I’m excited today to bring you an interview with Dr. Ginevra Liptan, founder of The Frida Center for Fibromyalgia and author of “Figuring Out Fibromyalgia.” Dr. Liptan just released her latest book, “The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor,” earlier this week, and it’s already a bestseller in her category on Amazon. Congrats, Dr. Liptan!
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A quick review …
I had an opportunity to read an advanced copy of “The FibroManual” last month, and I have to say it’s one of the best fibromyalgia books I’ve read since my diagnosis. I’m sure we’ve all read our share of fibro books, but what makes Dr. Liptan’s special is she actually has fibromyalgia, so she knows our everyday struggles intimately.
In “The FibroManual,” Dr. Liptan shares her approach to fibromyalgia treatment, which blends traditional and complementary medicine. Each chapter ends with a bulleted list of action steps for us, as patients, to do on our own, as well as a list of suggested topics to discuss with our healthcare providers. For those of us who love our to-do lists (like me!), this makes it easy to implement the ideas she’s outlined in her book. At the end of “The FibroManual,” there’s also a comprehensive guide with research references that we can give to our healthcare providers, so they can feel more confident in our treatment plan.
I love how Dr. Liptan embraces both traditional medicine and complementary therapies, and she doesn’t shy away from controversial treatments, like opioids or medical marijuana. She also touches on some lesser known treatments; a few were actually new to me!
As many of you know, I’ve been struggling the past few months with increased pain, and my usual go-to treatments haven’t been helping very much. I’ll definitely be trying some of Dr. Liptan’s suggestions over the coming months and sharing my experience here at FedUpwithFatigue.com.
After you finish reading the interview, be sure to enter the giveaway! Two winners will receive copies of Dr. Liptan’s new book, “The FibroManual.”
An interview with Dr. Ginevra Liptan…
There are lots of medical professionals who have written fibromyalgia books, but yours is different because you actually have fibromyalgia. Could you share your fibromyalgia story with us?
In my second year of medical school I injured my neck while lifting weights, and that turned into persistent neck pain that never got better and progressively became all-over muscle pain, and then came the overwhelming fatigue. I remember my arms feeling too weak and exhausted to wash my hair, and I knew something was really wrong. But, as is the case for so many fibromyalgia patients, I saw doctor after doctor who told me all my labs were normal and suggested my symptoms were just due to depression. I had to drop out of medical school and take a leave of absence. I was fortunate to find a chiropractor who finally gave me the diagnosis of fibromyalgia and directed me towards some helpful treatments like myofascial release therapy. This is a massage therapy technique which involves slow, prolonged stretching that releases restrictions in the fascia, the connective tissue around the muscle.
Do you still have fibromyalgia symptoms? And how do you manage them?
Yes, I still have fibromyalgia symptoms. I struggle with jaw and neck pain, fatigue and intermittent bouts of fog. When I am taking good care of myself – eating well, doing regular exercise, doing myofascial release stretching and self-care, and getting enough sleep – I manage the symptoms pretty well. But whenever I get too busy and start eating lots of sugar, or skip doing stretches or my sleep schedule gets thrown off, I get hit with more fatigue and fog and pain. It is helpful for me to think of fibromyalgia as a chronic illness like diabetes – manageable but only with vigilant self-care on how you move, eat, sleep, and manage stress – and with the care of a knowledgeable health professional. (More on that later!)
The stress response is an automatic brain reflex that is commonly referred to as the “fight-or-flight response.” When a potential threat is detected, the stress response of the brain prepares the body to fight or flee by pumping adrenaline and tightening muscles. The stress response is an alarm reaction, the body’s answer to any kind of challenge or danger, triggered by a primal brain area whose only focus is on survival. Normally the stress response should only activate when there is a potential threat. However, in fibromyalgia, the stress response is continually activated and never stops, even though there is no threat. Imagine a smoke alarm that goes off incessantly although there is no fire.
