Living Well with Chronic Fatigue Syndrome and Fibromyalgia

What Your Doctor Doesn't Tell You...That You Need to Know

Mary J. Shomon

• Publisher: William Morrow Paperbacks
• Year: 2009
• ISBN:
  9780061748554
• Topic: Medicine
• Subtopic: Diseases & Allergies

From the author of Living Well With Hypothyroidism, a comprehensive guide to the diagnosis and treatment of chronic fatigue syndrome and fibromyalgia--vital help for the millions of people suffering from pain, fatigue, and sleep problems.

Recent studies indicate that 3 to 6 million Americans suffer from fibromyalgia--a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and multiple tender points. This terrible condition is often accompanied by chronic fatigue syndrome, a persistent and debilitating sense of exhaustion that is estimated to affect 800, 000 Americans--twice the number of people with multiple sclerosis. Yet there are no official blood tests of diagnostic procedures that can confirm that yes, you definitely have these conditions, and in fact, a whole segment of the medical world doesn't even believe these two diseases actually exist. In addition, the few books that are on the market tend to focus on single solutions or eschew conventional and pharmaceutical approaches, which could alienate readers who use conventional medicine in whole or part. In her trademark accessible, easy-to-follow style, patient advocate Mary J. Shomon integrates the latest findings regarding these misunderstood conditions. Highlighting the pros and cons of the antibiotic, metabolic/endocrine, hormonal, musculoskeletal, and many other approaches to treatment, Shomon explores the fads and viable alternatives--both conventional and alternative--and provides helpful, clear solutions to help sufferers of fibromyalgia and chronic fatigue syndrome.

At various points since 1995, Mary J. Shomon has been diagnosed with chronic fatigue syndrome and fibromyalgia. Since then, she has transformed her health challenges into a mission as a nationally-known patient advocate. She has worked for more than 20 years in writing, advertising, public relations, and communications and is the founder and editor-in-chief of several thyroid, autoimmune, and nutrition newsletters, as well as the internet's most popular thyroid disease website, www.thyroid-info.com.

1

Introduction

Better than a thousand useless words is one single word that gives peace.

—The Dhammapada

As I started the process of writing this book, I was confused and overwhelmed. For several years, I had been studying everything I could find about chronic fatigue syndrome (CFS) and fibromyalgia. I read more than fifty health and medical books, a thousand medical journals and magazine articles, and two thousand personal e-mails from people with CFS and fibromyalgia. I heard from dozens of experts from around the country. And as I sat down to write, I struggled with a fundamental challenge: All the books, articles, experts, and patients rarely agree on the answers to even the most basic questions.

What are the symptoms of CFS or fibromyalgia? Are CFS and fibromyalgia actually the same disease? How do you get diagnosed? Why would some doctors suggest that CFS and fibromyalgia are just “fad” illnesses, and all in your head? Do you need blood tests or not? What are some of the triggers? Is it stress? Nutritional deficiency? Toxic exposure? Infection? Can you ever get better? What treatments are best? Should you follow a holistic, natural, or alternative medicine approach?

Or forget holistic, should you go totally conventional and take prescription antidepressants, prescription sleeping pills, and prescription pain relievers? Is it all really about an underlying endocrine or thyroid imbalance, and are hormones the answer? Is the solution the guaifenisin protocol, or is it detoxification? Is exercise helpful or harmful? What about your diet and vitamins? Could psychotherapy be the solution? Could you be dealing with a virus, a bacterial infection, a stealth pathogen? Should you have surgery or is the real answer yoga, cranial manipulation, or trigger point therapy?

One patient, BJ, struggled to get a doctor to take her seriously.

I find doctors simply are not interested in this illness. There are no dramatic treatments so there can be no heroes.

While there may not be any heroes, there are some experts who are standing out, taking risks and offering more than just the standard fare, when it comes to CFS/fibromyalgia treatment. But whom should you believe? Should you listen to Dr. Teitelbaum, or Dr. Cheney, or Dr. St. Amand, or Dr. Lowe, or Dr. Bell, or any one of the other CFS and fibromyalgia experts? Should you listen to your own G.P., or your rheumatologist, or your internist, or your infectious disease specialist, or your chiropractor, or your holistic M.D.? Will you be able to find a doctor who cares about you?

Just trying to sort through this all gave me a huge headache. (Headache, by the way, can be a symptom of CFS and fibromyalgia, depending on which expert you consult!) But in my case, headache was a symptom of information overload and confusion.

I know that you can relate to what I’m saying. For those of you who are in the throes of CFS or fibromyalgia right now—whether you’re struggling to get a diagnosis, you’ve just been diagnosed, or you’re a long-term traveler on the road to better health—a headache is the least of your problems. Not only are you suffering a variety of symptoms, which may include total and utter fatigue and exhaustion, difficulty or impossibility concentrating, and debilitating pain, among others, but on top of it all, if you’re going to feel better, you have to take charge of your own health and learn all about CFS or fibromyalgia yourself! And all this while you struggle with conditions that, despite their very real and demonstrable existence, carry an outdated stigma not seen with other conditions. With CFS and fibromyalgia, there will always be doctors, family members, and friends who dismiss you as lazy or suffering from a psychosomatic illness, or who assume that if you’d just pull yourself together, you’d feel better.

