Groundbreaking... Dr. St. Amand's research will permit fibromyalgia to become merely a memory." -Dr. John Willems, MD, head, division of obstetrics and gynecology, Scripps Clinic
What Your Doctor May Not Tell You About Fibromyalgia: The Revolutionary Treatment That Can Reverse the Diseaseby R. Paul St. Amand, Claudia Craig Marek
Over a decade ago, Dr. R. Paul St. Amand, an experienced endocrinologist and UCLA assistant clinical professor, published his protocol for reversing fibromyalgia based on nearly half a century of research. This book offers Dr. St. Amand's latest research on guaifenesin, an inexpensive, safe, an incresingly available medication that can help reverse the disease. The… See more details below
Over a decade ago, Dr. R. Paul St. Amand, an experienced endocrinologist and UCLA assistant clinical professor, published his protocol for reversing fibromyalgia based on nearly half a century of research. This book offers Dr. St. Amand's latest research on guaifenesin, an inexpensive, safe, an incresingly available medication that can help reverse the disease. The authors have seen symtpoms eliminated and normal quality of life restored in an astonishing 90 percent of pateints they treated with guaifenesin. Updated and revised with more patient anecdotes and a deeper understanding of symptoms, treatments, and results, readers will find:
--more information about the current treatment of fibromyalgia and what causes it
--new results from Dr. St. Amand's studies about the efficacy of guafenesin treatment
--changes in disease protocol
--discussion of pharmaceuticals in treatment
--and much more
- Grand Central Publishing
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- Hachette Digital, Inc.
- NOOK Book
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What Your Doctor May Not Tell You About FibromyalgiaThe Revolutionary Treatment That Can Reverse the Disease
By St. Amand, R. Paul
Grand Central Life & StyleCopyright © 2012 St. Amand, R. Paul
All right reserved.
The Plan for Conquering Fibromyalgia
In my fifty-five years as a practicing and teaching internist/endocrinologist, I’ve devoted fifty to the diagnosis and treatment of fibromyalgia—even before it supposedly existed. I’ve found there is only one safe and effective treatment protocol for the condition, one that I had to follow myself. The illness entered my life when I was in the armed services in 1945. I was hospitalized with the diagnosis of “possible rheumatic fever” because of my red, swollen leg joints and painful muscles. All my tests came back normal. After six weeks, everything cleared spontaneously. Cycles of various symptoms appeared sporadically over the ensuing years but with much lighter intensity. I was hit in earnest in my early thirties with many new symptoms including joint pains, but never again with the earlier swellings. I had no idea why this developed; I had never been taught about such a ridiculous condition. I assumed I was not emotionally geared for the stresses, long hours, and general tribulations of private medical practice. I tried to pace myself and relax as best I could. That didn’t help, of course, so I was convinced I needed to work harder at it! Only after I stumbled onto and began treating patients with what was later named fibromyalgia did I realize that theirs was a misery I shared. I simply began treating myself. Who else was going to do it?
Over the years, I’ve explored the many facets of this illness mainly through observation and 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 me many years to reasonably grasp the full extent of this illness and to comprehend just how insidious, infuriating, and debilitating it can be.
Part I of this book is an invitation to learn about fibromyalgia. We’re presenting you a compilation of facts gleaned from several thousand patients who have described how they’ve felt over the years. Patients don’t all come in with the same complaints and certainly not in the same order. We’ll tell you how we reassemble those statements, blend them with the physical findings that confirm the diagnosis, and channel that mix into an effective treatment.
Many of our readers already know they have fibromyalgia. Others are suspicious and in using this book will make their own diagnosis and perhaps see their doctors for confirmation. It’s certainly not like it was twelve years ago when we first wrote this book since the illness is far better known and earlier diagnosed. In the end, you’ll decide for yourself if you’re a candidate for our protocol. Even if you opt out, you’ll at least learn considerably about your illness and why it so devastatingly ravages your life.
We will also devote several pages to describing the medication we use, and what you may expect as you start treatment. So many fibromyalgics have carbohydrate intolerance that we have written a full chapter describing low blood sugar or hypoglycemia. Though there is no particular diet for fibromyalgia, you’ll grasp why you might feel considerably better by avoiding sugars and starches.
The last chapter in this part will provide a concise step-by-step explanation of our protocol. We understand that many fibromyalgics have what’s been labeled “fibrofog” and will have difficulty understanding, let alone remembering, what they’ve just read. For that reason, we’ve tried to keep our explanations and advice simple and to the point. We’ve also intended this as a reference book that can be consulted when particular symptoms arise.
An Invitation to Join Us and Find Your Way Back to Health
Most people don’t really understand fibromyalgia. Most of my friends only know that it hurts a lot, but they don’t really know what that means. Most of my doctors don’t really know what to do for me. It’s hard when the doctor doesn’t really believe me because of the pain being disproportional to the problem.
—Nina, West Virginia
IT CAN START off 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, heart palpitations, irritability, and anxieties. Symptoms come and go at first, and it’s easy to chalk them up to a mild case of the flu that never quite fully develops. You, like most individuals, tend to blame stress or overexertion for these strange little complaints.
Then, one day, you realize one part or another of your body always hurts. You’re often confused, short of memory, unable to concentrate, and you’re always stressed and feeling as if you’re at the end of your rope. You wake up tired every morning no matter how much sleep you’ve had. Your symptoms begin to worsen, and you notice new ones: depression, numbness and tingling of the hands, leg cramps, headaches, abdominal pains, cramps, constipation taking turns with diarrhea, or bladder infections. Now you notice that you can no longer sleep through the night. Sometimes pain keeps you awake; most of the time, though, you don’t know what causes the insomnia or what keeps waking you. And what causes your craving for sugar and starch? Why is it that you haven’t changed your eating habits, but you still gain weight? You’ve accumulated enough bad omens that you aren’t too surprised when bad days outnumber the good ones. Eventually you just cycle from bad to worse. When you look back, nature gave you ample warnings.
—Miki K., Hawaii
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.
You become increasingly immobile and unconsciously you stop making plans with family and friends because you don’t know how you’ll feel the next day—or the day after. Go supermarket shopping? You’re kidding. That’s just one of the many chores you’ve come to dread. At least you now have the time to review the long list of doctors you’ve visited. Each time your hopes have been dashed despite the number of tests you’ve taken and the many tubes of blood you’ve sacrificed. Sure enough: Results are normal. Increasingly, doctors are making the diagnosis despite the unrevealing tests and a sequential array of drugs; some will escort you out of the office and point to the nearest psychiatrist; a few will admit that nothing much will help you. Predictably, you’ve subsidized your neighborhood health food store by taking a variety of supplements.
Your life has entered a downward spiral into more pain, depression, and fatigue. Some of you may be nearing rock bottom. You reproach yourself for everything. Your lament includes a review of all of your inadequacies and poor coping abilities. You put yourself on trial for repeatedly letting down family and friends. You feel as though you’ve certainly damaged their lives and your own.
Wounded relationships are the most damaging side effect. You’re not the person your spouse married, and you know it. You fret and sputter about your fragilities, but you can’t seem to correct them. You’re depressed especially when you look at your children and the parental deprivations they suffer. Suicide may have crossed your mind, but you know that’s not the solution. Okay, enough already with the remorse!
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.
Fibromyalgia is prevalent in all ethnic groups in all parts of the world. In North America, it’s estimated that about 5 percent of the adult population suffer from it. Since the early cases are not being diagnosed, we feel that over 10 percent of women and 2 percent of men are affected. Using our guess, some twenty million Americans suffer from fibromyalgia, 85 percent women. Fibromyalgia is the most common disorder seen by rheumatologists. It’s further thought that chronic fatigue syndrome affects twenty-five million people. I and many other physicians consider the two the same disease. Blending the entities into one would augment the percentage of people with fibromyalgia. We’ll develop the thought later on, but we have enough observations to conclude that today’s fibromyalgia is the prelude to tomorrow’s osteoarthritis, something that affects nearly 40 percent of older people. Adding up combinations of those numbers would lead us to conclude that nearly one third of our population will, however mildly, suffer some symptoms akin to fibromyalgia in their lifetime.
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.
In 1843, Dr. Robert Froriep outlined the condition we now call fibromyalgia. He described it as “rheumatism with painful, hard places,” which he could feel in many locations on the body. Unfortunately, the word hard (swollen) is being ignored nowadays and replaced by a search for tender points. In the early 1900s, Sir William Gowers in London studied his own lumbago and symptom clusters in his patients, and dubbed this disease fibrositis. (This name stuck for the next eighty years or so despite the fact that it was subsequently revealed that the inflammation the name implies was not present.) 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). He also gave his patients a newly discovered drug, aspirin, and noted that it didn’t work very well, either.
Fibromyalgia, a coined word that suggests “pain in muscles and fibers,” has now replaced the previously popular names fibrositis and rheumatism. On New Year’s Day 1993, the World Health Organization (WHO) as part of the Copenhagen Declaration officially declared fibromyalgia a syndrome. It was described as the most common cause of widespread chronic muscle pain. Because of this action, the illness was given an ICD code (International Statistical Classification of Diseases and Related Health Problems), further validating the entity. Henceforth, doctors could credibly bill insurance companies or even declare patients disabled if worst came to worst. The WHO also incorporated the American College of Rheumatology’s 1990 distinguishing features of fibromyalgia as penned by Drs. Muhammad Yunus, Hugh Smythe, Frederick Wolfe, and others. They sought the eighteen most frequent locations of tender points dispersed over the bodies of fibromyalgics. They opted for a symmetrical distribution of nine such on each side, some in all four quadrants. The criteria they created was that at least eleven should be represented and that multiple symptoms suggesting fibromyalgia should have existed for more than three months.
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, Raynaud’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 uninformed and increasingly rare doctors who still tell patients that it’s just a catchall name for symptoms shared by a bunch of neurotic women. Were that true, I would have long since gone fishing! Despite much research and speculation, fibromyalgia remains poorly understood. It’s a complex and chronic disease that causes widespread pain and profound fatigue. Its range of symptoms makes simple, everyday tasks daunting or difficult, and often impossible.
