In 1994, at age 28, I developed fibromyalgia during the final throes of my dissertation in sociology. My symptoms began suddenly after several months of little sleep, intensive typing, no knowledge of “ergonomics,” plus a sense of physical invincibility attributable to reaching my mid-twenties without having suffered anything “chronic.” Like most cases of fibromyalgia, it took several specialists, clinics, and finally, my own researching, until my symptoms were matched with the appropriate diagnosis. By then I had deteriorated substantially: I could barely feed myself, brush my teeth, or open doors. After a year of struggle and deterioration, I regained functionality through a combination of physical therapy, exercise, medication, careful pacing, and sleep. I still suffer from pain and fatigue, but nothing like the constant, intense pain I experienced daily in the first year. The most important factor in my recovery has been daily record-keeping or “paintracking.”
In 1995, I completed my Ph.D. in sociology at Stanford University with the help of a voice-activated computer software. Since then I have worked as a postdoctoral fellow at University of North Carolina at Chapel Hill, Emory University, and Duke University. During this time, I have also been writing about fibromyalgia, helping others adjust to life with chronic illness, and answering the frequent questions my writings have generated.
It is my strong belief that systematically tracking one’s symptoms as well as activities, medical regimen, and external conditions, provides invaluable information for improving. Self knowledge is particularly important in conditions such as fibromyalgia because no established medical treatment exists and symptoms remain “invisible” to onlookers. Understanding the reasons for our ups and downs allows us to adjust our daily activities to achieve the greatest improvements (however small at first).
I have been writing the book on fibromyalgia that I wish somebody had handed me when my pain first began. This book, Paintracking: Understanding and Improving Life with Fibromyalgia and Other Chronic Pains, has grown out of a Rockefeller Foundation program at Emory University, where I studied seemingly “invisible” illnesses. Its goal is to help individuals take charge of their condition by collecting and interpreting daily empirical data on their experiences. It also contains comprehensive information on
- medical theories about fibromyalgia,
- strategies to relieve pain and improve sleep,
- fostering healthy patient-doctor relations,
- negotiating social and personal relationships,
- maximizing employment possibilities, and
- affecting a positive attitude.
If I did not suffer from fibromyalgia, the book would be finished by now; but then, I would not have been writing it in the first place. Ah, the paradox! Nonetheless, the manuscript is moving along as I cull information from a multitude of sources, correspondences, and my own experience (the school of hard knocks). In just the last few years, many helpful books have appeared on fibromyalgia and related topics. I hope to add to these and help lessen the struggle of those adapting to life with a changed body. If you would like to be notified when the book becomes available, send a request and your contact information to email@example.com.
This page was revised on February 14, 2000.