The Complete Guide to Healing Fibromyalgia: How to Conquer Pain, Fatigue, and Other Symptoms - And Live Your Life to the Fullest

INTRODUCTION

Millions of people in the United States and millions more around the world wake up each day feeling as if they had not slept and knowing that the pain they feel as they get out of bed will stay with them the rest of the day, and the day after that, and on and on.

They suffer from a medical condition called fibromyalgia. Some people with the condition will be too fatigued to make breakfast for their children or be in too much pain to lift their infants into a high chair. Young men and women in their career-building years may be unable to continue going to work and may face the likelihood of disability. Couples who once enjoyed socializing, going on vacations, playing with their children, and making love find that the chronic pain, joint stiffness, uncertainty of bowel problems, and overwhelming fatigue experienced by one of them has greatly stressed their relationship. Otherwise healthy-looking men and women who once jogged and swam and played tennis now find it an athletic event to walk to the end of their driveway.

Not so long ago, people who lived with these debilitating symptoms were told it was all in their head, that they were imagining things, or even that they were crazy. If they could find a doctor who would listen and who was sympathetic, they might get a variety of drugs that did little or nothing to relieve their pain or the many other symptoms they were experiencing.

Thank goodness those days are over.

The good news is that the medical profession, the scientific community, and the pharmaceutical industry now recognize fibromyalgia as a legitimate condition. That means patients—most often women, because 80 percent of those with fibromyalgia are female—are much more successful at finding medical assistance; that research into the causes, prevention, and treatment of fibromyalgia is actively being pursued; and drug companies, seizing an opportunity, are developing prescription medications.

There is more good news. Although the symptoms of fibromyalgia are many and often serious, a growing number of people with the syndrome are finding effective ways to combat them. Some people turn to conventional approaches while others choose alternative and complementary therapies. This book offers you information and choices from both sides of the aisle and also discusses what many people with fibromyalgia are learning for themselves: combining conventional and complementary therapies is often the best way to fight this disease.

As Vera, a thirty-one-year-old fibromyalgia patient noted at a support group gathering, When I first began researching all the different ways to treat fibromyalgia, I got anxious because I thought there were way too many choices. Then I realized that having many possibly effective options was a good thing. Imagine if there were only three or four treatments and none of them worked for me. Then what would I do? I actually feel empowered by having so many choices. I found what I call the three Ms that work for me: medication, massage, and MSM [a natural supplement]. Oh yes, and my support group, which is a huge help as well. Vera’s story is not unusual: you, too, can find relief from fibromyalgia if you are willing to embrace the options available to you and find those that are most suited to your needs and lifestyle.

When compared with other health challenges that can be as debilitating as fibromyalgia is for so many people, our understanding of this syndrome is in its infancy. Diagnosis can be a very long process, often taking years from the time an individual reports symptoms to when a doctor finally identifies the syndrome. Once the syndrome is diagnosed, there are only three FDA-approved drugs specifically for fibromyalgia, although there are many other medications healthcare providers can prescribe for off-label use to treat the symptoms, and also many more natural and alternative and complementary options.

This book explores what we know about fibromyalgia and how individuals with the syndrome can live their lives to the fullest. In these pages you will find the most up-to-date information on diagnosis, including the new preliminary diagnostic guidelines (2010) from the American College of Rheumatology, as well as many treatment options from both the conventional and complementary realms, and suggestions on ways to improve quality of life.

HOW TO USE THIS BOOK

The book is divided into two main sections. The four chapters that make up Part 1 explore the syndrome of fibromyalgia: what it is and what it is not; a detailed evaluation of its signs and symptoms, and what they mean to people who live with fibromyalgia; how to find healthcare providers to help you get a diagnosis and treatment; and what the process of getting a diagnosis includes. These chapters help fibromyalgia patients understand the role they can play in getting a diagnosis and choosing treatment options.

Then in Part 2, Take Charge of Your Life With Fibromyalgia, readers learn about all the options they have now that they have a diagnosis. The chapters in this section explore medications and other conventional treatments, natural supplements and herbal remedies, alternative/complementary therapies, different types of movement and exercise therapies, the role of diet in fighting fibromyalgia, the value of support systems and how to utilize them, and how to handle everyday activities and responsibilities when you have fibromyalgia, including what to do when you travel, how to restore your sex life, how to cope with motherhood, what to do about work and disability, and how to learn new sleep habits.

Having fibromyalgia changes lives—the lives of the people with the syndrome and those of their loved ones. This book is for all of you.

PART I

Fibromyalgia: The Syndrome

CHAPTER ONE

An Introduction to Fibromyalgia

I wish I didn’t feel so exhausted and in pain all the time.

It’s a struggle to even get out of bed in the morning. I have kids to take care of, but I can’t even get it together to make breakfast half the time.

I used to have a great job, and then I had to quit because the fatigue and the lack of concentration made it impossible for me to keep working.

I don’t know which is worse, the fatigue or the depression or the pain. All I know is, I’m sick and tired of feeling sick and tired.

Do any of these statements describe you? If so, you may be one of the millions of people in the United States who is living with fibromyalgia. We say millions because it is difficult to obtain an accurate number of people who have fibromyalgia. Depending on the source, the numbers range from 6 to 12 million. According to the Mayo Clinic, for example, 2 percent of the American population has the syndrome, which places the figure at around 6 million. The National Fibromyalgia Association estimates the number to be 10 million in the United States and that this syndrome affects 3 to 6 percent of the world’s population. If you check with WebMD, a popular Web site among Internet surfers looking for health-related information, you will see the high figure of 12 million Americans.