—Cheryl K., Canada
I remember: turning on the bathroom sink and forgetting to turn it off, completely flooding the bathroom; eating half a piece of toast and throwing the other half out because it was too much work to chew it; trying to read the newspaper and reading the same sentence over and over again because I couldn’t comprehend it; lying on the couch in a zombie-type state all day long before going to bed; lying on the floor in pain. I remember not getting any diagnosis or any help at all from the medical field and being completely terrified, thinking I was going to die.
Patients with fibromyalgia generally share the same complaints since symptoms appear from widely disparate parts of the body. This makes it difficult for doctors to find the connection between a foggy brain, pain in the neck, bladder infection, brittle fingernails, hives, and diarrhea, just to mention a few. Yet they must see the relevance if they are to properly treat a patient for one illness and not several, disparate conditions.
People who enjoy semantics will argue whether we are dealing with a condition, illness, syndrome, or disease. If you are unwell, you have a condition that causes your illness. Disease suggests lack of ease. Fibromyalgics are certainly qualified to wear that name. Symptoms and findings that regularly appear together often enough are regularly grouped in medical terms as syndromes. Lucky you: Fibromyalgia is that, too. Use any of those according to your preference or simply acknowledge that you’re sick.
Many publications have listed the symptoms of fibromyalgia, most of them incompletely. Despite this, it remains a phantom illness with very few physical findings according to medical literature though not so to a trained examiner. The breadth of symptoms and unreliable physical targets greatly deter diagnosis. Though we’re closing in, there are no validating laboratory, X-ray, or scanning techniques to give physicians a sound diagnostic footing. By ignoring what we’ve preached for fifty years, fibromyalgia is still being called an “invisible disability.”
A well-conducted history, all by itself, will uncover the cyclic and progressive symptoms that point directly to the diagnosis. The recommended physical examination, a poking finger style, is far from perfect and totally falls apart in someone with a high pain threshold. We’ve far more successfully used our own technique long before the illness had a name. We make patient “maps” by sliding our hands along body surfaces looking for any swollen joint, muscle, tendon, or ligament. There are plenty of them!
—Bonnie J., Florida
I had watched my mother disintegrate. She died at ninety-four, never knowing what was wrong. No one ever explained why her muscles hurt, why she could not move her bowels naturally, why she had constant headaches, etc. She wanted to die, yet she lived to be just short of ninety-five, suffering terribly. I could not help her. I had no idea what was causing all her symptoms. Then I read Dr. St. Amand’s book. By chapter 2, I thought I knew what was wrong. And when Dr. St. Amand diagnosed my daughter, he was also diagnosing the rest of the people in my family that were suffering with FMS.
Although fibromyalgia is not a terminal illness, it is a demoralizing and debilitating one. The symptoms can be unbearable—so much so that the so-called Suicide Doctor, Jack Kevorkian, helped a few 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 struggles with her illness. “Over the years, I’ve seen my daughter experience intractable and unrelenting pain,” he said. He hated losing his only child, but “there are things in this world worse than death.” Such a solution is not acceptable—not when something can be done. Our purpose in writing this book as a new edition is to continue clarifying the only treatment that works. We will also tell you about our exciting new findings, along with those of our research colleagues.
Although few patients can tolerate doing even a token amount, many physicians advise exercise. That suggestion usually comes with the offer of chemical Band-Aids to temporarily soothe or block the ever-growing list of symptoms. Medical professionals unwittingly promote eventual disability when they prescribe ever-stronger medications that, sooner or later, further deplete energy and deepen the mental haze. They have nothing else to offer and justifiably defend the practice because they can’t sit idly by and watch people suffer.
Something bad is getting worse since long-term disability insurance companies have entered the mounting fray—and they’re hardly disinterested parties. It’s to their advantage if they can get a fibromyalgic diagnosed as a psychiatric case via the depression and the anxieties. They do have growing difficulty in finding a psychiatrist or other professional who will ignore fibromyalgia. Yet because the vast majority of insurance policies do not cover mental disability, the companies keep trying.
Since there’s a great deal of money at stake, other ploys are regularly used. They hire physicians who call the patient’s doctor and quote him or her only in part. They end up reporting what is slightly twisted in favor of their employer. In some mysterious way, patients are given a dictum: “Your disability will end on [date],” and enforce it no matter what the personal physician writes. In other words, “We won’t pay you anymore.” The implication is, “Go get a lawyer if you want to fight.” Insurance companies defend themselves by pointing out that fibromyalgia cases have reached epidemic proportions and are fully assaulting their bottom line. It’s also true that this same virus-like intrusion is plaguing our other systems: U.S. Social Security, state disability, workers’ compensation, and accelerating litigation. As many as 25 percent of American fibromyalgia patients have received some form of disability or injury compensation.
We are the first to agree that the country can ill afford to swell these ranks. Indeed, when compensation has been granted, we want to get that patient motivated to heal and reenter the workforce. Yet neither can we turn our backs on very real suffering. We see only one solution to this dilemma: Get to the sick ones much sooner, and get them well.
The basic problem for patients and physicians is that there is no consensus regarding the cause of fibromyalgia. Considerable amounts of time and money have been spent, and few experts agree on anything. However, there is an answer. The purpose of this book is to present mutual findings, those of our patients and our own. As we’ve already stated, fibromyalgia is mainly an inherited problem that can be variably triggered. We’ll discuss our theory and our recent findings that mutations exist on a few genes. Any of those aberrations can lead to faulty renal excretion and, hence, retention of a compound known as phosphate.
The vast majority of physicians are skillfully trained, well intentioned, and dedicated to their oath-driven principle of trying to help patients. Fibromyalgia is such a system-wide illness with so many seemingly unconnected, rapidly shifting complaints that doctors are understandably confused. Add to that the professional frustration they experience when they’re stymied at every turn no matter what they prescribe. They eventually respond by referring patients to another doctor who should know more than they do about some “new” symptom. In the process, patients receive a fast-track medical education as they go from specialist to specialist.
It’s also no wonder that most of our colleagues consider fibromyalgia incurable. All they can do is relieve symptoms as best they can often by prescribing the latest drug promoted by a drug company. With no known cause to treat, it makes total sense to attack individual symptoms with whatever may ameliorate them. Polypharmacy soon emerges, making use of NSAIDs (nonsteroidal anti-inflammatory drugs), various analgesics, antidepressants, sedatives, tranquilizers, and ultimately narcotics. The process is unstoppable. Patients get sicker and are forced by their medications into a far worse limbo state than before treatment. For many, the picture is truly bleak.
What do you do when fibro is causing your whole life to come apart? Your money situation has gone from bad to worse because you can’t work and you can’t think well enough to budget. You forget to make a deposit or your lights get turned off because you forgot to pay. Your husband wants to know when you’ll get better because he feels lonely when all you can do is drag yourself through the day let alone make passionate love all night. Your kids are having trouble in school and you can’t help them because you can’t think. Neither can you skate with your daughter or play basketball with your sons. You look at your laundry piled up and you can’t imagine sorting it let alone carrying it over to the laundry room. I can’t think, can’t talk, can’t feel. I feel dead.
Over the years, we’ve used several different drugs to treat fibromyalgia. In the past, we exclusively prescribed gout medications that were thoroughly effective. Unfortunately, each had certain side effects that left a small group of patients in a treatment limbo. In 1992, our search led us to try guaifenesin, a widely available medication. It is well tolerated and has no known side effects. It’s available over the counter without prescription both in long-and short-acting formulations that we’ll later discuss. Prices vary among these preparations, and despite the fact that the cost has gone up in recent years, the drug is still relatively inexpensive.
We use guaifenesin as the mainstay of our treatment protocol. It actually addresses the basic disturbance caused by our defective gene(s) and doesn’t just mask resulting symptoms. This book is the culmination of five decades of research and hands-on examinations. We’ve treated thousands of patients who have traveled from all over the world seeking relief from this enervating disease. With our approach, symptoms and pain reverse and often completely disappear in most patients if joints have not been damaged. Most individuals resume normal lives with minimal residual problems. Recovery is not immediate: We have to find the effective dosage of guaifenesin and try to clear out what it took years to accumulate. There are other crucial factors that we will stress.
In order for guaifenesin to work, it must have unrestricted access to receptors in the kidneys. These are like little garages where the medication must park and unload its contents before it will effectively work. Many ingredients in the products we use every day—pain medications, lipsticks, muscle balms, nutritional and herbal supplements, skin care products, toothpastes, deodorants, sunscreens, and even the sap of plants—contain a chemical known as salicylate. That little devil hogs all of the parking spaces in the kidney receptors and, like a union picket on strike, won’t let guaifenesin work. This was not surprising for us since all of our previous medications faced the same problem. You’ll find that we stress, again and again throughout this book, that the main demand of our protocol is that patients strictly avoid all sources of salicylate.
Approximately 30 percent of female fibromyalgics have hypoglycemia, or low blood sugar, with symptoms that greatly overlap those of fibromyalgia. For complete success offered in this book, both conditions must be addressed simultaneously. If this connection is overlooked and patients fail to make required dietary adjustments, fatigue, cognitive, and intestinal symptoms of hypoglycemia will persist even though fibromyalgia overlaps will reverse on guaifenesin.
As we will expand on in this book, our protocol must be followed very carefully if patients are to achieve the positive results we describe. You can imagine our frustration when we hear, “Oh, I tried this treatment and it doesn’t work.” We’ve heard too often from patients and physicians alike who missed the mandatory step of cleaning out all sources of salicylates. We would like to take up twenty pages of bold print with caps repeating the mantra: Don’t Use Salicylates! Enough said?
