Chapter One
Introduction
Better than a thousand useless words is one single word that gives peace.
-- The Dharnmapada
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? IIs 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 US 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, fuzzybrained, 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 US 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 ...
Continues...
Excerpted from Living Well with Chronic Fatigue Syndrome and Fibromyalgia by Shomon, Mary J. Excerpted by permission.
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