My Story of Chronic Pain: Living with and Managing Chronic Pain
Several of you have written to me asking me to share more about myself, so here is my personal story. Following the narrative, I'll answer a few of your most frequently asked questions.
Twenty years ago, I was a busy and ambitious lady. I worked an average of 60 hours a week as Assistant Director of a statewide nonprofit serving developmentally disabled individuals. On top of that, I went to school part-time, taught aerobics, and did choreography and costuming for our local theater group – all while raising three teenagers by myself. There was so much I wanted to accomplish in life.
Then, at the age of 40, I came down with mononucleosis and never completely recovered. I was always exhausted and had periodic, unexplainable pain. Although one doctor speculated that I might have something called chronic fatigue syndrome, most insisted my problem was a combination of stress and “getting older.” One by one, I began eliminating or adjusting anything in my life that might be causing stress, but I didn't get any better.
A couple of years later I was in a serious automobile accident. The injuries I received from the accident eventually healed, but I felt even worse than I had before. My pain increased and became more widespread. The fatigue was overwhelming. I felt like I had a constant case of the flu. Even my clothes hurt when they touched my body. After receiving a couple more “stress” and “getting older” diagnoses, I quit even telling doctors how I really felt. I was afraid if one more said, “You're just getting older,” I might smack him!
I resigned myself to suffering in silence, watching the quality of my life deteriorate as the pain and fatigue continued to get worse. Sometimes I blamed myself. Secretly I wondered if other people my age felt as badly as I did but just did a better job of hiding it. Was there was some flaw in my character that prevented me from pushing through the pain and fatigue to lead a normal life?
Finally, after seven years of not knowing what was wrong with me, I met a nurse in a women's Bible study group. She recognized my symptoms and told me she thought I might have fibromyalgia. I had never even heard of it. Since she had FM herself, she was able to give me some information about it and help me find a doctor who knew how to diagnose it. At last, after all those years, I had a name for my suffering! Although I learned that FM is a debilitating disease with no known cure, it was nevertheless a relief to know what I was dealing with – and to know it wasn't my fault.
When I was finally diagnosed almost 13 years ago, there was very little information about fibromyalgia available. The Internet had just begun to gain popularity, so that's where I turned to try and learn all I could about this mysterious illness. It was through an online support group that I met another FM patient named Lynne Matallana. We began corresponding and quickly discovered that we had a lot in common – not the least of which was our passion for raising awareness about fibromyalgia. At that time, very few people had ever heard of it. We reasoned that until more people knew what fibromyalgia was, doctors would not learn how to diagnose it, very little money would be allocated for research and patients would continue to suffer.
Within six months, Lynne and I had formed the National Fibromyalgia Association, a nonprofit organization dedicated to raising awareness and improving the quality of life for people with FM. Today you'd be hard-pressed to find someone who hasn't at least heard of fibromyalgia. I can't help but think the NFA, which has grown to be the largest FM nonprofit in the country (and possibly the world), has played a big part in that progress.
I served as NFA's Vice President for eight years as well as being the Executive Editor for their magazine, Fibromyalgia AWARE, for four years from it's launch in 2002. As NFA grew, it became more and more necessary for me to travel. However, I discovered that every time I flew, I suffered a fibromyalgia flare that lasted for a minimum of two months. Although I wanted to continue working to educate and empower FM patients, I knew I had to find a way to do it from my home with minimal travel.
So in 2006, I became About.com's Fibromyalgia and Chronic Fatigue Syndrome Guide. I worked there for a year before becoming acquainted with HealthCentral. I was immediately impressed with HealthCentral's concern for patients. They welcomed input from their experts and had a genuine interest in providing a site that would meet patients' needs. When they offered me the opportunity to serve as a patient expert on ChronicPainConnection, I happily accepted. I've been here for two years now and continue to be grateful for the opportunity to meet and interact with each of you.
Here are a few other questions some of you have asked me:
Q: Are or were you a doctor or healthcare professional?
A: No. I am a writer and patient educator/advocate. My primary areas of expertise are fibromyalgia and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), although those have led to my involvement with other chronic pain issues as well.
Q: Have you published a book?
A: Not yet, although a number of people have urged me to do so. I've actually begun working on a project that may end up being a book, but I'm not quite ready to talk about it yet. I'll definitely let you know about it if and when I do.
Q: What treatment plan do you follow for your FM?
A: Like most people with FM, I find that a combination of medication and complementary threapies work best for me. I take tramadol and ibuprofen on a daily basis for pain and once or twice a month I'll take one 5mg hydrocodone for breakthrough pain. In addition, I currently get acupuncture and/or myofascial release therapy on an as-needed basis. However, when I first began those therapies, I received one or the other on a weekly basis for several years. Another important component of my treatment plan is pacing myself. Over the years I've learned what I can and can't do and how to tell when it's time to stop and allow my body to rest.
I hope I've answered most of your questions. If there's anything I've left out or need to clarify, just let me know.