We will share our knowledge of fibromyalgia throughout this book. We know firsthand the nature of the disease: the cognitive distress, the unrelenting exhaustion, and the pains that cumulatively induce deep depression, and finally even suicidal thoughts. We know how hard it is to be understood in a healthy world, where perfectly healthy people are all around you, when friends and even family say (dare we repeat?), “You don’t look sick!” We’ve poured our hopes into yours in the succeeding chapters. We’ll try to explain simply and discuss clearly all of the important lessons you must learn if you plan success. We’ll stress what you must change, because most of you need more than just a pill to get fully reenergized and relatively pain-free. Patients of any age can follow our protocol, which is designed to reverse fibromyalgia in far less time than it took to develop the illness. Despite damage in later years from osteoarthritis that guaifenesin cannot reverse, clear thinking, full energy, and bowel and bladder functions can be restored.
Believe us, the guaifenesin protocol is not yet accepted in mainstream medicine. We have not provided the coveted double-blind study, but we now have published papers in medical journals for those willing to decipher their contents. Word of our protocol is spreading thanks to grassroots support of our healing patients. Thereby, many physicians and other practitioners are using the protocol, but we don’t know how many are enlisted in this growing infantry. We frequently get e-mails and some letters from people who’ve either recruited their physicians or been urged by them to adopt our protocol. In addition to face-to-face, hands-on training with doctors who’ve come to us, Claudia and I have spoken at medical meetings, patient-doctor mixed groups, guaifenesin support groups worldwide, and even participated in occasional television and radio interviews to deliver our simple message. During these events, we regularly extend invitations to join us in fighting the battle. In short, we’ve been preaching to anyone who’ll listen. Whether through this book or in person, we keep repeating, “Guaifenesin works, but we plead with you to follow our instructions!”
I have never contacted an organization or a website for any reason so I’m not sure what I’m doing. I just hope you receive this. I do not know what else to do. I’m divorced, single mother of two daughters, sixteen and ten. I’ve been through some extremely stressful years while trying to work, raise my girls, and go to numerous doctors, some of which claim they specialize in fibromyalgia. I don’t know what to say next except I’m hoping you can help me. I’m forty-two years old, and for the past few years, I feel like I’m seventy-two. I’m always exhausted, experiencing pain, irritable, dizzy, issues with my bowels, skin problems… I’ve always lived my life feeling that no matter what was handed to me, my glass was always half full, but now it feels like my glass is empty. I want my life back. I want to be the person I was in the past.
Why preach to the choir? You surely know that you must take charge of your own illness. Physicians will never spend the time to look for salicylates in products other than prescription drugs. They’re not going to shop at cosmetics counters using magnifying glasses to scan labels. No one will hover nearby to slap your hand when you reach for a piece of pie if you’re hypoglycemic. But look at it this way: Not reading labels or cheating on the diet will obviously harm you, but will also discourage your doctor, who’s observing you and hoping for your success if only to acquire a method for treating other patients. Even practitioners who’ve feigned disinterest and only allowed that guaifenesin can’t hurt you will become attentive as you begin to feel better. Since you’re reading this book, you must still be motivated to try again despite all of your previous setbacks. That speaks volumes. For each one who picks up this book, we know that there are some who’ll put it down because it “looks too hard” and “I’m too sick to try this.” It is truly your loss.
—Anne L., Minnesota
Eleven years ago this evening I took a deep breath and swallowed my first half-pill of guaifenesin. I had been following all the standard treatments—antidepressant for pain and sleep, pain meds for pain, sleeping pills for sleep, following a very rigid schedule of waking and sleeping and activity every day, avoiding stress whenever possible, and meditating for half an hour morning and evening. But I got sicker and sicker anyway. At night, I would hear somebody scream in my sleep, and wake up to realize it had been me, crying out in pain when I changed position. I was sure within six months I would lose my job and never be able to work again. I was planning to commit suicide before I became totally incapacitated. But I had decided that first I would give the guaifenesin protocol a try.
We invite all fibromyalgia sufferers (and their loved ones) to embark on the journey to improved health. Let us be your tour directors. We’re passionate about providing you with the information you need. We’ve both done it, paid our dues, and are eager to share what we know. Realize up front that this trip is not for the faint of heart. For most of you, the road back to good health will seem long, with days of discomfort living in a cognitive wasteland. In the beginning, this may be more intense than what you have suffered to date. But the destination is gold-laden; grasp for it.
This treatment is designed to flush the body of the metabolic debris that’s clogging up your energy-producing factories, tiny mitochondria buried deep inside all your cells. While that’s happening, your emotional and physical pain will most likely increase. But with time, you’ll notice symptoms easing and you’ll soon find that you have some good hours, eventually better ones, and ultimately great days. You’ll actually bounce back after an illness, injury, or hard work, just as you once did. Most welcome is the ability to participate in activities with the energy and enthusiasm that have eluded you for years. By following our treatment regimen to the letter, along with your doctor’s advice, this is all within your reach. We want you to resume living your life to the fullest. The best definition of happiness we’ve ever heard is: “Happiness is freedom from pain.” Wipe out mental anguish and constant pain, and life is a joy.
The Fibromyalgia Syndrome
An Overview of Symptoms and Causes
Fibromyalgia is real, Fibromyalgia hurts, and Fibromyalgia intrudes into lives and relationships in a real way. The two basic challenges that face a newly diagnosed patient are the following: learning about your illness so that you understand it and then explaining it to everyone else in your life so that they do as well.
—Claudia Marek, Fibromyalgia Is Real
WHAT IS FIBROMYALGIA? Twenty-seven or so years after the condition was given a name, the medical community and patients are still looking for that answer. My coauthor, Claudia, asked her son, Malcolm Potter, that question when he was about ten years old. His response was, “It feels like all my muscles want to throw up!” That intuitive response still seems as descriptive as anything else that’s been offered. Another one is: “the irritable everything syndrome,” coined by Dr. Hugh Smythe of Toronto, Ontario. From ten-year-old boy to prominent researcher—two phrases that pretty well cover it, wouldn’t you say?
Fibromyalgia is different from other illnesses. If we were to describe thyroid diseases, diabetes, or rheumatoid arthritis, for example, we could easily recite their distinguishing characteristics. Most conditions have a single set of lab tests to help confirm the diagnosis. Often, one major organ or gland is the culprit. That’s not so with fibromyalgia, because it doesn’t pick on just a single type of cell or limited body part. Instead, it shows up with myriad seemingly unrelated symptoms in endless combinations. At first glance, the only thing these complaints seem to have in common is that they coexist in a single human being. Symptoms don’t neatly fit into diagnostic categories. Perversely, they spill profusely over the borders that define any particular medical specialty. You just can’t quite tuck it in. It remains elusive, treacherous, troublesome to pin down, and taxing to treat.
Though there is no set pattern, fibromyalgia assaults enough systems to raise a warning flag to the alert physician. The same amalgam of characteristics drives patients to seek help from whatever specialist they deem best suited to handle the chief complaints. Specialists, by definition, work in somewhat limited spheres. That narrow focus may not allow a panoramic view where all the symptoms are displayed. Thinking within their particular fields, they find it difficult to expand perspectives to include minutiae into an all-encompassing diagnosis. So they end up treating just a few symptoms as if those represent the entire disease. Therefore, irritable bowel syndrome, interstitial cystitis, vulvar pain syndrome, chronic fatigue syndrome, chronic candidiasis, and myofascial pain syndrome are treated as separate entities though they represent facets of fibromyalgia. Often, physicians in family practice, internal medicine, and rheumatology, who more routinely perform complete patient evaluations, are more adept at identifying the many outlying symptoms.
I’ve already described the environment in which I practiced in my early years. I was visited by patients with numerous complaints, who had seen many doctors, and had taken many medications. They still weren’t well, but certainly more frustrated. Their family doctors had examined and tested them, often in memorable detail. The conclusion: “Everything’s normal; it’s just your nerves.” Family and friends eventually echoed those words and accepted the fact that their loved one was just a neurotic who was cracking up under stress. I equally fell into that trap because I was taught that methodology and had no evidence to contradict it.
What we were all missing was the connecting thread among patients. Glaringly obvious was the sheer volume of complaints. Sure, many patients found it difficult to pinpoint exactly when their symptoms had begun. Most had great trouble discerning the order in which they appeared. They wilted under questioning as if they were being cross-examined and a wrong answer would result in condemnation. Migraines, fatigue, depression, muscle aches, dizziness, nasal congestion, gas, diarrhea, breaking nails, numbness, bladder infections, and on and on. Shouldn’t someone have caught on sooner? All of them were repeating the same things!
Some mornings I would wake up and feel so lethargic it was all I could do to make it to work. For several years, I’d attributed my muscle pain to the few fender-benders that I’d been in. I’d thought the migraine headaches were hereditary. And I would tell myself I’d caught a “bug” when the dizziness and fatigue became a problem. The strange thing was the symptoms seemed to get worse as time went on, not better, despite the treatment I’d received from traditional M.D.s, chiropractors, holistic practitioners, acupuncturists, masseuses, and herbalists.
About a year ago, I was so frustrated I rattled off all my recurring symptoms to my [previous] doctor and demanded, “I’ve been here before with these problems. What’s wrong with me?” To which she replied with annoying frankness, “I don’t know.”
Not unlike other illnesses, the severity and impact of fibromyalgia differ from patient to patient. Some are able to lead relatively normal lives. Often they live with a number of irritating symptoms for years when suddenly the hesitation is over and the full-blown, unrelenting disease hits. Others become considerably debilitated early on or even homebound. There are those who feel well until traumatized by an accident, surgery, extensive dental work, infection, or emotional stress. They single out those events as triggers that precipitate their illnesses. In most cases, when taking a more detailed history, we can elucidate many, much earlier complaints. But for the vast number of people, symptoms sneak up insidiously, wax and wane, gradually intensify, and eventually never go away.
