By Ginevra Liptan, MD
Welcome to my blog, in which I bridge the worlds of fibromyalgia patient and doctor. My personal experience gives me the unique perspective of a physician studying fibromyalgia “from the inside.” Since my diagnosis in medical school, my hope has been to act as a translator between the worlds of doctors and patients.
Because so many health care providers still struggle to help their patients with fibromyalgia, patients often have to take it into our own hands and bring information about new treatments to our doctors. Fibromyalgia patients recognize that their doctors don’t know how to help them, naming their highest priority as better-educated health care professionals in one survey. This leaves patients desperately searching for answers on their own.
Bridging the gap between doctor and patient is my over-arching goal with everything I write, including my new book, The FibroManual. And this blog is an extension of that, keeping you updated on new treatments, new ideas and new research. I also want to educate other health care providers on what fibromyalgia is like, how to treat it better, and how to be more understanding of what a day in the life of a “fibromite” is like.
I welcome your comments and suggestions on topics to cover for FM. If there is a topic or question that comes up for you personally in dealing with fibromyalgia, I guarantee hundreds of other patients have the same question and want to know more about it.
(Here’s where I have to remind you that I legally can’t offer any specific medical advice online, but will write in general terms about topics and questions that come up frequently on social media and comments here.)
The first really big question I want to answer today is this: More than 6,000 research studies have now illuminated the processes in the body that cause fibromyalgia, so why don’t doctors know more about managing this very common illness? Fibromyalgia is described in medical journals as “perplexing,” “mysterious,” and “confusing.” Primary care providers (PCPs) report uncertainty about how to treat this illness, with one study concluding that "diagnosing and managing fibromyalgia is challenging for physicians."
Partly it is due to fibromyalgia’s status as an orphan disease, claimed by no specialty but awkwardly straddling the fields of rheumatology, neurology, and pain medicine. The majority of fibromyalgia care falls to the overwhelmed PCPs who don’t have time to go searching for new treatment ideas among the sea of medical publications.
There is also always a delay between research findings and adoption into clinical practice. Dr. Kim Dupree Jones, one of the leading fibromyalgia researchers in the world, sums it up nicely: “The science supporting fibromyalgia as a real disorder has rapidly advanced over the past decade. Unfortunately there is a lag between what scientists know and what your health care provider may know. In academia, we call this the ‘research-to-practice gap.’”
The usual lag between research and clinical practice is exacerbated by the lack of press time for fibromyalgia in the big medical journals. Since 1987, only one fibromyalgia study has been published in the New England Journal of Medicine, the most widely read medical journal in the world. For an illness that affects an estimated 10 million American, this is shameful. Fibromyalgia is the 14th most frequent reason for visiting a PCP, more common than sore throats or urinary tract infections.
Some useful fibromyalgia treatments are neglected because they utilize medications in non-standard ways, like the dementia drug that was recently found to dramatically reduce fibromyalgia pain and brain fog. Other treatments are ignored because they come from the world of alternative medicine. Doctors simply don’t read massage therapy journals like the one that published a large European study that found myofascial release, a manual therapy that targets painful fascia, provided long-lasting relief of fibromyalgia pain.
But the harried PCP does not have time to actively search out studies on new treatments for fibro, so research has to be brought to their attention in some other way—namely by their patients. So keep reading for more treatment ideas. Upcoming topics include low-dose naltrexone, medical marijuana, IV ketamine, and fibromyalgia health coaches.