A brain sending danger signals while sleeping does not allow itself to get into deep sleep, so patients with fibromyalgia have light, restless sleep. This has been confirmed by sleep studies that show fibromyalgia subjects don’t get into deep sleep and all night long show abnormal “awake-type” brain waves. This deep sleep deprivation leads to fatigue and poor brain function.
As part of the stress response, the brain also sends signals to tighten muscles in order to enable fighting or running. Studies have found that excessive firing of fight-or-flight nerves causes higher levels of muscle tension in fibromyalgia. Muscles and their surrounding connective tissue that are chronically tightened to respond to danger become inflamed and painful. The overactive stress response also causes increased levels of inflammation in bloodstream, impairs digestion and alters hormone balance.
You follow an approach called the “4 R’s of treatment.” Can you summarize the 4 R’s and why each is important?
The only way I have found to get lasting improvement in fibromyalgia symptoms is to systematically address the negative effects on the body of a chronic hyperactive stress response. My treatment approach does this in four manageable steps called the 4 R’s.
- First, 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.
- 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.
- The next step is to Rebalance the problems with energy production, hormones and inflammation caused by a chronic stress response.
- Finally, Reduce any remaining pain, fatigue or fibro fog by treating specific symptoms with targeted medications and therapies.
Why is “rest” the first R? Why is it so important for us to focus initially on calming our stress response and improving our sleep?
Since fibromyalgia symptoms stem from a hyperactive stress response, the foundation of treatment is taking action on a daily basis to instead activate the opposite reaction: the relaxation response. The relaxation response stimulates the rest-and-digest nerves that have positive effects on the body and gives the body a reprieve from the constant pummeling of a hyperactive stress response. Techniques to induce the relaxation response include deep breathing, gentle stretching and mindfulness meditation.
Despite our best efforts, once we fall asleep the fibromyalgia brain’s hypervigilance again takes over and causes light, interrupted sleep, wreaking havoc on the body. Specific combinations of medications and supplements can help override that stress response and encourage deep sleep, and this is where I see the greatest improvement in fatigue and pain. This is also the step in which patients have to work most closely with their healthcare provider to achieve discernible results. Restoration of deep sleep allows the body to obtain as much benefit as possible from treatments such as exercise or bodywork.
In your book, you mention that many of us with fibromyalgia have adrenal/thyroid/sex hormone imbalances, food sensitivities and/or low-grade infections. What impact can these underlying issues have on our fibro symptoms? And why is it important that we address these?
The hyperactive stress response pushes the adrenal glands to their maximum output, which over time leads to adrenal glands that are not functioning well. Adrenal gland dysfunction causes fatigue, low blood pressure and increased thirst. Specific treatments to support the adrenal glands are very effective in reducing these symptoms. The stress response also interferes with activation and absorption of thyroid hormones. Patients with hypothyroidism in addition to fibromyalgia often need a distinct regimen to get around this problem.
The lack of deep sleep and the chronic stress response in fibromyalgia both reduce your ability fight off infections, and many patients’ energy levels are dragged down by chronic subclinical infections. These smolder below the level of full-blown illness, but still aggravate the immune system and cause inflammation. The tonsils, sinuses, gums, teeth, intestinal tract and vagina are most common locations of subclinical infections. I have had several fibromyalgia patients whose symptoms improved after removal of chronic abscessed teeth or treatment for other protracted low-grade oral infections.
Another result of the stress response is a “leaky gut,” in which some food particles may enter the bloodstream and cause sensitivity-related inflammation. Food sensitivities are one of the biggest sources of inflammation in fibromyalgia and where we can make a huge impact on symptoms by changing our diet to avoid foods to which we are sensitive.
We’re all familiar with Lyrica and Cymbalta as fibromyalgia treatments, but in your book you discuss some other pharmaceuticals that aren’t as commonly known. Could you share a couple of your favorites?