In addition to the physical complaints, the vast majority of patients also have difficulties with memory and concentration—cognitive difficulties that have been nicknamed “fibrofog.” This embarrassing entanglement often takes a heavier toll on patients than do the aches and pains. It raises fear of serious brain deterioration, and begs reassurances that it isn’t the embrace of premature Alzheimer’s. You can appreciate the alarm invoked by the neurological involvement upon reading the following description.
—Cyndi S., Arkansas
I sit at a computer at work with a headset on, answering calls from people about computers of all types… I have to solve their problems, at the same time “teach” them. Many times I have found myself not knowing who I am talking to (man or woman?) and what we were talking about. It is like just waking up from a dream. So I have to keep notes of what I’m doing on my calls, or just plain ask the person to repeat what they just said. This will eventually cost me my job… I don’t know what my future holds. I’ve gotten in my car and forgotten how to turn the lights on, or where the windshield wipers are. Sometimes I can laugh about it, later. But it’s getting more frequent and I’m not laughing anymore.
At the beginning of my medical career, I knew of no disease that could encompass the weird symptoms expressed by this group. The sheer number of people reciting the same litany of complaints made it ever more likely there was some undocumented disease. The depth of cycling and rapid shifting from good to bad days didn’t quite fit into the description of neurosis. I also noticed that sick days were not always related to tensions and stresses at home or work. Neurotics are neurotic and don’t usually experience great days out of nowhere. The fact that my patients were inexplicably better at times despite living under identical conditions made me more attentive to the repetitious nature of their symptoms.
There was no doubt that these patients were emotionally upset, frequently at the end of their rope. They complained of varying degrees of pain, at least some stiffness, affecting many parts of their body. That seemed pretty tangible and at least represented specific locales for me to start probing. I kept trying to find some palpable abnormalities in the designated, painful areas. Eventually I did feel them: very detectable swellings scattered pattern-like everywhere on these people. I soon made the connection that worse-pain days meant worse-everywhere complaints. It wasn’t long before I realized that the entire symptom cascade was interrelated. It became obvious that pain hurts whether it stems from an emotionally floundering brain or from a gut in spasm, a burning and irritated bladder, or a headache. It was indeed one great big mess! I was literally feeling my way and reinforcing my ever-growing conviction that everything was linked and had to have a single cause. What on earth could it be?
THE SYMPTOMS OF FIBROMYALGIA
By and large, fibromyalgia symptoms can be grouped into the following categories: central nervous system, eye-ear-nose-and-throat, musculoskeletal, dermal, gastrointestinal, and genitourinary. There are a few other, isolated problems that don’t fit easily into any classification other than miscellaneous. We’ll look at all of those affected areas and present you with a tableau of fibromyalgia. Each of these biological systems earns its own chapter later in this book. We’ll separate them just to make the full ramifications of the disease more comprehensible. But please remember, they are all very much connected, all stem from the same cause, and are all equally restored by one medication, guaifenesin.
Cerebral—Fatigue, irritability, nervousness, depression, apathy, listlessness, impaired memory and concentration (fibrofog), anxieties and suicidal thoughts, insomnia, frequent awakening, and nonrestorative sleep.
Musculoskeletal—Pain and generalized morning stiffness in the involved muscles, tendons, ligaments, and fascia that may arise from such structures surrounding the neck, shoulders, upper and lower back, hips, knees, inner and outer elbows, wrists, fingers, toes, and chest as well as from injured or old operative sites. Pain can assume any form and intensity, such as throbbing, burning, stabbing, stinging, grabbing, or any combination of these. Joints may be swollen, red and hot, or just painful as in the temporomandibular joint (TMJ). Numbness of the extremities or face and tingling anywhere arise from contracted structures pressing on nearby nerves. Facial and head pains spring from the neck or skull bone connections (sutures). Tiny parts of muscles often twitch, and the restless leg syndrome makes it impossible to find a comfortable position. Patients also complain of feelings resembling electrical impulses in their muscles, and a feeling of general weakness. Leg and foot cramps are common.
Dermal—Undue sweating; various rashes may appear with or without itching: hives, red blotches, acne, tiny red or clear bumps, blisters, eczema, seborrheic or neurodermatitis, and rosacea. Nails are often brittle, or they peel or chip. Hair is of poor quality and either breaks or falls out prematurely, sometimes in bunches. Strange sensations are common, including cold, heat (especially of the palms, soles, and thighs), crawling, electric vibrations, prickling, hypersensitivity to touch, and flushing that is sometimes accompanied by a somewhat pungent and irritating sweat.
Gastrointestinal—Irritable bowel syndrome, leaky gut, spastic or mucous colitis, fibrogut. Transient nausea, gas, pain, bloating, constipation alternating with diarrhea, mucus in stools, and sometimes hyperacidity with reflux.
Genitourinary—Pungent urine, frequent urination, bladder spasms with very low (suprapubic) abdominal aching, burning urination (dysuria) with or without repeated bladder infections or so-called interstitial cystitis. Suspected vaginal yeast infections without the usual cottage cheese discharge are mimicked by vulvodynia (vulvar pain syndrome), which includes vulvitis (painful, irritated, burning, and sometimes raw vaginal lips), vestibulitis (same symptoms deeper into the opening), vaginal spasms or cramps, burning mucous discharge, increased menstrual-uterine cramps, and painful intercourse (dyspareunia).
Head-eye-ear-nose-and-throat—Headaches that are labeled “migraines” when they’re severe enough. Others, less intense, could be in the back of the neck and head only (occipital); front only (frontal), which are often erroneously blamed on the sinuses; one-sided only (hemicephalic); or generalized (entire head); dizziness, vertigo (spinning), or imbalance; dry eyes as well as itching and burning with or without a sticky or gritty discharge (sand) first thing in the morning; blurred vision; excessive nasal mucous congestion and postnasal drip; painful, burning, or cut tongue; abnormal tastes (bad or metallic), scalded mouth; brief ringing (tinnitus) or lower-pitched sounds in the ears; ear and eyeball pains; sensitivity to light, sounds, and odors. Late-in-life-onset asthma and hay fever are sometimes related.
Miscellaneous—Weight gain; low-grade fever with night sweats; lowered immunity to infections; morning eyelid and hand swelling from water retention that slowly gravitates to the lower extremities and by evening stretches tissues, impinges surface nerves, and causes the restless leg syndrome.
—Bonnie J., Florida
It took years to happen. It was not until I turned sixty-three that I became totally aware of the fact that my body was breaking down. Before that I had plenty of indications that my health was disintegrating; eighteen years of chiropractic adjustments, visits to many nutritionists, and a kitchen cabinet filled with at least twenty different homeopathic remedies purchased from people who charged me for their alternative practices. I tried that route because my mom, who had similar symptoms, had had no success with regular doctors. Researching FMS took me to Devin Starlanyl’s book Fibromyalgia and Chronic Myofascial Pain. I was relaxing on the beach, reading her book, and saw a diagram of the tender points. I found all eighteen on me. And then I knew what I had.
Ever since the 1840s, when “painful hard places” were described in certain patients with rheumatism, doctors and patients have been fascinated by them. These sensitive spots are now referred to as tender or trigger points. The latter designation is used for the so-called myofascial pain syndrome. The official American College of Rheumatology (ACR) criteria for the diagnosis of fibromyalgia are based to a degree on finding tenderness in eleven out of eighteen predetermined sites when appropriate, finger pressure is exerted. Such spots have been mapped, poked, prodded, biopsied, injected, and scanned. They’re frequently assessed using a contraption called a dolorimeter, a spring-loaded device that measures the pressure load when a patient cries out or flinches.
When questioned, most patients confirm tender areas throughout their bodies. Most are located on muscles, tendons, and ligaments. Pain complaints move around a lot, but tender sites don’t vary all that much. In reality, the most painful spots of the day take precedence and drown out the others. Swelling changes with fluid content, and pain is determined by how much pressure squeezes neighboring nerves. That’s why small swellings can sometimes hurt much more than the bigger ones. Pain sensitivity is largely inherited and varies in a spectrum of tolerance.
The tender-point concept has always seemed arbitrary to us and to a growing number of rheumatologists. What do we do with someone who has all the symptoms of fibromyalgia but only nine tender points in the locations we’re supposed to check? What if a patient has limited numbers in the predetermined sites, but has twenty in undesignated areas? People with high pain thresholds may feel no tenderness or only negligible sensitivity anywhere on the body. That’s not uncommon, especially in athletes. The obvious question is what to do with a nontender individual who’s loaded with swollen tissues, has all of the fatigue, cognitive, bowel, and urinary tract symptoms of fibromyalgia? The lack of tender points is what is used to shift such persons out of the proper diagnosis and into the realm of chronic fatigue syndrome.
We find the the tender-point concept is unduly limiting. After taking a patient’s history, we begin our search for any involved tissue in a process we call mapping. This manual examination turns up many large and small spastic zones, sometimes involving an entire muscle bundle. These areas are distinctly swollen, not always tender, so we simply call them the lumps and bumps of fibromyalgia. We record each of these, noting its location and size on a sketch of the body. (See chapter 7 for a description of our technique and a blank body map.) Some patients can barely be touched; others can be prodded with little concern. Our examination doesn’t rely on what a person feels: They’ve already told us about their pain distribution. We are purely objective and record only what we can feel without added input from the patient.
WHAT CAUSES FIBROMYALGIA?
Given the broad spectrum of bodily functions and tissues affected by fibromyalgia, it’s only natural to wonder: What kind of pathology would affect so many, diverse systems of the body? Can brittle nails and migraines really be connected? Why haven’t we found abnormalities in the customary diagnostic tests? Such issues have perplexed physicians and patients alike. Those of us who’ve studied fibromyalgia for years still don’t agree on the answers, but luckily the enigma is breaking up, as you will learn.
