It can start off quite subtly: a bit of
muscle pain, along with some generalized aches and stiffness. Then there
are periods when concentration is impossible, a day or two of overwhelming
fatigue, and maybe a little dizziness, cramps, and diarrhea. Symptoms come
and go at first, and it's easy to chalk them up to a mild case of flu that
never quite localizes, to overexertion and too much stress in your life.
Then, one day, you realize it hasn't gone
away—it never goes away anymore. One part or another of your body always
hurts. You feel stressed and irritable all of the time. You wake up tired
every morning. In short, you haven't felt "right" in a long
time. The symptoms begin to worsen, and you notice new ones. Perhaps
depression, numbness and tingling of the hands, leg cramps, stiffness,
headaches, or bladder infections. Often you can no longer sleep through
the night. Sometimes it's pain that keeps you awake; sometimes you don't
know what it is that keeps you from falling asleep. When you do sleep, you
wake up tired and unrefreshed. You crave sugar or other carbohydrates, and
if you give in to this craving, you tend to gain weight and feel even
worse. Then, before you know it, bad days outweigh the good ones, and
eventually there are no good days, just ones that range from bad to worse.
It feels like coming down with the flu,
yet it never manifests fully. It's like being fluish, achy and tired,
and embarrassed and discouraged about it because you don't know why or
what you can do to make it better or what you did to make it worse.
Everyone gives advice but they don't have a clue as to what it's
really like. Having people tell you to eat differently and exercise
more and not focus on your health makes you just want to isolate
yourself because you've already experimented with every possible food
plan, supplement, and idea.
—Miki K., Hawaii
You become increasingly immobile. Gradually
and without realizing it at first, you stop making plans because you never
know how you will feel, and you become mostly housebound or bedridden. The
simple task of going to the supermarket can be an impossible chore. By now
you have visited doctors of various specialties in the hope that one of
them will be able to tell you what's wrong and set things right. When the
pain is bad, you seek out chiropractors and massage therapists, and maybe
you try acupuncture and alternative treatments like herbs or homeopathy.
You have had many diagnostic tests run, costing hundreds, perhaps even
thousands of dollars. Your friends have offered you a lot of advice about
vitamins and nutritional supplements that have helped them or someone they
know. But you are already taking a regimen of vitamins, minerals, and
enzymes, and you do not feel much better. You may have heard the word
"fibromyalgia," and maybe you know whether or not you have it.
No one has told you how to treat your disease, although they have many
ideas about how to ease your symptoms.
Your life has entered a downward spiral of
pain, depression, and fatigue. You have a great deal of guilt about not
being the person you used to be. Unless you are blessed with an
exceptional companion, your personal relationships have suffered or
completely fallen apart. You worry about your ability to care for your
children. You may even contemplate suicide.
It feels like everyone around me is
normal and happy and having a good time and I'm so different. I want
to have a few normal days. I don't fit in anywhere because no one
understands. People laugh and say "You look fine" but I'm
dying inside and I can't explain it to them. I'm so tired of
pretending I'm okay when I want to scream. I have kept a positive
attitude for so long but it's exhausting and I just can't do it
anymore. I wish I could just go away somewhere and hide.
—Susie
This is an oversimplified picture of what
it's like to have fibromyalgia. Those of you who have it know that it is
far more involved than this. I know what you're going through. I am
intimately familiar with the personal struggles that each and every one of
you has experienced with this illness either as sufferers or as their
supporters. I have lived with your pain, your fatigue, and your despair.
I have spent my entire medical career
treating patients with symptoms such as these and more. Headaches, jaw and
facial pain, abdominal discomfort, dizziness, memory lapses, vulvar and
bladder pain, itching and rashes, all plague fibromyalgics. Until
recently, doctors told patients like you that your illness was due to
"nerves." And, to underscore this diagnosis, patients were
reminded that the pages and pages of tests run on them had shown
"nothing wrong."
Fibromyalgia is prevalent in all ethnic
groups in all parts of the world. In North America, it is estimated that
about five percent of the adult population suffers from this disease,
although I believe the actual rate is higher. Conservatively then, some
twenty million Americans suffer from fibromyalgia and its related
disorders—most are women, with the ratio of women to men at about five
to one. There is some evidence, mostly anecdotal, that this statistic may
be skewed due to the fact that men are often either misdiagnosed or less
likely to visit a doctor. Rheumatologists say fibromyalgia is the most
common disorder they see.
