Über die Autorin bzw. den Autor

Deborah Barrett, PhD, MSW, LCSW (Chapel Hill, NC), is a clinical associate professor in the School of Social Work at the University of North Carolina at Chapel Hill and a psychotherapist in private practice. She has published self-help articles on fibromyalgia, as well as scholarly papers on health and illness, and public policy. She hosts a companion Web site to this book at www.paintracking.com.

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PAINTRACKING

Prometheus Books

Contents

Chapter 1. My Story.....................................................................9Chapter 2. Pain Positive?...............................................................13Chapter 3. Why Paintracking?............................................................19Chapter 4. Committing to the Process: Addressing the "yes, but ...".....................27Chapter 5. Envision Your Personalized Paintracking System...............................31Chapter 6. Tracking Your Well-Being.....................................................43Chapter 7. What Matters: Measuring Explanatory Factors..................................55Chapter 8. Learning from Your Own Experience............................................81Chapter 9. Products, Practices, and Professionals: Where to Begin?......................101Chapter 10. Strategies to Focus and Calm Your Mind......................................109Chapter 11. Strategies to Soothe Your Body..............................................121Chapter 12. Strategies to Shape Your Self-Talk..........................................141Chapter 13. Strategies to Pace Yourself.................................................159Chapter 14. Strategies to Improve Your Sleep............................................173Chapter 15. Strategies to Exercise More Effectively.....................................181Chapter 16. Collaborating Effectively with Your Doctor..................................199Chapter 17. Strategies to Make Sense of Prescription Medications........................221Chapter 18. Strategies for Working with Mental Health Professionals.....................255Chapter 19. Taking Care of Your Home....................................................273Chapter 20. Preparing for Holidays and Travel...........................................287Chapter 21. Creating a Workspace That Works.............................................295Chapter 22. Work Alternatives: Considering New Pathways.................................309Chapter 23. Approaching Social Relationships............................................329Chapter 24. Improving Committed Relationships...........................................345Chapter 25. Navigating Parenthood and Other Caregiving Roles............................359Chapter 26. Grief and Acceptance........................................................371Acknowledgments.........................................................................377Notes...................................................................................379Index...................................................................................389

Chapter One

This is the book I wish someone had handed me when I first encountered mysterious, overwhelming pain.

My pain began in June 1994, when I was twenty-eight and just weeks from completing a PhD in sociology at Stanford University. In a push to graduate, I spent long, intense hours at the computer keyboard, and, no surprise, my hands and forearms ached. I assumed this would pass with rest, and I daydreamed of the beach retreat I scheduled after graduation. But instead of easing, the pain worsened.

As a break from my graduate work, I had become active in capoeira, an Afro-Brazilian martial arts dance. During a fateful Tuesday evening class, despite sore arms from typing, I goat-walked the length of the gymon all fours, kicking up my legs behind me. As a fit, young woman with a naïve sense of invincibility, I regarded the mounting pain as a challenge to overcome rather than a signal to stop. The following day, I stubbornly persevered and lugged four bags of groceries the two and a half blocks to my apartment. By the time I reached the door, my pain was at the breaking point. I recall thinking it felt like the muscles in my forearms had been severed.

Over the days and weeks that followed, a burning sensation climbed up my shoulders and neck, across my back, and down the whole of my right leg. I had no idea what had hit me. My body seared with so much pain that I was unable to sleep and could barely take care of myself. My younger brother moved into my apartment and became my arms: he typed and cooked, and as the pain worsened, he even brushed my teeth. I summoned up the energy to visit multiple doctors, but each was baffled or dismissive. I was desperate for help.

Instead of starting the postdoctoral fellowship that awaited me at the University of North Carolina, I left San Francisco for my parents' home in Pennsylvania, virtually incapacitated. I was unable to hold a piece of paper or turn a doorknob. My parents became my caretakers, spoon-feeding me on my worst days. Over the next year, my mother, a family physician, assumed the role of medical detective, and my father became my stoic advocate. Together, we struggled to make sense of my mysterious, disabling symptoms. With my parents' support, I visited specialists who poked, prodded, and ran countless lab tests. Each visit raised my hopes, but none explained why I hurt so much.

My mother, distressed by the extent of my suffering, searched the medical literature until she found discussions of symptom patterns that mirrored my own. Her investigations led to the diagnoses of fibromyalgia and myofascial pain syndromes, which were confirmed by another round of doctor visits. While it was reassuring to name the demons, the diagnoses brought little relief. The prescribed medications produced more unpleasant side effects than comfort, and the hands-on therapies, although pleasant, failed to sustain any improvement. I ricocheted among pain-treatment programs, doctors, and physical therapy clinics, with little progress.

I read everything I could get my hands on about chronic pain and my specific diagnoses. Some of the advice helped some of the time, but just as often, my symptoms intensified. Take exercise, for example, which was described as essential to recovery. Often I felt good, even great, in the midst of a workout, but soon after, my pain would skyrocket, landing me in bed for days. Much of the advice seemed like empty words or unobtainable ideals. How was I supposed to accept my situation or improve my outlook—a common piece of advice—when I felt utterly miserable? I struggled so much, yet remained confused about what, if anything, helped. I had never been so frustrated.

Every now and then, I would experience a moment when my pain felt manageable. I rejoiced in these moments but had no idea what caused them. I was plagued with questions: Why would I experience a pain reprieve one moment and feel as if I'd been caught under a buffalo stampede the next? What made some mornings drastically better than others? Were there medications that would bring more substantial relief ?What determined the length of my worst pain flare-ups? What sort of exercise would really help? And most important, how could I improve?

I came to see that the only way I could answer these questions was to don an investigator's hat and track my own experience. As a sociologist, I was accustomed to evaluating questions with systematic, empirical data. However, tracking my pain was easier said than done. I detested the worksheets I had been given by the pain clinic, which seemed to require me to detail my every waking hour. I hated to focus the little energy I had on my problems. Still, I made multiple attempts, and...