There are controversies in the medical community about the nature of fibromyalgia. I’ve seriously studied the proposed concepts, and I disagree with them. I’ve long ago joined in and expounded my own theory. Luckily, I have a lot of data: firsthand experience and much gleaned from basic science, as well as published results from our own research. The current treatments being offered don’t hold up well and mainly mask the developing disease. Before delving into details, here is my authentication. I’ve gathered firsthand evidence examining more than ten thousand patients and from their follow-up visits. I add to those numbers daily and I’ve examined every single one of them personally. For the past ten years, I have only treated fibromyalgia. Therefore, I hardly feel pompous saying “in my experience.” What we’re about to recite makes the most sense from the perspective of physiology, biochemistry, and clinical medicine. We continue expanding on a concept that fits, and a treatment that works.
Here we ask you to bear in mind that a theory is nothing more than a set of assumptions based on many accumulated facts. Encountering a theory, immediately recognize that it undoubtedly contains errors and oversights. This edition of the book will tell you how we are improving it by actively delving deeper into the biochemical and genetic factors we’ve always thought were at the root of fibromyalgia. We’re totally satisfied that the illness responds well to guaifenesin. Our recently published papers give a glimpse into the effects of the drug. The truth is revealing itself at last. Please remain patient with us. Our theories are undergoing rigorous testing and so far so good!
We wish we could choose a more descriptive name for the disease that would fit all of its symptoms. Fibromyalgia is a Latin term meaning pain in muscles and fibers, but that’s clearly inadequate to define the rest of the illness. Chronic fatigue syndrome, the second most commonly used moniker, focuses mainly on brain exhaustion and malfunction. For most patients, both labels apply at various times during their illness but can’t be easily combined into one classification. At times, the symptoms of one condition are prevalent and tilt the scale to one or the other diagnosis. However, it just takes a careful history and appropriate examination to make it very clear that we’re dealing with one and the same condition. It’s merely a matter of tissue sensitivity, disease intensity, and individual pain threshold.
For these reasons, fibromyalgia badly needs a new name—not that this is likely to happen. We proposed dysenergism syndrome (faulty energy) in our first edition. Since then, a learned Greek colleague invoked his native language to suggest energopenia, meaning “dearth of energy.” That would cover it well, but it’s not being accepted. Indeed, our treatment restores vitality by lifting the biochemical blockade we’re about to describe. That done, the symptoms of the illness recede. I use myself as an example. At age eighty-four, I’m able to do some things I couldn’t do in my thirties. Sadly, however, much as we’d love to change the name, at this time we’ll go along with common usage and stick with fibromyalgia.
THE MALFUNCTION JUNCTION OF FIBROMYALGIA: A BIOCHEMICAL THEORY
What in the world could be the metabolic difficulty that springs up to cause such a body-wide failure? The stack of symptoms we’ve listed above strongly signals that many bodily functions have gone on strike and often at the same time. You and your doctors may have been just looking at the surface effects of fibromyalgia. There certainly has to be some type of fundamental breakdown. Aches and pains arise from spasms; the brain is obviously too tired to remain functionally alert. But why do the bladder, skin, intestinal tract, eyes, nose, throat, and more structures all join in? All of those parts are nothing but a bunch of cells that should work harmoniously. There must be some altered chemistry behind all this—a truly basic connection.
We believe that fibromyalgia is caused by an excess of a specific biochemical substance that enters individual and intercommunicating cells. This process begins at birth and accrues until the body’s safety nets are overstretched and become porous. The time from birth until the symptoms appear varies with the individual’s genetics. We think there’s an inherited malfunction in a specific area of the kidneys that allows the buildup of something in the body that, in normal people, is excreted. We strongly suspect inorganic phosphate. There is a saying in medicine that either too much or too little of a given element will interfere with function. Not surprisingly, cells work within a very narrow range for each of their chemical contents. Logically, to preserve itself, the body distributes surplus concentrations among a variety of cells. However, there is a critical level that, when exceeded, induces a malfunction—in this case, an energy deficit.
Every bodily function needs energy—not only in moving, running, exercising, and speaking, but also simply growing hair, breathing, digesting food, fighting illness, and, especially, using the brain. Eighty to 90 percent of our food must be converted to fuel. All cells produce a currency of energy known as adenosine triphosphate (ATP). Every chore we’ve just listed and whatever else a body does all depend on this vital compound. That’s even true for anything else that’s alive: plants, bacteria, and all animals large and small. This process involves extremely complicated biochemical mechanisms. Many of the compounds and enzymes that play significant roles in energy production are already known.
In order to understand how fibromyalgic cells malfunction, we need to study how energy is produced. In properly functioning cells, the concentration of all the substances integral to energy formation is meticulously maintained. Tiny power stations called mitochondria, where raw materials are processed, are where our story is now focused. These are present in all cells of the body, but they’re stacked especially high in brain and muscle cells. They’re complex little factories that convert 80 percent or more of our foods into adenosine triphosphate—three phosphates (tri) hooked onto a single molecule of adenosine. When a cell must perform a function, it rips one high-energy phosphate off adenosine, and expends it for the chosen activity. Such chemical reactions provide most of the energy required by living tissue. Almost magically, electrons are released in these bursts and are somehow directed to the right place to do the right job at precisely the right time. Then it’s somewhat like the gasoline in your car’s tank: ready for burning. It’s also like plugging in an electric cord: The energy’s been there all the while, just waiting for a signal to connect. Electrons flow through cells, charge up various enzymes, and run electrical currents in tissue “appliances.” In healthy bodies, cells seem to have an almost unlimited supply of ATP. In fact, within thousandths of a second, cells can produce new energy from a series of reservoirs.
So how does an energy deficit occur in fibromyalgia? We know that this is the problem. It had been suggested much earlier, but a study reported in 1989 actually measured ATP levels in tissues of fibromyalgics. Two Swedish researchers, Drs. Bengtsson and Henriksson, found a 20 percent reduction in muscle biopsies taken from such sites. They sampled bits from the swollen and tender trapezius, a muscle located at the top of the shoulder. Adjacent, normal tissue was also biopsied and studied but showed no similar ATP deficits. A few years later, low ATP levels were found in red blood cells of affected individuals. These studies, along with the more technical magnetic resonance spectroscopy that can probe inside living cells (see the Technical Appendix), support our theory of inadequate energy as the cause of fibromyalgia.
We like having our theory validated, but the question still arises: Why this depletion? What has interfered so stressfully to suck out ATP? The body is superbly geared to prevent such an occurrence, since major losses would mean cellular death. Obviously, that doesn’t happen in fibromyalgia. Something must be lacking or have entered and accumulated to gunk up or idle the generators.
It’s well known in physiology and biochemistry that phosphate excesses in the inner core of mitochondria, the matrix, slow down these power stations. Eventually, this not only eats up surplus ATP, but slows basic production as well. Blocking ATP generation means there won’t be enough high-energy phosphates available for the cell to do any real work beyond simply surviving. Cells with the highest activity are the first hit and worst affected by this shortage. The more cells are pressed into service, the more seriously are they affected. So it’s a small wonder that brain and muscle are the heaviest hit! Optimal function is permitted only when energy is sufficiently replenished. Is any of this news to a fibromyalgic?
But phosphate is not the only problem. It can’t pile up indiscriminately inside cells without causing permanent damage. Because each phosphate ion carries two negative charges, electrical equilibrium can only be sustained by a counterbalancing (buffering) with an element that sports two positive charges. Enter calcium, the preferred companion for phosphate. Whenever and wherever phosphate goes, so does calcium.
Calcium normally sits quietly inside storage bins, known as the endoplasmic reticulum, and mitochondria, or lurks just outside the cell’s wall. When a stimulus arrives, the command is given to the endoplasmic reticulum to release stored calcium into the fluid chamber of the cell, the cytosol. The amount released is just enough to perform the desired task, no more and no less. If more is needed to amplify the signal, liberal amounts can be imported from the readily available external pool. Focus on the fact that calcium is the final battery terminal—the ultimate messenger that commands any cell to “Get going and do what you’re told!” (See figures 2.1 and 2.2.)
Calcium won’t stop its demands for performance as long as it sits in the cell’s liquid interior, the cytosol (known as the sarcoplasm in muscles). So the poor cell must strive to keep working as instructed until it’s relieved of duty. To interrupt go-ahead signals, calcium must be either pumped back into storage within the endoplasmic reticulum, or totally pushed out from the cell. (Enzyme pumps exist that are used just for this purpose.) As you’ve learned, any function performed by the body uses up ATP for energy; the pumps need the same motivation. Some 40 percent of cell energy is expended simply by moving calcium in and out of internal storage or extruding it from the cell. Low ATP in fibromyalgia permits calcium to sit too long where it’s no longer needed. Simply put, there’s not enough energy to fully man the pumps, and insufficient calcium is being baled out. As a result, tissues affected are totally strained and continue to overwork day and night to the point of exhaustion.
As we’ve stated, the numerous lumps and bumps we palpate are found predominantly in muscles, tendons, ligaments, and on the outside of a few joints. These areas are in a contracted state—they’re working twenty-four hours a day. Only calcium out of storage sitting in the cytosol (sarcoplasm) of a cell can force that.
It’s not difficult to accept this premise, since patient distress points directly to the core of the basic abnormality. There isn’t anything else we can surmise that would cause such steadily contracted tissues. There is an overwhelming tension state as a result of this condition. Readers with fibromyalgia know without being told how many seemingly unrelated parts of the body are affected. “My whole body is tired, it aches, my bladder is irritated, my gut doesn’t work, my brain is addled, and even my fingernails keep breaking.” The extent of these common complaints should alert my profession to the fact that the malady is a fundamental assault at the very heart of life. The widespread metabolic mayhem can all be explained by inadequate sources of ATP.
We tend to focus on the brain deficits and musculoskeletal pains of fibromyalgia and ignore the facts that they, too, are symptoms of a larger problem. Multiple studies have revealed problems all over the body in the tissues that produce various molecules, hormones, and neurotransmitters. In other words, journals have reported on multiple abnormalities including low test results for growth hormone, insulin-like growth factor, serotonin, certain amino acids, and free urinary cortisol. These and numerous other results have still failed to produce a single accurate diagnostic test for fibromyalgia despite the dedicated efforts of many researchers.