Another twenty-five million people suffer
from chronic fatigue syndrome, which I (and most other physicians) believe
is the same disease. I have good reasons to conclude through my work that
today's fibromyalgia is the prelude to tomorrow's osteoarthritis that
afflicts another thirty-five million people. Adding these numbers would
suggest that one third of our population will suffer with some of the
symptoms of fibromyalgia at some point in their lives. And this does not
include those who have been diagnosed with other "syndromes,"
such as myofascial pain, chronic candidiasis, vulvar pain, irritable bowel
and irritable bladder, and so on—who in all probability have
fibromyalgia as well.
My rheumatologist told me I was too old
to have FMS. At that time I was fifty-four, never mind the fact I had
had symptoms most of my life. The disease had become "full
blown" when I was about fifty-one. . . . After another year of
suffering, I diagnosed myself via the Net. My DO (Doctor of
Osteopathy) sent me back to the same rheumatologist because he is the
only board-certified one in our area. At that time he told me I was
too old to have FMS but even if I did there was nothing that could be
done. . . . I have since been diagnosed with FMS by three other
doctors, all of whom have told me the only thing they could do was
treat my symptoms. I was as good as I would ever be and would get much
worse.
—Betty, Texas
"Rheumatism with painful hard
places" which can be felt in various locations on the body is
considered the first description of fibromyalgia in modern medical texts,
by a doctor named Froriep in 1843. Sir William Gowers of University
College Hospital in London, who began by studying his own lumbago,
initially dubbed this disease "fibrositis" in 1904. Dr. Gowers
observed that his patients were also exhausted and that the disease was
"so painful it would make a strong man cry out." He tried
everything he could think of in an attempt to relieve this pain, including
injecting cocaine into the tender points (it didn't work very well) and
having patients take a newly discovered drug called aspirin that, he
observed, didn't work very well either. "Fibromyalgia," a Greek
word meaning pain in the muscles, has now all but erased fibrositis and
rheumatism as the name of this disease.
On New Year's Day 1993, fibromyalgia was
officially declared a syndrome by the World Health Organization (WHO) in
the Copenhagen Declaration. It was declared the most common cause of
widespread chronic muscle pain. As a new entry in the ICD code
(International Statistical Classification of Diseases and Related Health
Problems) it became an official diagnosis that, among other things, a
doctor could use to bill insurance companies and to label a patient
disabled. The WHO decided to incorporate into the definition of the
disease the American College of Rheumatology's 1990 definition penned by
Drs. Muhammed Yunus, Hugh Smythe, and Frederick Wolfe. This had carefully
detailed the location of eighteen tender points symmetrically located
around the human body. The presence of at least eleven out of eighteen of
these was considered the gold standard for diagnosis, along with muscle
pain.
But the World Health Organization went a
little farther. The Copenhagen Declaration added: "Fibromyalgia is
part of a wider syndrome encompassing headaches, irritable bladder,
dysmenorrhea, cold sensitivity, Reynaud's phenomenon, restless legs,
atypical patterns of numbness and tingling, exercise intolerance, and
complaints of weakness." It also recognized that patients are often
depressed.
Today, thousands of medical articles later,
fibromyalgia is almost universally recognized as a distinct illness.
Sadly, there remain a few doctors who still try to tell patients it is
simply a catchall name for a collection of symptoms shared by a group of
neurotic women, but luckily they are increasingly rare. Despite so many
articles and so much speculation, much of fibromyalgia remains poorly
understood. It is a complex and chronic disease that causes widespread
pain and profound fatigue—accompanied by a range of symptoms that make
simple, everyday tasks daunting, difficult, and sometimes even impossible.
Once upon a time, a lifetime ago, I was
a gymnast, played in tennis leagues, golfed, played on a softball
team, and panned for gold in the Colorado mountains. . . . Now I am
lucky if I can walk to my mailbox—usually I have to drive. If I can
make the stairs, I go down to check on the laundry situation, or go
upstairs to see if the dust has carried away the entire floor.