Why is there such a large range in estimates? One reason is that fibromyalgia is difficult to diagnose; another is that it can take several years of going to doctors before an individual is finally given a diagnosis. Many cases are believed to go unreported or undocumented because some people just give up seeking a medical reason for their symptoms. Quite simply, they are sick and tired of being sick and tired, and that no one can seem to tell them why.

Then there is the controversy among some physicians: does fibromyalgia really exist? It would be hard to convince the millions of people who have it that it does not, and indeed there is plenty of evidence that it does exist. However, a few physicians still shake their heads whenever the topic comes up. On January 14, 2008, The New York Times had a front-page story entitled Drug approved. Is disease real? with the subtitle, Some doctors dispute existence of pain. The drug referred to was pregabalin (Lyrica), the first prescription medication approved by the Food and Drug Administration (FDA) for treatment of fibromyalgia—the nonexistent disease. (Actually, fibromyalgia is a syndrome and not a disease, but we explain that below.)

Although fibromyalgia is admittedly a challenge to diagnose and to treat, it is also a challenge to live with. We want to assist you in taking on these challenges and help you manage your relationship with this syndrome and with yourself.

So do not worry about the numbers: the number you should be concerned with is one, whether it is you or a loved one who has fibromyalgia or who is displaying symptoms. Regardless of how many millions of people are affected by fibromyalgia, the important thing for you to do is to gather all the information you can and seek help. And there’s no better time to begin than right now.

WHAT IS FIBROMYALGIA?

The word fibromyalgia comes from fibro, referring to fibrous tissue such as ligaments and tendons; my which refers to muscles; and algia, which means pain. Fibromyalgia is a common, chronic pain disorder that impacts an individual on every level: physical, mental, emotional, social, and spiritual. Along with the persistent pain, individuals with fibromyalgia experience fatigue that can often be overwhelming, and a multitude of other physical and psychological symptoms that can affect all the organ systems in the body.

Fibromyalgia is a syndrome, not a disease. A disease is defined as a medical condition for which there is a particular cause or causes and signs and symptoms that can be recognized. This differs from a syndrome, which is a collection of signs, symptoms, and medical problems that occur together but are not related to one specific, identifiable cause.

Fibromyalgia is generally accepted as a type of arthritis, but unlike most forms of arthritis, fibromyalgia primarily affects the muscles rather than the joints. Although fibromyalgia is a chronic condition, there are a few promising facts we can say about it. One, it is not a fatal condition, and the pain generally does not worsen over time. Two, remission can occur when individuals participate in therapy and healthful lifestyle choices.

Among all the challenges that fibromyalgia patients face, there is also the frustration factor. Few people understand the condition, and it can be very difficult for family members and friends to relate to what an individual with fibromyalgia experiences every day of her or his life. If you are a mother who has fibromyalgia, you may hear Why is mommy so tired all the time? Your symptoms may have caused you to quit your job, stop seeing friends or entertaining, and cancel travel plans. Sexual intimacy may seem impossible. You may be too tired or depressed or uncomfortable to care much about anything except wanting to feel better.

The second part of this book goes into detail about how you can manage your symptoms and deal with the emotional and social challenges of this syndrome. For now, let’s take a closer look at the syndrome itself.

WHO GETS FIBROMYALGIA?

Fibromyalgia is typically thought of as a woman’s disease. Indeed, research indicates that 70 to 90 percent of those affected by the syndrome are females, and that the diagnosis is usually made between the childbearing ages of 20 and 50. However, according to the American College of Rheumatology’s classification of fibromyalgia, about 8 percent of adults have the syndrome by age 80. Fibromyalgia is often seen in families, among siblings or mothers and their children. Men are also affected by the syndrome, as are children.

Men and Fibromyalgia

How did I get a woman’s disease? That is a common question among the men who are diagnosed with fibromyalgia. In fact, men often have a difficult time getting diagnosed properly—more so than women do. As a result, it is believed many men with fibromyalgia are undiagnosed and so their cases are unreported. This has led some experts to suggest that the number of men suffering from the syndrome could be closer to 30 percent of all sufferers.

Men and women may not experience fibromyalgia in the same way. Symptoms in men tend to be milder, and men also reportedly experience fewer of the common symptoms, including fatigue, morning stiffness, and irritable bowel syndrome. At least one study, however, reported that symptoms in men were actually more severe than those experienced by women.

It is difficult to get a clear picture of how fibromyalgia affects men for several reasons: the condition is largely viewed as a woman’s disease and so some doctors do not believe that men can get the syndrome; men are often reluctant to admit to severe pain or discomfort and so don’t seek help; and men generally are expected to bear pain quietly and so do not seek active treatment for fibromyalgia even if they do get diagnosed.

Fibromyalgia in Children

It is estimated that one in six people who suffers with fibromyalgia is younger than 18. The encouraging news about childhood fibromyalgia is that children who develop the syndrome tend to have a better diagnosis than adults. Several studies report that more than 50 percent of children with fibromyalgia recover within two to three years of experiencing symptoms.

As in adults, among children fibromyalgia affects females more than males, and diagnosis is a challenge because the symptoms are often mistaken for those of other disorders and diseases. Fibromyalgia can have a major impact on a child’s health and quality of life, because the symptoms can make it difficult for him or her to attend school, play with friends, and participate in routine childhood activities. Children who have a parent with fibromyalgia are more likely to develop the condition, as fibromyalgia has a genetic component. (In Chapter 10, see Raising a Child Who Has Fibromyalgia.)

WHAT CAUSES FIBROMYALGIA?

This is a question that researchers would love to answer with confidence, but so far all they have are theories. For one thing, thus far no tests or physical examinations have indicated any major cause of the syndrome. For another, it affects a wide range of people: young, middle-aged, seniors, children, women, and men. Finding a clue to the cause of fibromyalgia among this immense population is a monumental task, but it is one that scientists are aggressively