Energy deprivation is certainly at the root of this illness. No matter what findings pop up in the future, the shortage of ATP will continue to explain the disturbance. Many capable M.D. and Ph.D. investigators are looking for a culprit and findings are finally emerging, things new to this edition. Any new theory would need to propose a similarly debilitating disturbance, serious enough to destroy what was once a well-functioning body. But only restoration of normal ATP production can give back to patients their mental and physical energies.
In genetics, polymorphisms speak of multiple variations in a single gene. We’re now certain that there is more than just one of these variations scattered in various chromosomes in fibromyalgia. We defended this position early on because we had treated several patients under the age of five, but also many individuals who displayed neither the symptoms nor characteristic findings until later in life—even one who began at the age of seventy-four. That last observation suggested the presence of one or more less-destructive genes. The addition of kinder (recessive) genes to less gentle (dominant) ones permits all sorts of combinations (permutations), which in turn determine how intensely and when the illness is first expressed. If both parents have such defects, their mutual children will, too.
In our first edition, I erroneously predicted that the X chromosome would be the likely site for the major genetic defect. When we wrote a book about childhood fibromyalgia, Claudia realized that prior to puberty we had equal numbers of boys and girls (ninety-three to ninety-four, respectively). So why is it that, postpubertally, women make up 85 percent of the fibromyalgia population? It dawned on us that bones and muscles require huge amounts of phosphate to sustain rapid growth. That timing put to rest the myth of “growing pains.” They occur mostly in the preteen years of relatively slow growth and usually disappear during the spurt that signals puberty. Testosterone-fed male tissues beef up and sustain lifelong phosphate requirements. Such buffering offers men partial protection from fibromyalgia, but does not eliminate them as genetic carriers.
The human genome has now been mapped, and though there are yet slots to fill in, we and others have identified some mutations. So many people have fibromyalgia that geneticists might at first consider the variations as normal subtypes. We and our patients remain involved in an ongoing study with a premier research institute in Southern California, the City of Hope. I personally suspect that our adverse traits encode defective enzymes that are normally dedicated to precision control of phosphate or other ions. They would be less responsive and would neglect the retention or elimination of phosphate that should accommodate to bodily needs. Initially, the defects would still allow the body to tuck retained excesses into receptive sinkholes, particularly in bones. The daily retention would be minute, but we believe that “tuckability” is eventually exceeded. Other cells must take up the slack even though they get sick doing it.
Had enough of the technical explanations? It’s time to discuss our treatment for reversing fibromyalgia.
How and Why It Works
I will consider changing my medications, my physical therapies, and even my exercise routine, but I will not consider going without guaifenesin, nor will I take anything that might block its effect. It’s too important to my well-being.
—Devin Starlanyl, author of The Fibromyalgia Advocate
AS OFTEN HAPPENS in medicine, I stumbled upon the treatment for fibromyalgia quite by accident. I was young and naive, but I was lucky. It all began with a patient’s chance observation.
In 1959, long before our illness had been defined or officially named, a patient came to see me on a revisit. He suffered from gout and for two years had taken the only drug available at that time, probenecid (Benemid). He was feeling fine but unexpectedly said, “Hey, Doc, does this drug take tartar off your teeth?” He then scraped off bits and pieces of tartar (clinically referred to as dental calculus) and flicked them onto my office floor. Though I was not particularly pleased with his newly discovered skill, I responded the way a poised physician should. I harrumphed appropriately and said, “I don’t think so.” Yet my curiosity was piqued, and I began to reflect on this finding. I awakened two nights later asking myself what this flaking might indicate.
My knowledge of dentistry was limited so I consulted a textbook that had a page or two devoted to dental calculus. I learned that the mineral backbone of tartar was 75 percent calcium phosphate in a chemical structure called apatite. Tartar develops from saliva, which in turn derives from the serum of blood. Water, all varieties of minerals, proteins, abundant calcium, and phosphate are secreted from blood plasma into the salivary glands. These glands modify and manufacture their own proteins, such as mucus and digestive enzymes. They then mulch and concentrate such things with the above elements to make saliva. My search taught me that salivary phosphate concentrations were four times that normally found in blood. The level of salivary calcium, on the other hand, is just about equal to what’s inside the bloodstream. Chemically speaking, this makes for a very unstable solution. We multiply the calcium level by that of phosphate and produce a number called the solubility constant. Sufficient instability caused by too much or too little of either element allows crystals to form deep under the gums and on the teeth; that’s what is called tartar.
Though dental calculus can wreak havoc on the gums, teeth, and oral hygiene, that was all the information I could find. Not everyone creates dental calculus, and some people produce the stuff at variable rates. My quest was to learn what was metabolically different about tartar formers. I began by looking more closely at people with gout, since it was a gout medication that let my patient chip tartar off his teeth.
I’d been interested in gout and suspected that there was more to the illness than merely joint pains and swelling. I reread the original description written by Thomas Sydenham almost three hundred years before, in 1683. He described gout as a disease with joint pain and one manifested by “great mental torpor,” “suffusion of the sinuses,” generalized flu-like aching, and malaise or fatigue, along with many other complaints, all in the dramatic language of his day. In other words, there were system-wide effects that were often overshadowed by the pain and throbbing of the joints.
Gout—A metabolic disease unrelated to fibromyalgia. Diagnosis is helped if a high plasma uric acid level is discovered. Aspiration of a gouty joint will show needle-like, uric acid crystals. Gout is treated with two types of medications: uricosuric drugs such as sulfinpyrazone and probenecid, which cause the kidneys to excrete excess uric acid; and more commonly used nowadays, allopurinol or febuxostat, which inhibit the formation of uric acid. Gout has many symptoms, but the most diagnostic is a red, hot, or swollen joint usually located from the knee down. It is inherited, and ten times more common in men than in women and then only after menopause.
Uric acid—A waste product from the breakdown of nucleic acids in body cells; it is also produced in the digestion of some foods. Most uric acid passes by way of the kidneys into the urine and is excreted, although some is passed through the digestive tract. When the kidneys do not excrete uric acid properly, high levels can build up in the body. This can lead to gout or, to a lesser extent, kidney stones.
Gout is usually inherited, and we know the cause. In susceptible individuals, accumulations of uric acid crystallize and form deposits in certain joints. Sydenham’s description of systemic symptoms preceding a joint attack made me wonder if there might be a gout syndrome. In this scenario, people would have all of the preliminary symptoms of gout without an acute arthritic attack. The condition would appear in cycles owing to minideposits in certain tissues such as the brain and the gastrointestinal tract. Muscles would be slightly affected and joints spared altogether until very much later in the disease. An elevated plasma uric acid level would be the only way of alerting a physician about such a syndrome.
I soon found a few patients whom I thought might have these pregout symptoms: cyclic bouts of fatigue, irritability, nervousness, depression, insomnia, anxieties, loss of memory and concentration. They also described generalized, flu-like aching and stiffness (mainly in muscles), headaches, dizziness, numbness and tingling of the extremities, and leg cramps as their most prominent complaints. Indigestion with a sour stomach, gas, and flatulence completed the picture. Blood tests revealed higher-than-normal levels of uric acid (urate). When I treated these patients with gout medication, their uric acid dropped to normal. I was exhilarated by the fact that their symptoms also disappeared. Oddly enough, although patients quickly felt better, they still relapsed off and on: They suffered less often and intensely during each subsequent attack by staying on the medication. I’d always known that lowering the blood uric acid actually precipitated acute attacks of gout. As uric acid crystals are pulled from joints, they cause the pains just as they did going in. My gouty-syndrome patients indeed suffered reversal symptoms similar to those they experienced before treatment. It was exactly the same as Sydenham had described—except, I must stress, that there was no joint involvement. This was surely gout at its inception, before there was gout!
Flushed as I was with success, my confidence in my new “gout syndrome without gout” was soon shaken. Here came another group of patients who had all of the symptoms suggesting my new creation. Yet no matter how many times I tested, they never showed an elevated uric acid. Their aches and pains emanated from the entire musculoskeletal system and only mildly in joints. They had tenderness and swelling in tendons, ligaments, and especially muscles, structures that are not usually affected by gout. I decided to try gout medication anyhow. Oddly, they began recycling symptoms the same as did the high–uric acid group. I grew suspicious that they were clearing something different out of affected tissues since uric acid wasn’t in the picture. They improved in the same way: Gradually, cyclically, and progressively, they accumulated more good than bad days; ultimately, some went on to complete clearing and also remained well if they stayed on the medication. In short, results were identical in all three groups: those with the classic symptoms of gout (red, hot, and swollen joints); those without joint symptoms—the gouty syndrome; and now this no–uric acid condition. The same drug was effective for all three, but what in the world was the cause of this third thing?
I tried to concentrate on what was different about the last group. They suffered from many aches and pains, but their fatigue was more overwhelming and constant. Women greatly outnumbered men whereas gout predominantly affected men. (Gout in women is almost nonexistent before menopause.) I thought it unlikely there was a connection with gout or the uric acid group except in the similarity of symptoms even though probenecid worked to reverse both conditions. My sleeping brain must have been mulling this over, and I woke up one night with the thought: Could there be an entirely new disease that acts like the gouty syndrome and is somehow connected to my patient’s tartar?
I found it difficult to stop thinking about this idea. There existed no name for such an entity. Fibrositis had fallen into disuse and fibromyalgia wasn’t yet born. I, too, had dismissed these patients, considering them hypochondriacs. I’d been well taught about these psychological misfits, the anxiety neurotics. In school, we were drilled to look for unbalanced hormones, unhappy marriages, empty-nest syndrome, inadequate upbringing, or just plain social maladjustment. When I lingered to elicit all the symptoms, I became fascinated by how similar their stories were. If psychosomatic, how could all these women invent closely identical complaints? There were pain, fatigue, emotional and cognitive defects, spastic colon, cramps, numbness and tingling of various parts of the body, and insomnia. And that’s the short list.