You probably feel confused, as I was, by all the conflicting information, and overwhelmed by all the options you have and choices you have to make. And more than most conditions, CFS and fibromyalgia require an educated, involved, and empowered patient.

The hardest part is that you need to tackle this huge challenge at a time when you’re most likely feeling sick, exhausted, fuzzy-brained, and in pain.

Talk about a wrong time to try to delve into a complicated medical topic! Learning about and tackling chronic illness may seem like more than you can handle, especially when it may be overwhelming to think about performing even the most basic activity, such as getting out of bed or brushing your teeth.

You may also be surprised at what a stigma CFS and fibromyalgia still have. You’re going through it, so you know from firsthand experience that these are very, very real conditions. You didn’t dream this up, wish it upon yourself, or develop some psychosomatic syndrome, and you can’t just think it away, buck up and feel better, or “get over it” by sheer determination.

Many people—including some doctors—still think that chronic fatigue syndrome is the yuppie disease, and that somehow you bring it upon yourself. The problem is, people who think you bring it upon yourself also seem to think that you can easily will it away.

Others think that rather than real, diagnosable diseases, CFS and fibromyalgia are actually psychosomatic and due to laziness, malingering, or some inherent emotional or character weakness.

This is amazingly discouraging when it’s coming from friends, family, and coworkers, much less your doctors and practitioners.

It’s hard for some people to believe you are sick, and this is one of the most discouraging aspects of CFS and fibromyalgia. You probably appear well, even if you are quite ill and unable to function. The fact that these conditions are not visible contributes to the lack of respect you may experience from others.

Jessica, a CFS patient, said:

One of the insidious things about this disease is that you look ok, that no one knows how bad things are inside your body. How can life be so glorious, and the body so full of betrayal?

Even if you have the support and faith of those around you, there’s a fear and despair that seems to accompany CFS and fibromyalgia that is not common in many other conditions.

You may feel as if the onset of your illness was a form of death, or at a minimum, a line that clearly divides your life into “before” and “after” CFS/fibromyalgia. Many people I talked to described these diseases as “monsters” they were battling. They described losing themselves and having pain and fatigue—both physical and emotional—that no one else except another sufferer seems to understand.

And as time goes on, it becomes clearer to you that many people simply won’t understand. What do you say when someone asks you how you are?

Joyce explains the frustration:

It is a conundrum. I give mixed signals to others. Others who know me, whom I do not see frequently, but who know my condition ask me how I am. If I say good, fine with a cheerful voice they then make [the] assumption that I am better, and say “So you are better, you are over it?” Then I say no, that [it] is the same. And I wonder, do they think it odd or wrong for me to say fine? Can a quad in a wheelchair say she is fine? Of course, and no one expects her to get up from her wheelchair. When I say I am fine I have to explain more, and then the next question, “So they haven’t figured out what it is yet?” As though if they had I would be better? Who ever gets better from chronic disabling conditions? People get worse or at best stabilize over time and it is considered just a tad indiscreet to ask someone with breast cancer, not cured, if they now have it in their bones. We don’t do that. And yet with CFS there is this endless curiosity.

Bottom line?

I wrote this book to fast-forward you through the process that I’ve already gone through. If you had the energy and time, you could read the same fifty books and thousand research articles that I did, talk to dozens of experts, and correspond with thousands of fellow patients. But I guarantee you, if you did, you would come to the same conclusions that I did:

• You’ll discover that there isn’t a smoking gun—you won’t find one particular trigger common to everyone who develops CFS or fibromyalgia. We’re all different, and we develop CFS and/or fibromyalgia in different ways, for different reasons, as the result of different triggers.

• You’ll see that there is no definitive list of guaranteed symptoms for either condition. There are some basic symptoms that are seen in many—but not all—patients, and many other symptoms that affect only some people. Your symptoms will likely be different from those of someone else with CFS or fibromyalgia. Everyone doesn’t fit a mold, so your case of CFS or fibromyalgia may not resemble mine, and mine won’t resemble the next person’s.

• You’ll find out that people get diagnosed in very different ways—and there’s no single surefire way to get diagnosed. Your experience of getting diagnosed is likely to be quite different from mine. You may prefer to go the route of extensive testing. I may prefer to give my medical history, then move right into focusing on treatments, based on interpreting my history and symptoms.

• You’ll find out that you can’t find one particular type of doctor or specialty that is most likely to successfully diagnose or treat your CFS or fibromyalgia. The type of doctor who ultimately diagnoses you may not be able to diagnose me, and vice versa.

• And as for treatments, you’ll learn that there isn’t any over-the-counter supplement, prescription pill, surgery, or miracle cure-all that will easily and quickly restore you to good health. What actually works is an approach customized to each person’s particular health situation.

It could sound bleak, but I assure you, it’s truly not! Because you are reading this book.

And while there are no solutions that apply to everyone, there are effective solutions—but you have to find the unique combination that works for you!