—Gloria
Symptoms affect widely disparate parts of
the body. Doctors don't always realize that tenderness in the neck area,
frequent bladder infections, and brittle nails, for example, are symptoms
of the same illness. Patients, often young women, look "well"
and many have learned to put up a façade in the workplace or with
friends. A growing number of people have now heard of fibromyalgia and
know someone who has it. Lists are available that detail the multiple
symptoms of the disease, but it remains a phantom illness that has few
concrete findings to the casual examiner. It still lacks a laboratory test
to confirm its existence, and no scans or X rays can detect it. For these
reasons, fibromyalgia is often described as an "invisible
disability."
Yet a well-conducted history will unveil
the chronology of the cyclic symptoms that point to a diagnosis. This is
easily confirmed by the many abnormalities in muscles, tendons, and
ligaments revealed by a detailed examination. Some doctors enjoy semantics
and argue whether this is a syndrome or a true disease.
"Disease" is exactly that: lack of ease, and fibromyalgics are
certainly qualified to wear that name. Symptoms and findings that
regularly appear together in a number of patients are grouped as a
"syndrome." Congratulations! Fibromyalgia is that, too.
The painful areas of tenderness are often
superimposed at the sites of previous injuries or surgery, so some believe
that it is caused by trauma. We believe that there are good scientific
reasons why this should be, but we also believe the disease-syndrome is
inherited. Since eighty-five percent of fibromyalgia patients are women,
at least one gene is undoubtedly on the X chromosome. But there must be
more than one gene involved, since we have seen the illness begin as early
as the age of four and as late as the age of seventy-four. That spread
would be impossible to explain with only one defective gene.
There is no doubt in my mind that there
is a genetic predisposition to FMS. My eighty-six-year-old father has
had it since my teen years. My mother recently told me when I asked
about his leg pain that the doctor said years ago that there were
lumps in his legs.
—M. Bush, Alabama
Although fibromyalgia is not a terminal
illness, it is a demoralizing and debilitating one. The symptoms can be
unbearable—so unbearable that the so-called "Suicide Doctor,"
Dr. Kevorkian, has helped several fibromyalgia patients end their
suffering. In 1997, one of these fibromyalgics was forty-year-old Janis
Murphy. After her death, her father spoke out about his daughter's
condition. "Over the years, I've seen my daughter experience
intractable and unrelenting pain." He hated losing his only child,
but "there are things in this world worse than death."
The currently accepted method for helping
fibromyalgics is to recommend exercise (knowing the patient can't do it)
and to employ a war chest full of chemical Band-Aids used simply to
palliate the lengthening litany of symptoms. Medical professionals
unwittingly promote increasing disability when they prescribe
ever-stronger medications that, sooner or later, deplete energy even
further and deepen the mental haze. Along with the failure of exercise
programs, massage, and physiotherapy, patients accept their lot and become
victims of their disease.
To make bad matters even worse, long-term
disability insurance companies have now entered the fibromyalgia fray and
help to confound progress. It is to their advantage to insist that the
disease and all of its variations stem from psychiatric disorders. They
often have no difficulty in finding a psychiatrist who will agree. Since
the vast majority of insurance policies do not cover mental disability
beyond a specified time, there is a great deal of money at stake.
Fibromyalgia cases have reached near epidemic proportions in the form of
U.S. Social Security disability claims, workers' compensations, and
accident litigation. As many as twenty-five percent of American
fibromyalgia patients have received some form of disability or injury
compensation. We are first to agree that the country can ill afford to
swell these ranks. But we cannot turn our back on very real suffering,
either.
Although there is no consensus as to the
source of the disease, I postulate throughout this book, hopefully in
simple enough terms, that it is caused by an abnormality in phosphate
excretion. As I have already suggested, this inherited problem appears to
me to be due to a genetic defect. Retention of phosphates eventually
interferes with energy formation in affected cells. Patients describe
their lack of energy, and cellular metabolism confirms it. If there is
insufficient energy, "nothing works right"—the very complaint
of the fibromyalgic. Pick a cell, any cell, from a system that bothers
you, strip it of its energy, and you won't find it hard to explain why the
brain, muscles, tendons, ligaments, intestine, urinary tract, and skin
have joined in an act of biochemical vandalism.
Fibromyalgia is a nearly total, systemwide
illness in most patients. The seemingly unconnected shifts in complaints
confuses physicians, who respond by referring patients to another doctor
who knows more about the "new" symptom. In the process, patients
often receive a sort of medical education as they move from specialist to
specialist.
