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The Fibromyalgia SolutionA Breakthrough Approach to Heal Your Body and Take Back Your Life
By David Dryland
Warner WellnessCopyright © 2007 David Dryland, MD
All right reserved.
Chapter OneThe Frustration of Fibromyalgia
Sophie, a successful young woman in her early thirties, had been sick for almost a year by the time she first came to my office. Her world was rapidly unraveling, and neither she nor anyone else could figure out why. When I walked into the exam room, she handed me a comprehensive chart of everything that had happened in her life over the past sixteen months. She had painstakingly pieced together a record, month by month, listing the symptoms she had experienced, the doctors she had seen, the treatments she had sought, and the medications she had taken. She also included her activity level as well as an overview of events in both her work and personal life. She put the chart together because she just couldn't make sense of her complex symptoms: their variety, when they occurred, or why they got worse. She instinctively knew that somehow all of her diverse and seemingly unrelated physical ailments had to be linked to one another. She hoped I could tell her how.
I looked at her chart. Before pain and illness invaded her body, it seemed as though Sophie enjoyed a great life. She owned a house, had a good job, and lived in a beautiful area. On any given weekend, depending on the season, you might find herexploring the mountains on horseback, running white water in her kayak, skiing with friends, hiking up a new trail, or camping under the stars. I scanned her chart carefully, noting that as her symptoms increased, her activity level steadily decreased.
Sophie explained to me that she had pain just about everywhere. Like many other fibromyalgia patients, Sophie woke up every morning feeling as though she was in a train wreck the night before. After lying on her aching muscles all night, her bed felt like a slab of concrete, and she felt too tired to get up but too uncomfortable not to. She suffered frequent neck spasms, her ribs hurt when she took a deep breath, her back hurt if she sat for more than a few moments, and her arms and wrists ached as if she had been beaten with a steel bat. It hurt for Sophie to grip or even lift the smallest of everyday tools, such as a pen or coffee mug. She couldn't drive, feed her horses, hold hands with her husband, or even scratch her dog on the head. She had to drink everything out of a straw because lifting a glass full of liquid was out of the question. She had made her living as a writer but could no longer bear the pain of sitting at a computer for hours at a time.
In addition to her constant pain, Sophie felt sick all the time. Her allergies had been overwhelming that year. She had never had asthma before, but this past summer she could hardly walk up a hill without having an asthma attack. She felt like she had a never-ending case of the flu and collapsed by 2 p.m. every day. After 2 p.m. she watched the clock, waiting for it to be late enough to go to bed. On better days she would take a short walk, but any other activity was out of the question. Walking even made her arms hurt more. That was the thing, she said. Everything hurt so much more than it should. She had tried to ski once that winter, but when she fell on her hip, it hurt intensely for a week instead of just being bruised and sore for a day or two. She became afraid of taking part in any activity in which she might risk a fall or injury.
When Sophie came to see me, she had already seen fourteen healthcare providers, including one in an emergency room. She had tried well over a dozen different medications for sleep, pain, and possible infections. There were X-rays, an MRI scan, an extremely painful nerve-conduction test, painful trigger-point injections, and a comprehensive set of blood work to test for possible conditions and diseases. Nothing explained the pain and illness that Sophie couldn't shake.
Each doctor's visit was an emotional roller coaster. She wanted answers desperately, but she didn't want to find out that she had lupus, carpal tunnel syndrome, nerve problems, rheumatoid arthritis, Lyme disease, or any of the other things she was being tested for. When tests came back negative, she felt relief but also anguish that she still didn't know what was wrong. She, too, felt a bit like she was starting to lose her mind. With so much pain, how come nobody could find something wrong with her? Two of her doctors halfheartedly whispered the word "fibromyalgia," but one specifically said he didn't want to give her that label.
Fibromyalgia was the one answer Sophie knew she didn't want. She had done her research, and every time she read about fibromyalgia, the symptoms sounded all too familiar. The problem she saw with fibromyalgia was that doctors didn't really know what it was, and according to every Web site she looked at, people with fibromyalgia didn't get better. It seemed like a last-resort diagnosis, and that wasn't what she wanted. She didn't want to "learn to live with the symptoms," which is the prognosis most fibromyalgia patients receive. She wanted to know how to get better. She couldn't bear the thought of moving through life in such a slow, painful way-one in which time was measured in pain-filled moments rather than joy-filled hours or days. One of her deepest fears was that the pain would prevent her from having children.