They didn’t know each other; they represented every ethnic group; they came from all over the world and from widely disparate socioeconomic demographics. Yet their recitation of symptoms seemed choreographed! Some were stoic, some slightly militant, but most just psychologically whipped. Their lips twitched and they sometimes sobbed a bit when one by one I extracted their unpredictable complaints. They usually recalled good and bad days in the earlier phases of their disease. Most remembered what happiness was before they succumbed despite having the same marriages, same children, ugly dogs, stress, and anticipated fun times. I knew it was ludicrous to continue in my belief that all of this was due to their nerves, no matter what psychiatry books iterated. I knew I might as well accept it: There existed a prevalent, unidentified, unexplored, but very real disease.
When I first used the gout medication, probenecid, I had variable success. The first two patients began the cyclic reversal I had learned to expect in the gouty syndrome. My enthusiasm was soon dashed when I failed with the next three patients. After some initial teeth gnashing (mine), something told me to try a higher dosage. I did so, and the rewards were swift: All three patients began the hoped-for reverse cycling. It now seemed even more likely that there actually was a tartar, or apatite crystal, syndrome—as I first named it. Equally obvious was the fact that uric acid had no part in the condition, since I could never detect abnormal levels in any of these people.
I found progressively more patients who fit the mold. So many, in fact, that I knew I was looking at a very common and major illness. This was a debilitating disease that inexorably consumed energy and ultimately destroyed the quality of life. Vast numbers of these patients soon swelled my practice; I learned a great deal from them. Besides learning its parameters, I soon realized the illness was familial. The oldest related their own horror stories with a longer litany of complaints. Many of them were now contending with the added discomfort of osteoarthritis.
I was routinely touched by the years patients had suffered. Nuances in their stories made each one different, but left no doubt they were ill with the same sickness. It would have helped to have had such a thing as an electronic tablet to record the number of prior physician visits, tests, surgeries, and oddball diagnoses. Any of my readers can add to this list: “It’s a bad menopause,” “you’re depressed,” “inner ear disorder,” “defect in your neurotransmitters,” “rheumatoid arthritis,” “migraine syndrome,” “early lupus,” or “multiple sclerosis.” It was only a matter of time before most women were told: “It’s all in your head; you need a psychiatrist.” Some had seriously considered suicide, so compromised was the quality of their lives. They were frustrated and guilt-ridden about not being able to care for their families. They fiercely resented being different from other people. When I told them they suffered from an honest-to-goodness illness, I had to hand many of them the Kleenex box.
—Mary Lee, California
I have had fibro since I was a little kid but I did not know that I was ill—at least not beyond the allergies, migraines, etc., that I had accepted as part of my family heritage. Our first child came when I was twenty-one. It did not take me long to realize that I was different from other young mothers. They got more done than I did. They were not sick all the time like I was with almost weekly migraines and multiple bouts of bronchitis. Even when I was not sick, I did not get to the end of my work before I crashed, just out of steam. Even with all of that, I often thought I could cope if I could just think straight, but I couldn’t. I would forget things that I knew. I lost important things. I couldn’t remember people’s names. My husband became so disgusted with my behavior that he avoided me more and more rather than trying to help. He worked odd shifts and I was pretty much left alone to tend to myself and the kids… My husband was slow to believe the diagnosis. It was just another “excuse” for substandard behavior as far as he was concerned.
New uricosuric medications appeared over the years: Anturane, Flexin, and Robinul. Each acted at a well-defined kidney level to increase uric acid excretion and was effective for gout. Strikingly, each also worked for our gouty syndrome and for fibromyalgia. But remember, fibromyalgia is not connected to uric acid. Several articles and books have printed that I believe uric acid is involved. I have consistently denied that I ever believed such a thing. There are similarities, but something other than uric acid is being extruded. Whatever genetic defect manifests at that location, it is mitigated by guaifenesin as well as the uricosuric drugs.
With treatment, many patients began flicking tartar. That wasn’t much help to us since too many healthy people can do the same. Nevertheless, those early observations had put me on the right track. The successes forced me to suspect that the body was improperly handling either calcium or phosphate. Patients also commonly described chipping and peeling of their fingernails in cycles. Nail minerals are predominantly calcium and phosphate—the same as tartar. I theorized that nails were also cycling and depositing similar excesses at their roots. Compare this to the concentric rings of trees created as they grow. They reflect fibromyalgia and make defective layers during adverse cycles.
Calcium was not the problem. Our gout medicines worked on the negatively charged urate part of uric acid (sodium urate). Calcium, unlike urate, is an ion with positive charges. If I could eliminate calcium, logically I could suspect its companion in tartar, phosphate. There were ample biochemical reasons that pointed to phosphate. Like urate, it carries negatively charged ions. Calcium tablets sometimes helped patients feel slightly better. It bound chemically to phosphate in the intestine, decreased its absorption, and helped eliminate it into the stools. Kidney reabsorption or excretion into the urine is handled in about the same area as uric acid. I wish we could treat fibromyalgia so simply, but calcium just isn’t enough help.
Although the drugs I was using to treat fibromyalgia were successful, they did have side effects. Sulfinpyrazone could raise stomach acidity enough to cause ulcers. Probenecid is a sulfa drug, and if allergy develops, the resulting hives could last for weeks. Robinul causes dry mouth or eyes (dangerous in glaucoma), nausea, abdominal pain, and increases fatigue or feeling spacey; it may also cause major urinary retention in men with an enlarged prostate.
Due to these limitations, I was always on the lookout for a more effective, better-tolerated medication. In 1991, more than thirty years after I began my initial research, I got lucky. My nurse’s ten-year-old son, Malcolm Potter, had been on our treatment for fibromyalgia since the age of seven. As he grew, he needed somewhat larger amounts of his medication, sulfinpyrazone (Anturane), to continue his reversal. As mentioned above, this drug causes hyperacidity and gastric upsets in 8 percent of patients. As my young patient grew taller, we finally raised his dosage to a level too toxic for him, and sure enough, his stomach began to hurt. I didn’t want to try the other medications since I worried about their particular side effects. Remember, this was a kid who would need some drug possibly for the rest of his life. So I intensified my search for a safer substitute.
Luckily, it wasn’t long before I recalled a little clipping about another drug that could ever so slightly lower uric acid. I was able to confirm this in a newer edition of the Physicians’ Desk Reference. The effect of this medication on uric acid is far too weak to successfully treat gout. But you’ll recall that anything I’d used so far with that effect had also worked for fibromyalgia. A bit later, I came upon a corroborating article in an old copy of the Journal of Rheumatology.
The FDA-approved use of guaifenesin is for producing and loosening mucus in various respiratory infections. Thus, it’s found in many cold preparations. It originated somewhere around 1530 as a boiled tree bark distillation called guaiacum and, believe it or not, was widely used for rheumatism. It was even used to treat gout. In 1928, a medical paper extolled its virtues for treating growing pains in children. It also relieved several symptoms we would now recognize as fibromyalgia related. Guaiacum was later purified to guaiacolate, and made its first appearance in cough mixtures about seventy years ago. It was eventually synthesized and about thirty-five years ago was pressed into tablets and named guaifenesin. Its original use isn’t completely ignored, however. In the PDR for Herbal Medicines, Guaiacum officinale remains a liquid medication indicated for rheumatism.
The standard guaifenesin dosage for creating looser phlegm in bronchitis, asthma, hay fever, nasal and sinus congestion, is two tablets (1,200 mg) in the morning and two in the evening (2,400 mg per day). For many years, guaifenesin was a prescription drug in the form of 600 or 1,200 mg tablets. The drug is now available over the counter and is sold in differing strengths without prescription, making it widely accessible and affordable. It’s available in 200, 300, and 400 mg strengths, as well as combined short-and long-acting 600 or 1,200 mg tablets sold under the brand name Mucinex. There are liquid forms with 100 and 200 mg per teaspoon, which we’ve used for children who could not swallow tablets. We’ve also recommended the sprinkles, which are in capsules that can be opened, allowing minigranules to be disguised in applesauce for kids. Guaifenesin is quite well absorbed from the intestinal tract at rates that differ among preparations.
—Physicians’ Desk Reference
Guaifenesin (gwy-FEN-e-sin) is an expectorant that thins mucus and helps to loosen phlegm. Guaifenesin is quickly absorbed from the gastrointestinal tract, and is rapidly metabolized and excreted into the urine. Guaifenesin is also known to lower uric acid levels. No serious side-effects have been reported.
To learn more about guaifenesin, go to such sources as www.drugs.com or bring it up in your computer through your search engines. Your pharmacist could copy a printout for you. But the newer Physicians’ Desk Reference (PDR) book no longer describes it because it is over the counter.
Let’s go back to my willing test subject, Malcolm, who had been off his original medicine for some time because of his irritated stomach. I surmised that I’d see some kind of reversal symptoms within a few days if guaifenesin was effective. Luckily for all of us, sadistically for Malcolm, on the second morning after beginning guaifenesin, he stumbled out of his bedroom moaning, “Mom, I can’t walk—even the bottoms of my feet hurt!” So pervasive were his stiffness and aching that we knew we’d struck therapeutic gold! Indeed we had stumbled upon the safest and most potent weapon against this terrorist disease. Since guaifenesin has no significant side effects, his symptom onslaught could only mean that we were purging his fibromyalgia. Unconvincingly for him during his full-blown torture, he was to lead us all back onto a safer road to recovery!
HOW DOES GUAIFENESIN WORK ON FIBROMYALGIA?
