About the Author
Excerpt. © Reprinted by permission. All rights reserved.
Liptan / THE FIBROMANUAL
Figuring Out Fibromyalgia for Myself
At the end of my first year of medical school, I was doing crunches at the gym when I felt a muscle in the front of my neck rip, causing intense pain. I had injured muscles before, and I figured it would heal quickly. But as days turned to weeks, it didn’t. My neck burned constantly and felt like it could no longer hold up the weight of my head. The only relief I got was when I wrapped a heating pad around it. A chiropractor found mild abnormalities in my cervical spine and made some adjustments. I started getting regular chiropractic treatments, because they were all I could think to do, and they helped a little.
That summer, I was achy and tired all the time. I took a part-time babysitting job, and working for just a few hours left me exhausted for days. I woke up in the morning with a sore neck and back, which hurt all day. I frequently felt stiff, weak, and lightheaded. It was as if all the energy of my body and mind had been sucked out. I went to see my primary care doctor, who prescribed a muscle relaxant, which did not help. The pain progressed to my upper back—an ache between my shoulder blades that would not go away. My spine hurt, my skin hurt, everything hurt. I was sleeping poorly, tossing and turning, and I woke every morning feeling more tired than before I went to bed. I felt too weak to even lift my arms to wash my hair in the shower.
One day my hips started aching so much that I couldn’t do anything but lie in bed and cry. I was sure there was something really wrong with me, so I went again to my doctor. She drew blood and sent me to a rheumatologist. The rheumatologist ordered X-rays of my neck and hips and assured me they were completely normal.
“So why do I hurt all the time?” I asked.
“I don’t know, but you don’t have arthritis,” he responded.
I returned to my doctor to find that my labs were all normal. My doctors had no answers for me and nothing to offer.
I started my second year of medical school as a total wreck. And then a bit of grace fell my way. My chiropractor sold her practice. I tearfully told my entire story to the chiropractor who took it over, and he suggested that I might have fibromyalgia—the first time anyone had even mentioned it to me. He checked my tender points, and registered “exquisite” tenderness in at least twelve of them, confirming the diagnosis. He recommended that I pick up what he called “the bible of fibromyalgia,” Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual, by Devin Starlanyl and Mary Ellen Copeland. I spent weeks reading and rereading it, trying to convince myself that I did not have the condition, but unable to avoid the fact that it described me perfectly. “Chronic” was such an awful word. And fibromyalgia had such a stigma among doctors—even among my fellow medical students—that I couldn’t quite believe I had it.
I began doing research in my medical textbooks, on the Internet, and in bookstores. I quickly became discouraged. Western medicine had little to offer beyond antidepressants and exercise. I was already on antidepressants, and exercise made me feel worse. So I ventured into the confusing world of alternative medicine, perusing countless theories and treatments online, many of which conflicted directly with what I was learning in school. I was overwhelmed by the different ideas I encountered about the causes of fibromyalgia and how to treat it.
Was it yeast overgrowth? Low thyroid hormone production? Did I need to cleanse my body of toxins? Do a raw-juice fast? Use guaifenesin to reduce calcium phosphate deposits in the muscles? Was I deficient in some vitamin that I needed in megadoses? Did I need a macrobiotic diet? Raw foods? Alkaline foods?
Compounding my frustration was the fact that I was so fatigued I didn’t have the energy to contemplate major lifestyle or dietary changes. Acupuncture didn’t help, and massage made me feel more achy and tired. The latter half of my second year of medical school was basically a very expensive correspondence course. I rarely felt well enough to make it to class, and survived by getting lecture notes from friends, studying at home, and showing up only for the occasional required seminar and exams.
I finally accepted that I had fibromyalgia. I felt hopeless and helpless. I told myself that it wasn’t fatal—it wasn’t cancer—but it still felt like a death sentence. It became clear that there was no way I could make it through the rigors of the third year of medical school, with its eighty-hour workweeks and high levels of physical and emotional stress. I took a leave of absence.
