Mayo Clinic Guide to Fibromyalgia

Strategies to Take Back Your Life

Andy Abril, Barbara K. Bruce

• Publisher: Mayo Clinic Press
• Year: 2019
• eBook ISBN: 9780795352775
• Topic: Medicine
• Subtopic: Diseases & Allergies

" Coming from one of the most reliable, respected health resources that Americans have, this book is the first one a newly diagnosed patient should consult." — Publishers Weekly
 
Drawing on decades of experience in treating fibromyalgia, this book can help people with this much-misunderstood condition return to a fulfilling, enjoyable life. From personal stories of patients to the compassionate expertise of its medical editors, this guide seeks to inform, first explaining what fibromyalgia is—and isn't—and helps guide readers toward finding the best mix of research-supported strategies for managing their symptoms. Also included is an actionable daily plan that can be started right away. This book:
 
· Defines fibromyalgia, describes what causes it, and lists the challenges it can pose
· Outlines treatment options
· Describes strategies for managing fibromyalgia
· Provides steps toward working with your health care team and family and creating a daily action plan for managing symptoms

PART 1 What is fibromyalgia?

Your muscles ache. Your joints hurt. Your neck feels stiff. Your thinking often seems muddled. You’re exhausted. You feel lightheaded sometimes. You can’t sleep — or, all you want to do is sleep more.

With fibromyalgia, you may feel all of this — and more — but have no idea why. To make things worse, maybe you’ve had every medical test imaginable, yet your doctor can’t say what’s causing your symptoms.

The key to remember in all of this is that the symptoms you’re feeling are real. Fibromyalgia is a real condition. It’s also a treatable condition. There are ways fibromyalgia can be managed, which you’ll learn about in this book.

In Part 1, you’ll get a better understanding of what fibromyalgia is and what it isn’t. You’ll get to know its signs and symptoms — and why it’s so hard to diagnose. You’ll also discover the many effects of this condition. Fibromyalgia can touch your life in more ways than you might imagine.

Getting to know more about fibromyalgia is the first step toward managing it and living your best life now. Let’s get started.

CHAPTER 1 A brief introduction

Fibromyalgia is often misunderstood. Some people believe it isn’t real, or that its symptoms are signs of depression, stress or any other number of other conditions.

Mayo Clinic Guide to Fibromyalgia dispels common myths like these and outlines the facts about fibromyalgia. Fibromyalgia is, indeed, a real condition. It’s a sensory disorder caused by a miscommunication between the nerves throughout your body and your brain. And it’s treatable.

In the pages that follow, you’ll learn what researchers have uncovered about fibromyalgia — what it is, what it isn’t and what causes it. Better yet, by the time you get to the end of this book, you’ll have a set of research-supported tools and strategies to manage your fibromyalgia symptoms so that you can return to the life you enjoy.

People who use the strategies in this book say that they help lessen the effect fibromyalgia has on their lives. They feel less pain and are less tired and depressed.

If you have fibromyalgia, you may wonder what steps you should take and how to begin your treatment plan. If you think you might have fibromyalgia but don’t know for sure, you may not know where to turn. Or maybe you’re reading this book because someone you care about has fibromyalgia, and you’re not sure how to help. This book is for every one of you.

Page by page, this book offers guidance and hope that fibromyalgia doesn’t have to rule your life. You can live well with this condition, and the pages that follow will teach you how. Let’s start the journey by meeting two people with fibromyalgia.

Gloria’s story

‘I hadn’t even heard of fibromyalgia’

Gloria likely had been dealing with fibromyalgia for 20 years but didn’t know it.

It isn’t surprising that it took so long for Gloria to learn that she has fibromyalgia. When her symptoms first appeared, the term fibromyalgia was barely known.

Gloria’s medical history is also anything but simple. She’s had kidney, bladder and reproductive issues. At one point, she was in and out of the hospital for a month because of a viral illness.

Gloria has also faced her fair share of stress. Her son was born with a heart defect, her daughter with a chest deformity. And her husband’s work took the family on several cross-country moves.

By 2001, Gloria was struggling. It became difficult for her just to get through each day. She was having trouble sleeping. She was tired all the time, and she felt worse by the day. “I ached from my head to my toenails,” Gloria said.

It seemed that any one — or any combination — of the life events Gloria was experiencing could be causing her symptoms. So Gloria met with doctors. After a thorough workup, she was told she had fibromyalgia.

At first, Gloria wasn’t sure what to think. “I remember asking myself, What will they call it next?” A condition that had taken on many different names over the years (learn more starting on page 21), Gloria recalls, “I hadn’t even heard of fibromyalgia.”

Find out how Gloria learned to manage her fibromyalgia and how she’s doing today later in this book (see here). You’ll also hear from Gloria’s husband and get his point of view on supporting someone with fibromyalgia on page 212.

• • • • •

In Gloria’s words

“You ache, you hurt, your muscles ache, your joints hurt. Every nerve in my body just begins to pulsate under my skin. Sometimes it’s like every nerve is on fire. I could be standing at the sink doing dishes, and I feel like someone stuck me with a needle [along] those points in your body that they test. Oftentimes, [I’ll] get a sudden, stabbing pain in one of those areas for no reason at all.”

