularized the
use of the tender point examination suggested by others and frequently referred to
fibrositis as a pain amplification disorder.

FATIGUE SYNDROMES
The history of fibromyalgia is one of merging observations from two directions.
Musculoskeletal aches in the soft tissues (supporting areas near muscles and joints)
were termed fibrositis and eventually became associated with nonmusculoskeletal
symptoms such as fatigue and sleep disorders. From the other direction, fatigue
syndromes ultimately were correlated with fibromyalgia. In 1750, Sir Richard
Manningham described febricula or “little fever,” among mostly upper-class fe­
males, who were afflicted with “listlessness, with great lassitude and weariness
all over the body . . . little flying pains . . . the patient is a little . . . forgetful.”
These complaints were aggravated by stress.
Dr. George Beard (1839–1883) first used the word neurasthenia to describe
deficient nerve tone, general debility, poor appetite, and “living on a plane lower
than normal.” This wonderful Victorian expression characterized many women in
English and American literature throughout the nineteenth century, ranging from
Miss Marchmont in Charlotte Brontë’s Villette to Mrs. Snow in Polyanna.
Neurasthenia represented a form of “failure to thrive” and often reflected the stunted
aspirations of worldly women whose ability to get ahead was blocked by out­
moded societal conventions of trying to cope with the Industrial Revolution and
the Age of Mechanization. In his landmark 1899 medical textbook, Sir William
Osler (1849-1919) described neurasthenia as “hyperesthesia, especially to sensa­
tions of pain . . . weariness to the least exertion, pain in the back, aching in the legs
. . . spots of local tenderness . . . the aching pain in the back of the neck is the most
constant complaint in these cases.” All too frequently, neurasthenia was managed
by uptight and condescending male physicians who used a variety of seemingly
 How Our Understanding of Fibromyalgia Evolved [7]

preposterous remedies such as rest cures, overfeeding, electricity, clitoridectomy,

or oophorectomy (removal of the clitoris or ovaries). During the First World War,
males suffering from shell shock resulting from trench warfare and exhibiting
symptoms of neurasthenia were described; thereafter, the term disappeared from
the medical literature.

PROLONGED RECOVERY FROM INFECTIOUS ILLNESSES

Between the 1930s and 1950s, patients exposed to infections such as polio during
epidemics and a bacterial disease known as brucellosis were identified as having
postinfectious chronic fatigue, aching, and debility. Other patients were evaluated
by neurologists and found to have atypical forms of myasthenia gravis or multiple
sclerosis. Some were consequently labeled as having chronic nervous exhaustion,
myasthenic syndrome, Icelandic disease, myalgic encephalomyelitis, or epidemic
neuromyasthenia, depending on where and by whom they were treated. The 1980s
signaled the advent of Epstein-Barr virus syndrome, a postviral fatigue syndrome
ultimately renamed chronic fatigue syndrome. Chronic fatigue syndrome frequently
overlaps with fibromyalgia; this relationship is discussed in chapter 13.

THE LINKAGE OF PAIN, FATIGUE,

CHRONIC NEUROMUSCULAR PAIN, AND
POSTINFECTIOUS SYNDROMES
Smythe’s connection of fibrositis with systemic symptoms and the inappropriate­
ness of the term fibrositis (since no inflammation was present) prompted Dr.
Muhammed Yunus and his associates at the University of Illinois at Peoria to take
up a suggestion of Dr. Kahler Hench (son of Dr. Phillip Hench, the only rheuma­
tologist to win a Nobel prize for discovering that cortisone helped arthritis) that
the term fibromyalgia better described the syndrome. Yunus was also the first to
validate statistically the benefits of measuring tender points and to compare
fibromyalgia populations with healthy normal, or control groups. Published in
1981, these observations were immediately endorsed by nearly all rheumatolo­
gists. Yunus also was the first investigator to associate objectively what is now
called chronic neuromuscular pain complaints such as irritable colon, tension
headache, numbness, tingling, and swelling or edema with the disorder. He also
postulated that chemicals creating these symptoms and signs are also influenced
by factors such as emotional or physical stress or trauma, mood, and behavior.
During the 1980s, studies showed that patients diagnosed with fibromyalgia in­
cluded many originally described as having conditions such as muscular rheuma­
tism, musculoligamentous strain, and other syndromes diagnosed by orthopedists,
neurologists, neurosurgeons, and physical medicine specialists. Further, the devel­
opment of tests supporting scientifically acceptable, reproducible abnormalities in
[8] The Whys and Wherefores of Fibromyalgia

fibromyalgia led the American Medical Association in 1987 to editorialize that the
syndrome truly existed. A committee subsequently was formed to devise a defini­
tion and description of fibromyalgia for statistical and research purposes, and these
criteria were adopted by the American College of Rheumatology in 1990.