- Tapentadol (Nucynta) is a relatively new medication that is similar to tramadol (Ultram) but stronger and with less risk of side effects. Although tapentadol has not been specifically studied for fibromyalgia pain, studies have found tapentadol effective for other types of chronic musculoskeletal pain. I have found this medication to be one of the most helpful fibromyalgia pain relievers. It acts both on the opiate receptors to reduce pain, but also increases norepinephrine and serotonin levels in the brain (similar to how Cymbalta works). Its effects are like a combination of oxycodone plus duloxetine (Cymbalta).
- Memantine (Namenda) is a medication that has been approved to treat Alzheimer’s dementia, but also improves fibromyalgia pain by calming down hyperactive pain signals in the spinal cord. One study found that memantine reduced pain in fibromyalgia over a period of six months, and subjects also reported improved cognitive functioning, which makes sense since the original purpose of the drug was to recover brain function in dementia. Quite a few patients of mine have registered significant pain reduction on memantine.
There’s a growing controversy over the use of opioids in our country. A lot of doctors will no longer prescribe opioids for fibromyalgia, but you seem to take a very common sense approach. How do you use opioids in your own practice?
Political trends and societal issues can have a huge impact on the practice of medicine, and lately nothing has been more controversial in medicine than the prescribing of opioids for pain. Most healthcare providers are unwilling to prescribe opioids for fibromyalgia. And it is true, in the few small published studies, daily use of opiates hasn’t been shown to work very well for fibromyalgia over the long run. This leads to medical journal articles stating such things as “opioid use for the management of pain in fibromyalgia is strongly discouraged and is not recommended by any current practice guideline.”
Here’s the problem with this type of blanket statement: These recommendations are based on the results of only a few small studies showing they were ineffective for fibromyalgia pain. None of these small studies assessed what I have found to be the most successful use of pain medications, which is when they are taken just as needed for flares.
In my fibromyalgia practice, I have found that patients do better when not taking opiates daily, but rather taking them just as needed for severe pain flares, ideally less than 10 days out of the month. This schedule limits the development of most of the negative side effects of opiates and allows medications to maintain effectiveness over time, while still providing relief during the worst pain episodes.
Your new book includes a “healthcare provider guide to fibromyalgia management” in the appendix. Why did you feel it was important to include that?
There is a lot people with fibromyalgia can do on their own to reduce symptoms, but they can only go so far without the help of a doctor knowledgeable about treating the disease, and those are few and far between. When my first book “Figuring Out Fibromyalgia” was published in 2011, readers often inquired if I knew a provider locally that could help them, and unfortunately my answer was nearly always, “No.” Clearly, the available medical expertise is vastly inadequate, and the need and desperation for help is huge. After seeing the incredible dearth of physicians knowledgeable about fibromyalgia, I realized the need to create a resource that could educate both patient and doctor. That’s why I included in The FibroManual a highly referenced healthcare provider guide – it contains all the information that medical providers want to see before prescribing a new medication or therapy.
Could you tell us about the Frida Center for Fibromyalgia? And are you accepting new patients?
The Frida Center for Fibromyalgia is my private practice in Lake Oswego, Oregon (near Portland). I founded the clinic with my husband, a myofascial release massage therapist. It is one of the only clinics in the country that focuses specifically on treating fibromyalgia. I named it after Frida Kahlo, a Mexican artist who is thought to have suffered from fibromyalgia herself. We are accepting new patients, and for those that live out of the Portland area, we offer a one-day consultation in which I spend several hours with a patient and develop a customized treatment plan with step-by-step guidance for both themselves and to work on with their local provider, based on my 4 R’s treatment plan. The one-day consult also includes myofascial release therapy – the most effective treatment for fibromyalgia pain I have ever found – and learning some self myofascial treatment techniques. You can find much more information at www.fridacenter.com.
In celebration of Dr. Ginevra Liptan’s book launch, we’re giving away two copies of “The FibroManual.” The giveaway will end midnight ET on May 13. There will be two winners, who will be selected using Rafflecopter’s random winner generator. I will contact winners via email on Friday, May 13. Enter below! Good luck to all!