• • • • •

Justus’ story

‘I just couldn’t shake the pain’

At age 24, Justus may be the last person you’d think of when you picture someone with fibromyalgia. After all, the statistics are clear: More women than men experience fibromyalgia, and the condition often affects women who are middle-aged. But Justus isn’t alone, and he’s proof-positive that anyone of any age can have fibromyalgia.

Justus’ journey with fibromyalgia likely started even before he was a teenager. At age 12, he was playing ice hockey and recalls asking his mom to rub his knees, ankles, calves and elbows. His aches and pains eventually led him to a chiropractor and a massage therapist. As Justus continued to grow, so did his participation in sports. He played football and baseball and boxed. He planned to play baseball in college. But at the same time, he always hurt. The pain came to a head when Justus turned 17.

“I ended up pulling my hip flexor off my hip and breaking my hip in the process. I spent my 17th birthday in the hospital,” Justus says. This led him to stop playing baseball.

“I just couldn’t shake the everyday pain ... It was hard every morning to get up.”

When Justus went to college, his pain followed him there. “I just couldn’t shake the everyday pain, the waking up and feeling like I got hit by a cement truck,” Justus says. “It was hard every morning to get up. My muscles ached and they hurt, and it didn’t matter if I worked out the day before or if I stayed home all day. It was the same kind of pain.”

Justus managed to earn his degree and chose to continue his schooling. But then he hit a wall.

“It was getting to be too much,” Justus said. “Not only is the pain affecting me, but now it’s starting to affect my mind and how I’m thinking about things and how I’m thinking about life. The everyday struggle of waking up and not knowing [what was wrong] would put me in a place where — not that I wanted to kill myself, but I was in a place where I didn’t necessarily want to wake up because I knew waking up would involve dealing with the pain again and not knowing [what was causing it].”

Questions started to swirl in his mind. Do I want to keep doing this every single day? Who do I talk to? Is this just in my head? Am I making this up? Is this even really happening? I look like I’m healthy, but I don’t feel like I’m healthy.

Friends couldn’t understand what he was going through, and that added to his misery, mentally and emotionally. Doctor after doctor had no answer to explain his symptoms. Justus felt alone and unsure of what to do.

With his parents by his side, Justus went from doctor to doctor and clinic to clinic in search of an answer that would explain his symptoms. Ultimately, Justus learned he had fibromyalgia. He was shocked and angry when he was told he had a condition that wasn’t going to go away. He was 22 years old.

“I was so angry when I was diagnosed,” Justus said. “Angry at God and angry at the situation and angry at anyone associated with [fibromyalgia] because they said I had this condition that they said is probably going to be for the rest of my life, and they say there’s no cure for it. And so that made me angry.”

Doctors told Justus about a three-week pain rehabilitation program that could help him, but he wasn’t ready for it. I can do this on my own, Justus told himself. I can figure this out. He read everything he could get his hands on and found videos to watch, all with the hope that he would be able to figure out how to manage his symptoms on his own.

Eleven months later, Justus reached his breaking point. I’m never going to be able to figure this out on my own, he remembers thinking. That’s when he signed up for and took part in the rehabilitation class. Through the program, Justus learned ways he could manage his symptoms without medication and improve his quality of life.

Learn what steps Justus took to manage his fibromyalgia and how he’s doing today here.

CHAPTER 2 Fibromyalgia’s lengthy journey

Through the stories Gloria and Justus shared in the last chapter, you got an inside look at what living with fibromyalgia is like day to day. If you have fibromyalgia, you may be able to relate to their experiences, or at least parts of them. Their symptoms may have sounded familiar to you.

With all of this in mind, let’s back up a step: What exactly is fibromyalgia?

In this chapter, you’ll learn about the history of fibromyalgia and the twists and turns that this condition has taken over time, leading to what experts and researchers know about it today.

New condition or ancient history?

Early origins

More recent developments

First a term, then a definition

What experts know today

What fibromyalgia is not

New condition or ancient history?

As diseases go, fibromyalgia may seem like one of the newer kids on the block. But is...

Table of contents

• IIIContents
• Letter from the editors
• How to use this book
• PART 1 What is fibromyalgia?
• CHAPTER 1 A brief introduction
• CHAPTER 2 Fibromyalgia’s lengthy journey
• CHAPTER 3 Myths vs. facts
• CHAPTER 4 What causes fibromyalgia?
• CHAPTER 5 How do I know if I have fibromyalgia?
• CHAPTER 6 The cost of fibromyalgia
• PART 2 Treating fibromyalgia
• CHAPTER 7 Medications
• CHAPTER 8 Cognitive behavioral therapy
• CHAPTER 9 Integrative medicine
• CHAPTER 10 Interdisciplinary pain management programs
• PART 3 Managing symptoms
• CHAPTER 11 Setting goals
• CHAPTER 12 Retraining your brain
• CHAPTER 13 Getting regular physical activity
• CHAPTER 14 Balance your time and energy
• CHAPTER 15 Stress and mood management
• CHAPTER 16 Take care of yourself
• PART 4 Living with fibromyalgia
• CHAPTER 17 Partnering with your doctor
• CHAPTER 18 Family and support
• CHAPTER 19 Work life
• Action guide
• Additional resources
• Other sources of information
• 259 Glossary