Stumbling into Help
During my yearlong leave I read every book I could get my hands on about fibromyalgia and tried every treatment I could. I knew exercise was supposed to help, so I kept trying new regimens, only to stop after injuring myself. After diligently following the guaifenesin protocol described in What Your Doctor May Not Tell You About Fibromyalgia: The Revolutionary Treatment That Can Reverse the Disease, by R. Paul St. Amand and Claudi Craig Marek, I was devastated when I got no benefit from it. I took thousands of dollars’ worth of useless supplements. I tried IV therapies with a naturopath, and saw a top holistic MD in Boston. I did colonic hydrotherapy and fasted and did detoxifying diets. I tried every type of massage I could find, but each session seemed to make my pain worse. I journaled and saw a therapist and tried to meditate. None of it helped, and midway through the year I was feeling hopeless and preparing to drop out of school completely.
Then I read Claire Musickant’s Fibromyalgia: My Journey to Wellness. Musickant describes her dramatic reduction in symptoms after testing for food sensitivities and eliminating the offenders. I knew it was something I needed to do; it felt right. I had a rare rush of hope and excitement as I called the lab to find a practitioner in my area, a naturopath. She told me the test was expensive. I hesitated and asked her if she had found that it helped people with fibromyalgia. “Oh, yes,” she said, “and it helped me. I had fibromyalgia and am now ninety percent better.” She had fibromyalgia—past tense. These were possibly the most beautiful words I had ever heard. She was the first person I had talked to who had even suggested that fibromyalgia was something one could recover from.
I did the blood test and started to avoid the recommended foods and chemicals. After about two weeks, I realized that the all-over body ache I had grown so accustomed to was gone. Now it only hurt when someone actually pressed on my muscles. It didn’t feel as if I constantly had the flu. I had the energy to grocery shop, to cook, to exercise. I was thrilled. But my sleep was still light and restless and I woke up exhausted every morning. My neck and arm pain flared up easily with exertion or repeated motion.
A massage therapist recommended I try a manual therapy technique, the John F. Barnes’ Myofascial Release Approach, which involves slow, prolonged stretching that releases restrictions in the fascia, the connective tissue around the muscle (see chapter 12 for further details). After several sessions I experienced dramatic pain reduction in my arms and neck. With ongoing myofascial release therapy, I felt well enough to return to medical school, but I remained fatigued all the time. Things really fell apart during a month of night shifts in the hospital. I couldn’t sleep during the day and developed severe insomnia. I dragged myself once again to my primary doctor, who prescribed a sleep medication.
Suddenly everything shifted. I was getting deeper sleep and feeling more rested when I woke up. The combination of improving sleep quality with medication, avoiding inflammation-producing foods, and myofascial release treatments got me through the grueling remainder of medical school and residency training. And it forms the core of my treatment approach to this day. Over the years I fine-tuned my technique, learning other ways to improve deep sleep, treat the fascia, and warm up so that exercise helps and doesn’t hurt.
As I continued my medical training, I was able to better assess the thousands of studies and articles written about fibromyalgia. I began to put together why certain treatments had helped me so much, while others did nothing at all. Based on my own relief with myofascial release I was convinced that the fascia was the source of fibromyalgia pain, and my research has focused on it ever since. At Oregon Health and Science University I conducted a study that found myofascial release therapy was more helpful than standard massage for fibromyalgia symptoms (Liptan 2013). I’ve also published articles on exercise and self-management strategies (Jones 2012; Liptan 2010; Jones 2009). In 2011 I founded the first private practice in the United States dedicated exclusively to fibromyalgia, the Frida Center for Fibromyalgia, in Lake Oswego, Oregon.
For years after my diagnosis I felt bitter toward all the doctors who had not been able to help me. It was so frustrating that again and again I had to find my own way, wasting money on ineffective treatments because I had no guidance. My resentment faded, though, as I continued my medical training and practice and realized that physicians in this country are working within an untenable system. Our current medical framework is just not set up well to deal with chronic and complex illnesses like fibromyalgia. And while most doctors do really try to help their fibromyalgia patients, they simply lack the expertise or tools to do it.
I told no one about my diagnosis, even my closest friends. I only revealed it during my final presentation to colleagues and teachers on the last day of my residency. I felt as if I was “coming out” and revealing a whole secret life. I wanted to show my fellow doctors it is a real disease that can happen to anyone. Since then, I have focused a large part of my career on educating other health care professionals about this invisible illness. I am done feeling ashamed. My hypervigilant nervous system keeps me attuned to subtle changes in other people’s emotional states and in my environment. It has helped me to become a better doctor. And my intimate experiences with pain and suffering have made me a better human being.