SUMMING UP
A biblical description of a set of symptoms and signs culminated in the recogni­
tion of a syndrome characterized by musculoskeletal complaints combined with
fatigue, poor sleep, pain amplification, and other nonmusculoskeletal symptoms.
The concept of fibromyalgia has clearly come a long way, but there are many
miles to travel. The next two chapters will define fibromyalgia and describe those
among us who are susceptible to it.
 2
What is Fibromyalgia?

A woman armed with sick headaches, nervousness, debility, pre-

sentiments, fears, horrors, and all sorts of imaginary and real
diseases has an external armory of weapons of subjugation.
Harriet Beecher Stowe (1811–1886), Pink and White Tyranny, 1871

When the Arthritis Foundation tried to categorize the 150 different forms of mus­
culoskeletal conditions in 1963, it created a classification known as soft tissue
rheumatism. Included in this listing are conditions in which joints are not involved.
Soft tissue rheumatism encompasses the supporting structures of joints (e.g., liga­
ments, bursae, and tendons), muscles, and other soft tissues. Fibromyalgia is a
form of soft tissue rheumatism. A combination of three terms—fibro (from the
Latin fibra, or fibrous tissue), myo- (the Greek prefix myos, for muscles), and
algia (from the Greek algos, which denotes pain)—fibromyalgia replaces earlier
names for the syndrome that are still used by doctors and other health profession­
als such as myofibrositis, myofascitis, muscular rheumatism, fibrositis, and gener-
alized musculoligamentous strain. Fibromyalgia is not a form of arthritis, since it
is not associated with joint inflammation.

THE AMERICAN COLLEGE OF RHEUMATOLOGY (ACR)

FIBROMYALGIA CRITERIA
In the late 1980s, a Multicenter Criteria Committee under the direction of Dr.
Frederick Wolfe at the University of Kansas was formed to define fibromyalgia.
In their study, 293 patients with presumed fibromyalgia were compared with 265
patients who had other rheumatic diseases in 16 centers throughout North Amer­
ica. The groups were evaluated for a variety of symptoms, signs, and laboratory
abnormalities in an effort to ascertain which factors were the most sensitive and
specific for defining the disorder. In other words, the investigators wanted to iden­
tify the most frequently found features of fibromyalgia (sensitivity) that could
help doctors differentiate it from other disorders (specificity). The list in Table 1
(illustrated in Fig. 3) was 88.4 percent sensitive and 81.1 percent specific in iden­
tifying fibromyalgia patients. As a result, these criteria were endorsed in 1990 by
the American College of Rheumatology (ACR), the association to which nearly
all 5,000 rheumatologists in the United States and Canada belong.
[10] The Whys and Wherefores of Fibromyalgia

Focusing on Table 1 and Figure 3, fibromyalgia essentially is:

1. Widespread pain of at least 3 months’ duration (this rules out viruses or

traumatic insults which resolve on their own).
2. Pain in all four quadrants of the body (picture cutting the body into quarters,
as in a pie): right side, left side, above the waist, below the waist.
3. Pain occurring in at least 11 of 18 specified “tender” points (as shown in the
figure) with at least one point in each quadrant.
4. Pain defined, in this context, as discomfort when 8 pounds of pressure are
applied to the tender point.

Tender points usually occur in a specific distribution. For instance, 8 of the 18

tender points are in the upper back and neck area, and only two are below the
buttocks. The reader should be aware that tender points can occur almost any-

