At the National Pain Report, we have been thinking for some time about increasing the amount of coverage on fibromyalgia – which affects depending on who you believe between 6 and 10 million Americans – most of them women. We hear from readers who a thirst for more information.
We had heard of Dr. Ginevra Liptan who founded The Frida Center for Fibromyalgia in Lake Oswego, Oregon (just outside of Portland). It is the first private practice in the U.S. dedicated exclusively to fibromyalgia.
What drew us to her was her book published in 2011 – Figuring Out Fibromyalgia. And one other thing – she also has been diagnosed with fibromyalgia. She agreed to an interview which is so thoughtful we are dividing into two or three sections.
National Pain Report: “You come about your interest in fibromyalgia from a personal experience – you suffer from it yourself. How has that formed your work? ”
Dr. Liptan: “I started experiencing muscle pain and profound fatigue in medical school. At age 26, I suddenly went from being a very healthy and active to barely functional, exhausted, and in pain all the time. I saw several well-regarded medical specialists and no one could figure out what was wrong with me or give me any guidance. Ultimately my diagnosis came from a chiropractor! I started to explore alternative therapies, and finally found a few that really helped. Wanted to figure out if those therapies I stumbled upon would help others. Pretty much decided then and there to devote my career to studying and treating fibromyalgia.
I felt completely failed by the very medicine I was getting trained to deliver. I took a year leave of absence from school but what drove me to push forward and finish my training was knowing that there were so many patients out there just like me, who desperately needed help from their doctors, but weren’t getting it. I want to educate other doctors about this mysterious disease. I feel a huge part of my role is to dispel the stigma that some doctors still feel about fibromyalgia. I can speak “doctor” and can show them that this illness can happen to anyone.
Having fibromyalgia myself helps me to better understand what my patients deal with, and has made me really open-minded to alternative and “woo-woo” therapies of all kinds. If it helps, and isn’t harmful, I will support it!
My med school and residency training was purely western medicine, but since then I have studied integrative therapies through the Institute of Functional Medicine. I have treated fibromyalgia as a primary care provider, a pain specialist, and in the rheumatology clinic at Oregon Health and Sciences University. But it is my personal experience that gives me the unique perspective of a physician studying this illness from the inside.
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 Sciences 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).
National Pain Report: “Fibromyalgia is often misdiagnosed–what advice do you have for your fellow physicians about understanding the disease?”
Dr. Liptan: “What I tell other docs boils down to these 3 things:
1) Fibromyalgia is real. More than 6000 studies say so!
2) Fibromyalgia is common and can happen to anyone. (Yes, even doctors)
3) There is no “cure” but it is definitely treatable, although have to go further than 3 FDA approved meds to get maximum improvement.
Editor’s Note: Dr. Liptan is finishing another book on fibromyalgia: The FibroManual: A Complete Treatment Guide to Fibromyalgia for You . . . and Your Doctor by Dr. Liptan will be released by Random House May 2016, available for pre-order on Amazon now.)