Does Sophie's story sound all too familiar? Chances are, you're reading this book because either you or someone you love struggles with fibromyalgia. Can you relate to the patients who come into my office and tell me they feel like their lives are literally collapsing? They are women and men who, until their bodies were assaulted with endless pain, fatigue, and other inexplicable symptoms, were healthy, active people who were either enjoying their lives or at least making the most of what life had to offer them. As a whole, my patients are ambitious, driven, hard workers who care deeply about leading a meaningful life. Many of them were previously diagnosed with fibromyalgia and told that the best modern medicine might offer is help with some of the symptoms. If you've heard a similar story in your search for answers, don't believe it. Fibromyalgia is no longer a dead-end diagnosis.
Fibromyalgia feels different to everyone. The common denominator in most cases is an elevated awareness of painful and uncomfortable sensations throughout the body. The pain can be diffuse or localized, and it can move from one part of the body to another. Most patients complain of pain and stiffness in their neck and shoulders or in other stiff, tight muscles. For a lot of people, there is general tenderness throughout the body. Painful sensations may be described as aching, burning, or throbbing. What hurt intensely yesterday may only be a mild ache today. In fact, so many places can hurt that at a doctor's visit, a patient may only focus on the things that really hurt that day. Confounding to doctor and patient, such an account distorts the picture of the illness and often prevents an accurate diagnosis from being made.
Fibromyalgia patients are chronically tired and often wake up feeling as if they didn't sleep at all. Depression is common, but who wouldn't get depressed by unending, unexplained misery? Many people experience memory, concentration, and cognition problems-a condition commonly known as fibro fog. Fibro fog is actually one of the more frustrating symptoms people experience, making it difficult to multitask, concentrate at work, or think on their feet. Other symptoms include headaches, numbness, skin irritation, feeling too cold or too hot, sensitivity to bright lights or loud noises, and an aversion to intense tastes and smells. Due to a depressed immune system, fibromyalgia patients are more likely to catch a cold. They will be sick longer and have a longer recovery period. Existing or previously undetected allergies can become unbearable. Many fibromyalgia patients also suffer from irritable bowel syndrome, adding tremendously to their discomfort.
Headaches and heartaches go hand in hand with fibromyalgia, as you struggle to maintain relationships, jobs, and even simple daily routines. Fibromyalgia symptoms can come and go, leaving you enormously frustrated with your inability to know how you will feel on any given day. Adding insult to injury is the fact that no matter how terrible you feel, you can still appear healthy to everyone else. An initial outpouring of sympathy from friends and family will often fade as the illness drags on without any explanation. Physicians have trouble identifying a physical cause that explains the continued pain. Even when a physical cause is identified, such as a strained back, the pain is always far greater than would be expected for the type of injury.
Fibromyalgia is full of cruel ironies. It makes you too tired to get out of bed, while at the same time, lying on a mattress is so unbearable, you can't stand to stay there. You will want nothing more than to fall into a deep sleep but find yourself staring at the clock instead. Exercise that feels great one day leaves you in agony the next day. You won't feel like drinking, but you'll still feel like you have a hangover. And on the day when you wake up knowing you would do anything to get your health back, you are too exhausted to figure out how on your own.
Common Fibromyalgia Symptoms
* widespread, variable aches and pains
* morning stiffness
* restless sleep
* pain exacerbated by exercise
* noninflammatory pain that doesn't respond to medication
* increased sensitivity to allergens
* confusion or difficulty concentrating
* abdominal cramping
* numbness or tingling
* easily irritated skin
* sensitivity to temperature
* sensitivity to bright lights or loud noises
* sensitivity to intense tastes or smells
* skin that readily flushes
* discomfort in crowds
A Brief History of Fibromyalgia
For decades, fibromyalgia patients have struggled in silence, as much of the medical world turned a blind eye to their plight. It was less than twenty-five years ago that modern medicine officially recognized fibromyalgia as a clinical diagnosis. People have suffered from it for much longer. Hippocrates first described a similar set of symptoms in 400 BC. Not until 1816 did the British surgeon William Balfour once again make note of the condition. In 1904, the British physician Sir William Gowers classified this set of symptoms as fibrositis, now known as fibromyalgia, indicating a medical condition that stemmed from inflammation of the muscles. Fibromyalgia was considered "arthritis of the muscles" and classified with other rheumatological conditions involving pain in the muscles or joints. (Rheumatological conditions are a set of diseases generally involving inflammation of joints or other tissues, such as gout or rheumatoid arthritis.) Early research did indicate slight abnormalities in the muscles of fibromyalgia patients, but these theories were later disproved. Once it became clear that there was no inflammation in the muscles, there was no longer any logical explanation as to why fibromyalgia caused pain.