Table 1. The 1990 ACR Criteria for Fibromyalgia

1. History of widespread pain.

Definition: Pain is considered widespread when all of the following are present: pain in the left
side of the body, pain in the right side of the body, pain above the waist and pain below the
waist. In addition, axial skeletal pain (cervical spine or anterior chest or thoracic spine or low
back) must be present. In this definition shoulder and buttock pain is considered as pain for
each involved side. “Low back” pain is considered lower segment pain.
2. Pain in 11 of 18 tender point sites on digital palpation.
Definition: Pain, on digital palpation, must be present in at least 11 of the following 18 tender
point sites:
Occiput: bilateral, at the suboccipital muscle insertions.
Low cervical: bilateral, at the anterior aspects of the inter-transverse spaces at C5–C7.
Trapezius: bilateral, at the midpoint of the upper border.
Supraspinatus: bilateral, at origins, above the scapula spine near the medial border.
2nd rib: bilateral, at the second costochondral junctions, just lateral to the junctions on upper
surfaces.
Lateral epicondyle: bilateral, 2 cm distal to the epicondyles.
Gluteal: bilateral, in upper outer quadrants of buttocks in anterior fold of muscle.
Greater trochanter: bilateral, posterior to the trochanteric prominence.
Knees: bilateral, at the medial fat pad proximal to the joint line.
For a tender point to be considered “positive” the subject must state that the palpation was
painful. “Tender” is not to be considered painful.

Note: For classification purposes patients will be said to have fibromyalgia if both criteria are satisfied. Wide­
spread pain must have been present for at least 3 months. The presence of a second clinical disorder does not
exclude the diagnosis of fibromyalgia.
 What is Fibromyalgia? [11]

Fig. 3 Fibromyalgia tender points. (Adapted from “The Three Graces,”

Louvre Museum, Paris. From D.J. Wallace, The Lupus Book. New York:
Oxford University Press, 1995, p. 170; reprinted with permission from Dr. F. Wolfe.)

where in the body; the ACR criteria simply represent the most common 18 points.
A consensus conference later agreed that the four factors listed above do not have
to be present at the same time in order to meet the criteria. Therefore, a patient
may have only right buttock pain on one day and left upper back pain on another,
or have different tender points on different days.
Once fibromyalgia was defined, it was possible to perform more reliable stud­
ies on this syndrome, since all researchers would be using the same definition. We
could now explore how many people in the United States had fibromyalgia, deter­
mine what their primary complaints were, and identify groups of people on whom
[12] The Whys and Wherefores of Fibromyalgia

to test new treatments. Reporting a reproducible set of symptoms and signs has
had additional fringe benefits: patients can be clearly educated on their condition;
medical and other professional schools can teach students about fibromyalgia us­
ing a core terminology that has high sensitivity and specificity; and insurance
companies now recognize fibromyalgia as a distinct syndrome.

OTHER FEATURES OF FIBROMYALGIA

In the previous chapter, we mentioned that fibromyalgia is associated with fa­
tigue, sleep disturbances, and bowel complaints, among other symptoms and signs.
How do these symptoms fit into the definition of fibromyalgia? The criteria com­
mittee considered these findings and correlated them statistically with the syn­
drome, but the symptoms did not have a high enough score in enough patients to
be part of the definition. For example, Dr. Wolfe, in another article in 1990, stated
that sleep disturbance, fatigue, numbness or tingling, and anxiety had more than a
60 percent occurrence in defining fibromyalgia, and headache or irritable bowel
had more than a 50 percent occurrence. In fact, he observed that the presence of
seven of 18 tender points with four of the six features listed above was “highly
suspicious” for the diagnosis.
In response to this, a group of international fibromyalgia experts issued what
was termed the Copenhagen Declaration in 1992 and adopted by the World Health
Organization in 1993. They recognized the use of the ACR criteria for research
purposes but defined fibromyalgia as being part of a wider spectrum encompass­
ing headache, irritable bladder, spastic colitis, painful menstrual periods, tem­
perature sensitivity, atypical patterns of numbness and tingling, exercise intolerance,
and complaints of weakness in addition to persistent fatigue, stiffness, and
nonrestoring sleep.
It should be emphasized that disease definitions and criteria are always being
updated and refined. In the next decade the ACR fibromyalgia criteria will prob­
ably be revised and hopefully will include newer forms of blood testing or brain
imaging abnormalities.

FIBROMYALGIA TERMINOLOGY:
CLASSIFICATION AND REGIONAL FORMS
Many rheumatologists recognize two types of fibromyalgia: primary and secondary.
The cause of primary fibromyalgia syndrome is unknown, but it can be induced
by trauma, infection, stress, inflammation, or other factors. Secondary fibromyalgia
occurs when a primary condition, such as hypothyroidism or lupus, creates a con­
comitant fibromyalgia, the treatment of which may make the syndrome disappear.
The next chapter will review this topic in more detail.
Sometimes, pain identical to that associated with fibromyalgia is located in
specific areas or regions or in one quadrant of the body. For example, patients