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The First Year: Fibromyalgia: An Essential Guide for the Newly Diagnosed Paperback – May 27, 2003
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Includes special sections on dealing with chronic psychological effects like fibrofog, identifying fibromyalgia in children, and finding or starting a support group that works for you.
About the Author
CLAUDIA CRAIG MAREK, M.A., is a medical assistant who has counseled fibromyalgia patients for more than a dozen years and the co-author of What Your Doctor May Not Tell You About Fibromyalgia. She lives in Los Angeles.
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Marek, on the other hand, thoroughly understands and validates the psychology of the patient, ranging from grief and depression over losing what can never be regained to resentment and anger toward those who are "normal" (like the successful, pain-free physician for whom it's "easy" to make any claims about the disease and his patients). She's uncommonly realistic about the disorder, stressing acceptance of a life-long affliction as a key to coping with it and getting the most out of life with what resources you have left. Whatever it's called--fibromyalgia, ibs, chronic fatigue syndrome, depression, somatoform disorder (there's a discouraging amount of overlap--the condition is as real, unshakable, undeniable as the loss of a limb, and those who have it can not always make plans for the future, or even be at their best discussing someone else's future at day's end. And while going out for dinner may be within the realm of possibility for someone with fibro, the "price" for doing so can be far greater than any restaurant tab. For this reason, the book, or at least some of its chapters, may be of at least as much value to a spouse or close relation as to the patient herself. Some of the quoted testimonies by those afflicted with the condition practically tell the story by themselves.
There are a few caveats. The author promises not to make recommendations since she's not a physician. As a once-assistant to Dr. St. Amand, the chief proponent of the guaifenesin regimen, she briefly presents the approach (without pushing it), but she does take as a scientific "given" its emphasis on pressure and trigger points, mapping the body, etc., when in fact much of this practice and vocabulary is relatively alien even to many physicians who are sympathetic toward patients with the disorder. She's also big on the "hypoglycemic" solution, stressing the avoidance of all sugars (even certain vegetables) and, of course, caffeine and stimulants. Finally, her praise of the computer as a "godsend" may be over hasty, especially in the cases of those who take the path of "virtual" reality at the exclusion of endeavoring to get out into nature and society.
Also, she draws far more comfort from the naming of a disease (she explains how "fibromyalgia" didn't "exist" as a recognized syndrome until as recently as 15 years ago) than would some readers. Let's face it-- a physician can look at his patient and authoritatively pronounce a diagnosis of "chronic fatigue syndrome," "depression," "IBS," "somatoform disorder," "ADHD" or "fibromyalgia"--any number of so-called "functional illnesses"--and some patients will no doubt gain solace from such a definitive-sounding diagnosis. But at their core (or lack of it) these terms are often essentially meaningless, even to the point of being interchangeable. In fact, I wonder if someone who's heard them all might not find it refreshing for a change to meet a doctor who said, "I can't find anything abnormal in the tests. I frankly don't know what's producing your symptoms." (It goes without saying that publishers of books about all the aforementioned taxonomies would not place themselves in this latter category.)
In sum, this is a comprehensive if general overview. The organization is a bit misleading, since it doesn't provide a truly useful step by step, month by month regimen or protocol (the date markers are primarily an arbitrary organizing device employed by the author). Nevertheless, for someone who isn't read deeply in the subject, the book is easily recommended as a common-sense introduction to fibromyalgia. The author finishes her introduction with a quote from Wordsworth's "Immortality Ode," the same lines that echo through Natalie Wood's mind (and the soundtrack) at the conclusion of the movie "Splendor in the Grass." Later in the book the author credits the quote to Whitman. At least both poets had two-syllable last names beginning with the same consonant, both wrote in the same century and both spoke English--and it's a great poem, regardless of who gets the credit.
The book is separated into handy segments. You can learn what you need to know immediately and then build on it. There are explanations on common tests for co-existing conditions that may be adding to your problem. Some of these conditions that may profoundly impact your quality of life. Their descriptions are included,. and advice on how to ease their impact. There are sections on medical insurance, diet, vacations, raising children with fibromyalgia (and what to look for), support groups, work-related problems, and one of the best letters explaining fibromyalgia to others. The description of cognitive deficits (fibrofog), so difficult for us to describe to others, is clear and hits the mark. Here is someone who understands.
One of the biggest problems patients with fibromyalgia face is that it is poorly understood by others. The patient often has to spend valuable energy and time educating supporters and even care providers. This book provides ways to smooth the education process. She also explains many symptoms by giving examples, and they are ones that will resonate with fibromyalgia patients. This book is not just for the newly diagnosed. I believe that all patients with fibromyalgia, and their supporters would benefit greatly by reading this book.