Throughout most of the last century, many physicians thought of fibromyalgia as a purely psychosomatic condition, and in the beginning that was an understandable reaction. Their patients complained of pain in their muscles and joints despite the fact that the physicians couldn't find anything wrong. Until the 1990s, there were no guidelines on how to diagnose fibromyalgia, and most physicians dismissed the condition or made the diagnosis by default when they couldn't find anything else responsible for the pain.
As early as 1981, the fibromyalgia research pioneer Dr. Muhammad Yunnus conducted clinical studies of patients with fibromyalgia and identified a wider range of symptoms than the muscle pain that commonly occurred in these patients. He was one of the first researchers to understand that the symptoms these patients experienced were not only real but somehow interconnected. He called for physicians to base a fibromyalgia diagnosis on its own characteristic features rather than on the absence of another recognizable condition. Sadly, this advice fell on deaf ears, and fibromyalgia continued to be thought of as the diagnosis doctors used when they failed to find another problem. In many cases, this is still true today.
Eventually, the population of fibromyalgia patients became too big to simply ignore. In 1987, the American Medical Association (AMA) finally recognized fibromyalgia as an illness and cause of disability. The American College of Rheumatology (ACR) followed suit in 1990, establishing much-needed "official" diagnostic criteria. While the newfound recognition and specific diagnostic criteria certainly helped validate fibromyalgia's existence as a clinical disorder, it didn't help answer any questions about the nature of the illness or why some people got it when others didn't. Furthermore, the name still referred to the old belief that the problem was primarily in the muscles. Fibro means fibrous (as in muscle fibers), myo means muscle, and algiameans pain-muscle fiber pain. Despite the fact that these changes didn't actually answer the important questions about fibromyalgia, they still helped a lot of people simply by validating their suffering. Researchers have found that people with fibromyalgia actually feel better about themselves and their condition once they have a diagnosis, even though that diagnosis has not traditionally offered any tangible relief. There is, however, tremendous mental relief in being able to put a name to your illness.
A Daunting Medical Challenge
Since fibromyalgia was officially recognized, it has been one of medicine's most confounding disorders. Symptoms are highly varied and can come and go intermittently, making it extremely frustrating to diagnose. Unfortunately, most doctors are trained to treat existing and known conditions, and very few have the time to take on the unexplainable in a twenty-minute office visit. As a result, fibromyalgia patients go from doctor to doctor, hoping for answers. Typical fibromyalgia patients visit one doctor per month and wind up in the hospital once every three years. They have a high incidence of surgeries and a disproportionately high occurrence of carpal tunnel syndrome and other pain-related problems. Surgeries are rarely successful and can sometimes make their suffering even worse. Many are misdiagnosed and may even undergo unnecessary surgery. The average fibromyalgia patient suffers for five years or more and sees between five and fifteen doctors before receiving an accurate diagnosis. Even when people are finally diagnosed, they have a label, which is more than they had before, but not nearly enough.
The ACR conservatively estimates that up to six million people in the United States have fibromyalgia. That's about one person in fifty. Other organizations and experts estimate that eight to ten million people suffer from fibromyalgia-one in thirty-four. Personally, I believe that about one out of ten people is suffering from fibromyalgia, having either the preliminary stages or the full-blown disorder. Consider the fact that at any given time, 10 to 12 percent of the population reports chronic, generalized pain unrelated to a structural or inflammatory cause. That percentage represents thirty million people in this country who may have fibromyalgia or are seriously at risk of developing this disabling condition. A lot of these people gradually get better, and that constant ache becomes a distant memory. However, just because they get better doesn't mean they didn't have a brush with fibromyalgia. These patients may have sought treatment, but their symptoms, being relatively less severe, allowed rest, pain alleviation, and self-nurturing to facilitate natural remission. It was not necessary for their condition to be exhaustively explored or for any official diagnosis to be made. These statistics paint an important picture of a common and devastating illness that has been shunned by modern medicine. More important is that behind each one of these statistics is a real person whose life has been torn apart by pain, confusion, and unending frustration.
Perhaps it is due to the long-standing dominance of men in medicine that fibromyalgia patients struggled so hard for recognition. Approximately 85 percent of fibromyalgia patients are female. Back in the 1970s and 1980s, when increasing numbers of women were complaining of fibromyalgia symptoms, more than 80 percent of physicians were men. Too many of those male physicians of past generations simply couldn't relate to women complaining of pain not immediately traceable to an obvious medical condition. Men have also suffered from the long-standing view of fibromyalgia as a "female illness." As a result, men are much less likely to be correctly diagnosed with fibromyalgia or to even have it considered as a possible problem.
Excerpted from The Fibromyalgia Solution by David Dryland Copyright © 2007 by David Dryland, MD. Excerpted by permission.
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