PART 1 What is fibromyalgia?
Your muscles ache. Your joints hurt. Your neck feels stiff. Your thinking often seems muddled. Youâre exhausted. You feel lightheaded sometimes. You canât sleep â or, all you want to do is sleep more.
With fibromyalgia, you may feel all of this â and more â but have no idea why. To make things worse, maybe youâve had every medical test imaginable, yet your doctor canât say whatâs causing your symptoms.
The key to remember in all of this is that the symptoms youâre feeling are real. Fibromyalgia is a real condition. Itâs also a treatable condition. There are ways fibromyalgia can be managed, which youâll learn about in this book.
In Part 1, youâll get a better understanding of what fibromyalgia is and what it isnât. Youâll get to know its signs and symptoms â and why itâs so hard to diagnose. Youâll 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. Letâs get started.
CHAPTER 1 A brief introduction
Fibromyalgia is often misunderstood. Some people believe it isnât 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. Itâs a sensory disorder caused by a miscommunication between the nerves throughout your body and your brain. And itâs treatable.
In the pages that follow, youâll learn what researchers have uncovered about fibromyalgia â what it is, what it isnât and what causes it. Better yet, by the time you get to the end of this book, youâll 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 donât know for sure, you may not know where to turn. Or maybe youâre reading this book because someone you care about has fibromyalgia, and youâre not sure how to help. This book is for every one of you.
Page by page, this book offers guidance and hope that fibromyalgia doesnât have to rule your life. You can live well with this condition, and the pages that follow will teach you how. Letâs start the journey by meeting two people with fibromyalgia.
Gloriaâs story
âI hadnât even heard of fibromyalgiaâ
Gloria likely had been dealing with fibromyalgia for 20 years but didnât know it.
It isnât 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.
Gloriaâs medical history is also anything but simple. Sheâs 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 husbandâs 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. âI ached from my head to my toenails,â Gloria said.
It seemed that any one â or any combination â 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 wasnât sure what to think. âI remember asking myself, What will they call it next?â A condition that had taken on many different names over the years (learn more starting on page 21), Gloria recalls, âI hadnât even heard of fibromyalgia.â
Find out how Gloria learned to manage her fibromyalgia and how sheâs doing today later in this book (see here). Youâll also hear from Gloriaâs husband and get his point of view on supporting someone with fibromyalgia on page 212.
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âYou ache, you hurt, your muscles ache, your joints hurt. Every nerve in my body just begins to pulsate under my skin. Sometimes itâs 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, [Iâll] get a sudden, stabbing pain in one of those areas for no reason at all.â
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Justusâ story
âI just couldnât shake the painâ
At age 24, Justus may be the last person youâd 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 isnât alone, and heâs proof-positive that anyone of any age can have fibromyalgia.
Justusâ 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.
âI ended up pulling my hip flexor off my hip and breaking my hip in the process. I spent my 17th birthday in the hospital,â Justus says. This led him to stop playing baseball.
âI just couldnât shake the everyday pain ... It was hard every morning to get up.â
When Justus went to college, his pain followed him there. âI just couldnât shake the everyday pain, the waking up and feeling like I got hit by a cement truck,â Justus says. âIt was hard every morning to get up. My muscles ached and they hurt, and it didnât matter if I worked out the day before or if I stayed home all day. It was the same kind of pain.â
Justus managed to earn his degree and chose to continue his schooling. But then he hit a wall.
âIt was getting to be too much,â Justus said. âNot only is the pain affecting me, but now itâs starting to affect my mind and how Iâm thinking about things and how Iâm thinking about life. The everyday struggle of waking up and not knowing [what was wrong] would put me in a place where â not that I wanted to kill myself, but I was in a place where I didnât necessarily want to wake up because I knew waking up would involve dealing with the pain again and not knowing [what was causing it].â
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 Iâm healthy, but I donât feel like Iâm healthy.
Friends couldnât 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 wasnât going to go away. He was 22 years old.
âI was so angry when I was diagnosed,â Justus said. âAngry 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 thereâs no cure for it. And so that made me angry.â
Doctors told Justus about a three-week pain rehabilitation program that could help him, but he wasnât 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. Iâm never going to be able to figure this out on my own, he remembers thinking. Thatâs 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 heâs doing today here.
CHAPTER 2 Fibromyalgiaâs 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, letâs back up a step: What exactly is fibromyalgia?
In this chapter, youâll 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...