Treating fibromyalgia with guidance for patients and physicians

Fibromyalgia is often an enigma for not only the person suffering from this condition but the physician treating them. Patients often feel like they are struggling to get help from their doctor – and doctors may struggle to accurately diagnose and treat fibro.

Thankfully, there are physicians like Dr. Ginevra Liptan, to provide a cutting-edge new approach that goes far beyond mainstream medical knowledge to produce dramatic symptom improvement. Not only does she write about treating fibromyalgia, she lives with the condition herself.

In her new book The Fibro Manual, Dr. Liptan lays out a program that incorporates clinically proven therapies from both alternative and conventional medicine, along with the latest research on experimental options. This, her second fibromyalgia book, is receiving very positive reviewers from readers. We caught up with Dr. Liptan recently and she shared some additional insights from her new book.

PP: Since your previous book came out in 2011, what are the major breakthroughs or changes in thinking about fibromyalgia that have occurred?

DL: In the time since my first book came out in 2011, fibromyalgia has become less of an “F-word” in the medical community, with doctors now being much more accepting of it as a legitimate diagnosis. When I was training in medical school in the early 2000s, it was common to hear other doctors say that they didn’t “believe “ in fibromyalgia, but thankfully that is rare to hear these days. The big challenge now is that doctors don’t know how to treat fibromyalgia. That is why I wrote The FibroManual – to provide patients with the right research-supported medical guidance to bring to their doctor’s attention, along with self-help guidance. It is exactly the book I needed when I was diagnosed with fibromyalgia during medical school.

PP: What do you think that those who have read many fibromyalgia books already will get from your book that’s different?

DL: The most unique aspect of The FibroManual is that it includes a portion with specific guidance for readers to share with their health care providers. No other book covers the role of the fascia, the connective tissue surrounding muscles, in causing fibromyalgia muscle pain. For me personally, myofascial release therapy, a form of massage therapy that focuses on the fascia, was incredibly helpful for pain and is what I credit with my ability to get back to medical school and complete my training. The FibroManual reviews many different ways readers can treat their own fascia to lessen their pain. Finally, the chapter on medical marijuana as a fibromyalgia treatment contains information not found in any other book out there.

PP: Readers seem to be using your book to educate their doctors – and you even provide a checklist for physicians. What is the biggest misconception physicians have about fibromyalgia? Where does the lack of knowledge stem from?

DL: 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? 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 primary care doctors 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. 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. Some useful 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.

PP: Some people who have read and reviewed your book talk about the step-wise approach you advocate…and avoiding a scattershot approach to trying anything and everything to impact their fibro. How important is it to be diligent and stick with a regimen to see relief from fibro symptoms?

DL: It is really important to try and be scientific about changes you make to determine which ones are actually helping. I recommend trying to make only one change at a time and tracking your symptoms. Human memory is best at remembering the immediate past and tends to be clouded by what we are experiencing right now. When you are dealing with poor memory from fibro fog it can be darn near impossible to recall how you were feeling yesterday, let alone two weeks ago! Tracking your symptoms will help you more quickly determine what works for you.

RELATED: How to deal with fibro fog

PP: Your book mentions four steps for fibro sufferers (Rest, Repair, Rebalance, and Reduce). How did you come up with these and can you give us a quick overview of each step?

DL: I had always treated fibromyalgia this way but I called it Steps 1, 2, 3, 4. As I was writing The FibroManual my mom suggested I think of a different way to label the steps that might be a bit more memorable! I realized she was right and renamed the steps the 4 R’s.

1. Rest: give the body a break from the constant pummeling by a hyperactive stress response by purposefully enlisting a relaxation response and by restoring deep sleep.
2. Once the foundation of Rest is in place, we add Repair, both structural and nutritional. The stress response weakens the body’s ability to break down and absorb nutrients, so we fix digestion. Muscle pain is eased with gentle movement, and myofascial release, a specialized manual therapy that targets painful connective tissue.
3. The next step is to Rebalance the problems with energy production, hormones, and inflammation caused by a chronic stress response.
4. Finally, Reduce any remaining pain, fatigue, or fibrofog by treating specific symptoms with targeted medications and therapies.

At the end of each chapter, I wrote action steps, so I recommend readers refer back to those steps as they work their way through the 4Rs.

PP: What is your advice for how a patient should use this manual to help their physician do a better job with treatment?

DL: I suggest asking them something like this: “I am reading a book that helps me with self-management tools for fibromyalgia. It also has evidence-based suggestions for doctors. Is this something you would be willing to partner with me on?”

PP: By following your steps, how have you been able to improve your own life with fibromyalgia?

DL: Improving my sleep quality, changing how I ate and exercised and getting myofascial release therapy helped me to improve my fibromyalgia symptoms and these still form the foundation of my treatment approach today.

PP: How optimistic are you about the future of fibromyalgia diagnosis, treatment and the quality of life of people who have it?

DL: Based on how far we have come in our understanding of what is happening in the body in fibromyalgia in the past decade, I am hopeful that the next decade will bring significant advances in treatment. But even now, there are definitely some treatments that can really help, but unfortunately, patients might really have to seek out information themselves and bring it to their doctors.

Dr. Liptan is the founder of The Frida Center for Fibromyalgia in Portland, OR. The center was founded in 2011 to provide integrative treatment for fibromyalgia patients. It is named for Frida Kahlo, an early 20th-century Mexican artist who suffered from chronic pain and is now thought to have had fibromyalgia. Due to its small size and overwhelming demand, it is currently closed to new patients. Dr. Liptan’s first book is Figuring out Fibromyalgia: Current Science and the Most Effective Treatments. Dr. Liptan serves as medical advisor to the Fibromyalgia Information Foundation and is on the board for the non-profit Mastering Pain Institute.