I’ve put together the information you need to work out your own unique plan for living well. And I know the condition you are dealing with is quite real. And I know you’re exhausted, and in pain, and I take it very seriously, because I’ve been there, too.

Creating your unique plan means you must be aware of and knowledgeable about your options, and fully prepared to participate in creating a plan for your own care and treatment. That is where Living Well with Chronic Fatigue Syndrome and Fibromyalgia will help.

While most books, organizations, and even physicians promote one particular theory and treatment approach, Living Well with Chronic Fatigue Syndrome and Fibromyalgia takes a look at the bigger picture, giving you the tools, resources, and information you need to create that personalized plan for living well with CFS or fibromyalgia. Tools and features include

• A detailed plan for getting diagnosed, including the tests you might ask for in some cases to aid in diagnosis

• Descriptions of risk factors and symptoms of CFS and fibromyalgia, and a comprehensive and detailed checklist you can use to aid in self-evaluation and diagnosis with your physician

• An overview of the various theories behind CFS and fibromyalgia—from infections, to hormone imbalances, to nervous system imbalances, to musculoskeletal problems, to sleep disorders, to nutritional deficiencies, and more. You can quickly become familiar with the many different schools of thought.

• Information to help you review and evaluate the many different options you can pursue in terms of treatment—from the most conventional therapies to the most alternative mind–body approaches

• A patient-oriented look at the popular protocols, including Dr. R. Paul St. Amand’s “guai” protocol, Dr. Jacob Teitelbaum’s interdisciplinary protocol, and more

• A look at the roles of hormonal treatments, antibiotic and antifungal treatments, dietary changes, detoxification, allergy treatment, stress reduction, attitude, lifestyle, mind, body, and spirit in treating fibromyalgia and CFS

• Detailed information on how to find and work with the right practitioners

• Guidelines on how to develop a comprehensive treatment plan

• A comprehensive Resources section with organizations, books, magazines, Web sites, and support groups that can help

It can be difficult, frightening, and frustrating to try to live well with CFS or fibromyalgia. But it can be done.

At the time when you need it most, this comprehensive guide will introduce you to these conditions, help you get diagnosed, and then provide you with the tools you need to carefully craft your own wellness plan and confidently carry it out with the aid of your practitioners.

My Own Story

Before I continue, I thought it might be useful to explain how I became so interested in CFS and fibromyalgia. To start, I’m not a doctor, and I’m not a health professional. I have an international business degree from Georgetown University, and a background in public relations and communications consulting. But along the way, my own frustrations with health care and efforts to live well were transformed into a career in patient advocacy and health writing.

My own health adventures actually began in December of 1978, when at seventeen years of age I had my first serious illness. I was in the midst of a busy, exciting few months of dating, working part-time, and attending the first half of my senior year of high school. Over the Christmas break, I came down with a terrible case of what seemed like bronchitis, but it quickly became clear that this was no ordinary bronchitis. I slept for ten-hour stretches, awaking only to take a sip of water, and then falling asleep again for hours. After a trip to the doctor around the New Year, I was diagnosed with a particularly debilitating case of mononucleosis. My white count was so high that the doctor said it would be many months before I would recover and could return to school. He told my mother to plan for me to be in bed and out of school for the entire second half of the school year.

I was horrified. This was going to put quite a crimp in my plans for dating my steady boyfriend, going to our spring proms, graduating from high school, and getting ready to start college that fall. The doctor said there was absolutely nothing besides rest that could be done for my mono. The most exciting time of my life was turning into a total disaster.

My mother was determined to avoid disaster, however, and after consulting with a holistically minded friend, came home with a copy of Adele Davis’s book Let’s Get Well. The book included recommendations, including a host of vitamins and an antistress protein drink concoction to be taken multiple times a day, which it was claimed would help with mononucleosis. I took my vitamins and drink several times throughout each day and night, followed a high-protein diet, and rested. A week later, I felt my energy returning. Two weeks later, I felt almost normal. A trip to the doctor three weeks after diagnosis, along with a blood test, confirmed...

Table of contents

• Cover
• Title Page
• Dedication
• Contents
• Foreword
• 1: Introduction
• 2: Understanding Chronic Fatigue Syndrome and Fibromyalgia
• 3: Risk Factors and Symptoms
• 4: Risk Factors and Symptoms Checklist
• 5: Getting Diagnosed
• 6: The Role of Infections
• 7: The Immune System
• 8: Endocrine System, Hormones, and the Hypothalamic-Pituitary-Adrenal Axis
• 9: The Brain, Pain, the Nervous System, and the Heart
• 10: Sensitivities, Allergens, and Toxins
• 11: Nutritional Imbalances and the “Guai” Protocol
• 12: The Musculoskeletal Connection
• 13: Sleep, Biopsychology, and Stress
• 14: Finding and Working with the Best Practitioners
• 15: Creating Your Plan
• 16: Finding Hope
• Resources
• Cfs/Fibromyalgia Experts
• References
• Searchable Terms
• Acknowledgments
• About the Author
• Praise
• Books by Mary J. Shomon
• Copyright
• About the publisher