Physicians are well intentioned, dedicated,
and skillfully trained in trying to find ways to help their patients. I
assure you that they are frequently frustrated and stymied by the
difficulties fibromyalgia presents. And then, the consensus among most of
my colleagues is that fibromyalgia is incurable. This makes it acceptable
to relieve symptoms by reliance on medications such as NSAIDs (nonsteroidal
anti-inflammatory drugs), narcotics, analgesics, and mood-altering drugs.
This polypharmacy often complicates the patient's condition by further
depressing the central nervous system, causing more fatigue and mental
confusion. The result is that patients are even less able to control their
lives than they were before treatment.
In my years as an internist and
endocrinologist, I have devoted much of my career to the diagnosis and
treatment of this disease. I have found that there is an effective, safe
treatment for fibromyalgia, and I have used it myself. Fibromyalgia
entered my own life when I was in the service in 1945. I was hospitalized
with the diagnosis of "possible rheumatic fever." All my tests
were normal, though, and after six weeks my swollen muscles and joints
cleared. Cycles of these symptoms were sporadic for years after that,
until I was in my early thirties and they returned in earnest. Since I had
no idea what was bothering me and I knew of no disease that would cause
such ridiculous symptoms, I assumed I was not geared for the tribulations
of having a private medical practice. I tried to pace myself and relax as
best I could. It was only after I began treating patients with the disease
that was later to be called fibromyalgia that I realized that I shared
their misery, and began to treat myself.
Over the years I have explored the many
facets of this illness mainly through observation and the compilation of
data from my patient-teachers. They willingly joined me in our
trial-and-error approach that lacked any other scientific credentials. It
has taken many years for me to reasonably grasp the full extent of this
illness and to comprehend just how insidious it can be.
I have used several different drugs to
treat fibromyalgia. In the past I used exclusively gout medications and,
though effective, each had certain side effects which left in limbo a
small group of patients who could not tolerate them. In 1992, the
continuing search led me to guaifenesin, a widely available medication. It
has no known side effects, is well tolerated, and has no remaining patent
and is therefore inexpensive.
I have used guaifenesin to develop a
treatment protocol that addresses the actual disturbance caused by our
defective genes, not merely its symptoms. This book is the culmination of
nearly four decades of research. I have treated thousands of patients who
have traveled from all over the world seeking relief from this enervating
disease. With treatment, the symptoms and pain reverse and disappear
completely in most patients. Other patients resume normal lives with
minimal residual problems. This is not to say that recovery occurs
immediately. Not only is it necessary to find the effective dosage of
guaifenesin, there are also other crucial factors that influence the
outcome of my treatment.
Briefly, in order for guaifenesin to work,
it must have unrestricted access to receptors in the kidneys, the little
garages where the medication must park if it is going to work. Many
ingredients in the products we use every day—lipsticks, muscle balms,
nutritional and herbal supplements, cosmetics, toothpastes, and
sunscreens—are chemicals known as "salicylates." These totally
block the guaifenesin's access to the renal receptors where it works. When
this access is blocked, none of the drugs we use are of any benefit
whatsoever. Thus salicylates must be carefully avoided.
It also must be understood that
approximately forty percent of female fibromyalgics have hypoglycemia, or
low blood sugar, and symptoms overlap those of fibromyalgia. To be
successful, treatment must address both conditions simultaneously. If this
connection is overlooked and the patient fails to make the necessary
dietary adjustments, the symptoms of hypoglycemia remain.
For these reasons, my protocol, as laid out
in this book, should be followed very carefully in order to achieve
positive results. Despite the need to watch carefully for blockers, there
is no treatment currently available that is as safe or has enjoyed such a
high level of success.
In succeeding chapters of this book, I will
discuss all of the important factors a patient must address to
successfully treat fibromyalgia, as well as share my knowledge of the
disease itself. Guaifenesin is so safe that it is an ingredient in many
over-the-counter cold and allergy medicines. It should be taken daily and
in an appropriate dosage. Patients of any age can follow the protocol,
which is designed to reverse fibromyalgia in less time than it took to
develop. This book will also discuss some coping strategies. There is no
question that the unrelenting nature of the disease, the cognitive losses,
the fatigue, and the pains are certainly reason enough to induce
depression and even suicidal thoughts. To cope with this horrible disease,
patients do need more than a pill and the instructions about how to take
it.