Do you remember our discussion in chapter 1 about the lumps and bumps of fibromyalgia? We find them on every single patient with the disease. We transpose each onto a body caricature, or map, for future tracking. These swollen places are for the most part tender. They’re located in tendons and ligaments, but mostly in muscles. Ninety to 95 percent of the swelling is simply water that has collected under considerable pressure. We suspect this fluid has been sent into cells because of the presence of a slight excess of phosphate, calcium, and probably other constituents such as sodium and chloride. Bodies dispatch water to these areas and dilute these ions, keeping them from crystallizing inside cells. This keeps the tissue accretions in solution. Cells survive, but at the expense of losing some normal functions. The worst part of this process is that swelling presses on nerves and they transmit messages of discomfort to the brain, the only organ that can feel pain. Only when each ion is tucked into safe storage areas is some of the water allowed to leave. That actually reduces the size of the bump and somewhat eases pain.
Why did his getting worse actually tell us that Malcolm was improving? The answer is reversal pain, the opposite of what happens when the disease develops. The body can’t pull concentrates out into more diluted areas because this would defy some chemistry and the body’s dictum of equilibrium. When reversal begins, water has to reenter the ailing cells, wherever clearing is about to start. That extra fluid again causes swelling and pressure on nerves to renew pain messages. When guaifenesin initiates purging, the newly retained fluid reverses direction and is extracted from cells and takes some of the phosphate, calcium, and other excesses that had accumulated. Expanded cells shrink down a bit and ease some of the miseries of fibromyalgia.
When cells do their cleaning, they sweep the rejected phosphate and its fellow travelers back out into the bloodstream. Varying with the amount of waterborne material being extracted, the blood undergoes a miniflooding with the same debris it just tried to hide. This time the phosphate flows into the kidneys for excretion. But the kidneys can’t immediately process all of that sudden inflow. You’ll recall our theory that fibromyalgia occurs because the kidneys are sluggish when it comes to expelling phosphate. Since the urine is the only elimination route, the waste backs up waiting its turn for elimination. The blood is impatient and, meeting renal resistance, responds by stashing minideposits into temporary staging areas all over the body. Muscles absorb up a fair share, which causes generalized, flu-like aching. The brain also cooperates and stores enough debris to intensify fatigue, cognitive impairment, irritability, depression, anxiety, and insomnia. It’s as if the disease were heading entirely in the wrong direction. In fact, it seems worse than ever, since purging is moving detritus out of cells at least six times faster than it had been allowed to enter. The difference this time, however, is that the kidneys are now working in the right direction, thanks to guaifenesin. They’re in overdrive at full capacity trying to eliminate the unacceptable excesses. As you’d expect, symptoms of fibromyalgia worsen until the kidneys catch up.
What pours out under treatment are the accumulated chemical energy blockers that induced fibromyalgia. Guaifenesin will pull out some excess phosphate in small batches with help from the kidneys. During this purging, along with the above symptoms, patients also describe unpleasant tastes, scalded mouth, bad breath, burning perspiration and urine, as the body dumps the acidic phosphate into all bodily fluids. Even tears and vaginal secretions may sting. During this leaching-out period, people often notice small amounts of particulate matter or bubbles in the urine. Each cycle ends when that’s all that can be done metabolically for the time being.
Between reversal cycles, relative rest periods follow. They could last for just a few hours, sometimes days, or even weeks. During more peaceful periods, it’s still likely that some reversing is going on at a subliminal level. What patients experience varies greatly since so much depends on individual pain thresholds and ability to cope. Only one thing is sure: It soon becomes clear that the next attack is under way. Over time, these symptom onslaughts gradually diminish in intensity and frequency. The severity of symptoms lessens, and patients gradually get ever closer to restoring their health. Reversal symptoms, however intense, should reassure the patient that guaifenesin is working because the drug has no known side effects. Given to a normal individual, even in large amounts, no symptoms appear. These attacks and body map improvements tell us that restoration is under way.
My daughter was diagnosed with FMS after two years of searching for what was wrong. That year she missed over seventy days of school. Then I found the information about guaifenesin. I took it to my doctor, who had heard of it and didn’t know if it would work. Together we followed the directions.
Now, for the first time in over five years, my daughter was able to go on a vacation and not be afraid of the pain. She was able to go to school without fear and went outside and played with her girlfriends! When school started this year, teacher after teacher stopped her and asked her what had changed over the summer; she looked so good and different! She is thirteen years old and in junior high… to be pain free and to be able to go out on the soccer field with her friends without the fear of the pain has been amazing.
We commented earlier that we’ve had five totally different chemical compounds that worked for fibromyalgia. They had nothing in common except for where in the kidney they exacted their effect. Each urges the kidney to excrete a lot or a bit of uric acid. We’ve already explained that fibromyalgia has nothing to do with urates. I had measured the urinary output of phosphate, calcium, and urate before and during treatment using probenecid in the early years of our protocol. Later we appropriately retested patients using guaifenesin and got virtually the same results. We found a 60 percent increase in phosphate excretion and a lesser (30 percent) unloading of oxalate and calcium with both drugs. But whereas the gout medications significantly increased uric acid excretion, only a minimal discharge occurred with guaifenesin.
How does guaifenesin purge phosphate from the body? It’s somewhat like opening a spigot that lets the kidneys drain out the problem. Think of your home water system. You open the tap, and water flows out of the faucet from the pipes that connect to the main line, which pulls from a larger source. Ultimately, the reservoir to which your pipes are connected gets lowered by the amount you’ve used at home, no matter what is the distance between the two locations.
We can use this analogy to explain our version of fibromyalgia. Those of us with one or more defective genes have otherwise perfectly normal kidney function. We think the problem arises because our inherited trait produces some slightly crippled proteins called enzymes. Healthier, top-quality specimens normally allow well-controlled opening of the spigot whenever the bloodstream offers up waste for renal filtering. Our theory suggests that affected kidneys badly direct the fate of inorganic phosphate (symbol: Pi). Our genetic malfunction causes fibromyalgia because it doesn’t let the tap open fully; phosphate still leaks out, but somewhat sluggishly. There may be considerable daily variability, but that back-damming effect will eventually accrue Pi and redistribute it throughout the body. Different tissue susceptibilities determine which ones will best scoop up the excess phosphate.
Metabolic by-products are blood-borne to the kidneys for filtering. No-longer-needed substances and water are extracted to form urine. Major interfaces of blood and kidney occur at places called glomeruli. Flushing through such structures are surplus minerals, chemicals, and water in concentrations almost identical to those of the blood—with some notable exceptions such as inorganic phosphate (Pi). Huge amounts are absorbed from our foodstuffs and mainly used to make cellular energy. But like most other body ingredients, there are leftovers. Our activities exact tolls in the power molecules locked inside cells in the form of a chemical makeover named high-energy Pi. A lot of it is recycled, but there are some losses that get extruded from cells and ultimately into the blood. That excess baggage is what’s sent downstream to the kidneys for possible elimination.
The kidneys are the command centers when it comes to designing urine. At some point, cells lining the walls of the renal tubules make decisions. They solicit nerve or hormonal advice before releasing filtered products such as phosphate into the bladder. Impulses can arrive from multiple sources requesting urgent need for extra Pi. Tubules are capable of reabsorbing it into the circulation for distribution wherever needed. Cells lining the millions of kidney tubules face the developing urine stream on one side, and the blood capillaries on the opposite end. That’s where choices are made concerning many urine-borne products including Pi. They can open side gates to retrieve Pi and slither it through to the blood side for retrieval. Depending on the incoming signals, they can also keep them closed, deny access, and thereby direct partial or total excretion. You can see in figure 3.1 how this works.
So phosphate has two ways to go. Both are through the bloodstream’s capillary walls. The first system shoves it directly into the fluid that’s about to become urine. The second extracts it from the blood straight into the tubule-lining cells from one side and ejects through the other side into the urine. While this sounds like an unnecessarily duplicated effort, these two venues are under different yet synchronized control. Phosphate concentrations are sensed; nerve and hormonal suggestions are respected to please the body’s requirements. If you’re soaking in Pi, get rid of it. You need a bit extra? We know how to get it, and we’ll absorb some for you. It sounds simple, but these activities count on enzymes responding correctly to the body’s needs. In fibromyalgia, it is probable that one or more of the involved enzymes are genetically defective or malformed. This would fit with our theory: Fibromyalgics just can’t get rid of enough phosphate.
Now we can choreograph the whole scene. Cells work so we can live, and require a huge amount of energy in the process. Most of our food is expended to create ATP in the many mitochondria that sit inside each cell. Once formed, this adenosine triphosphate can flip off attached, energized phosphates one at a time and make metabolic things happen. It’s highly energy-expensive to keep body parts functioning. Normal wear and tear of cells adds more waste phosphate into the dietary surpluses not earmarked for immediate use. All of that is dispatched to the kidneys for the sorting out we’ve just discussed.
The body won’t tolerate Pi accumulation in the blood, because it’s a reciprocal to calcium. This means that when phosphate rises, calcium must fall. There are four parathyroid glands in the neck that won’t permit such an imbalance. They pour out hormones that protect calcium levels. So phosphate can’t escape in the urine, and it isn’t even allowed to linger in the bloodstream. Now the quandary: In some predetermined pecking order, certain tissues must accept phosphate as inmates and help clear the blood. Bones are the most adept at tucking it in, but eventually they become saturated and refuse to soak up any more. Muscles and sinews should help, and they do. The process drives inorganic phosphate back into cells willing to accept the responsibility. At some point, Pi excesses slow down the mitochondrial generators and energy production starts lagging. It’s chemically necessary that water enter affected cells to keep incoming phosphate and its fellow traveler, calcium, in proper concentration. Sodium and chloride surf along to permit such mandatory dilutions. Those cellular visitors cause swelling and produce the lumps and bumps of fibromyalgia. In turn, that squeezes nerves and sends distress signals to the brain. There, the problem is interpreted to express the symptoms of fibromyalgia: pain, burning, crawling, tingling, and numbness. The brain itself isn’t immune to the process so add fatigue and cognitive impairment. We’ve sketched this sequence in figure 3.2.
Excerpted from What Your Doctor May Not Tell You About Fibromyalgia by St. Amand, R. Paul Copyright © 2012 by St. Amand, R. Paul. Excerpted by permission.
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