The guaifenesin approach to fibromyalgia is
not well known or currently widely accepted. Since we have been unable to
publish in medical journals, its fame derives entirely from grassroots
support and the militancy of the patients it has helped. The list of
physicians all over the country who use and support our protocol has grown
to about two hundred. Many more are allowing patients to use the drug, as
we constantly learn from our e-mail postings and letters from all over the
world. We have spoken to hundreds of doctors who have called our office.
Many more have written for information. My coauthor and I have spoken to
groups in many parts of the country and have delivered our message about
the success of guaifenesin to anyone who will listen. This book is, to us,
merely a means to help many more people than we could ever hope to do in
person. There is no doubt whatsoever that guaifenesin is highly effective
as long as users exercise care in following our instructions.
To the guai army: this treatment will
go forth into the world as long as we keep standing our ground. Guai
works! Each time a doctor becomes convinced of the effectiveness of
guaifenesin, he will spread the word to his other patients and their
families. We began as a small voice crying in the night. Each day we
are getting louder through the strength of our numbers. Our family
grows and the world is a better place.
—Kathy Shuller, Florida
We also know that each patient must take
charge of his or her own illness. Physicians will continue having
difficulty coping with the many hidden sources of salicylates. It is
hardly their job to walk around cosmetic counters reading labels with a
magnifying glass as we have done. That task will continue to be the
patient's problem. It is also the patient's responsibility to adhere to
the hypoglycemia diet, if that is necessary. Cheating on the diet will
harm not only you, but also affects the assessment of the doctor who is
watching you for positive results—and all the other patients who rely on
his or her knowledge.
The fact that you are reading this book
says a lot. You are still motivated to try. You have already overpaid your
dues, and we aim to help you restore your health.
I began noticeable symptoms of
fibromyalgia in July 1990. . . . My symptoms began as burning on the
bottoms of my feet and then within months progressed to my ankles,
legs, hips, and lower back. I began to get such symptoms as headaches,
muscle spasms, fatigue, and others. After seeing about twenty
different doctors, no help was found, and it was said that the pain
was all in my head. I was harassed into leaving my job because I had
not been coming to work off and on for a year and a half. . . . Then,
in July of 1993 . . . I began taking guaifenesin. . . . In the first
week or two, I had had some terribly painful days. But gradually they
got less and less painful and I began seeing a good day here and
there. My "good" days became more and more frequent. I am
currently about ninety-percent improved from using the guaifenesin
treatment for four years.
—Nancy Medeiros, Escondido, CA
I invite all fibromyalgia sufferers to
embark upon a journey to improved health. Let us be your tour directors.
We are passionate about providing you with the information you need to
regain your vitality. Realize up front that this journey is not for the
faint of heart. For most of you, the road back to good health will seem
long, with days of pain and discomfort. In the beginning, this may be more
severe than what you have suffered to date.
Guaifenesin treatment flushes metabolic
debris out of the body, and while this occurs, your pain will probably
increase. Gradually you will notice that the days of pain and fatigue
diminish, and good hours will eventually be followed by great days. You
will bounce back again with energy after an illness, injury, or hard work,
as you once did. You will be delighted that you can participate in
activities with a strength that has eluded you for years. By following my
treatment regimen to the letter, along with your doctor's advice, this is
within your reach, and you can once again live life to its fullest. My
ultimate goal is to ease the suffering and pain associated with this
illness and, through this book, I hope to reach as many of you as possible
with a viable and effective treatment solution. The best definition of
happiness I have ever heard was: "Happiness is freedom from
pain." Wipe out mental anguish as well as physical pain, and life is
a joy.
© 1999 by R. Paul St. Armand, M.D. and
Claudia Craig Marek
Excerpt posted with permission from http://www.twbookmark.com
Many thanks to Time Warner
Bookmark (Little, Brown & Company, Warner Books, A Time Warner
Company) at: www.twbookmark.com.
We appreciate their cooperation with OfSpirit.com to share this chapter of
their book with our visitors for education, entertainment and
empowerment.
Buy
this book from Amazon.com by clicking here
