05.05.2016

An interview with Dr. Ginevra Liptan, author of “The FibroManual”

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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!

An interview with Dr. Ginevra Liptan, author of "The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor" and founder of The Frida Center for Fibromyalgia.

(This post contains affiliate links.)

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 FibroManual by Dr. Ginevra LiptanIn your new book, you talk about the role of the stress response in fibromyalgia. Can you give us an overview of the stress response and how it contributes to our fibromyalgia symptoms?

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.

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Comments

  1. I AM ONE OF THOSE MEN THAT FEEL I HAVE FIBROMYALIGIA BUT HAVE BEEN TOLD THAT MEN DONT GET IT WELL I KNOW THIS IS WRONG BUT MY PROBLEM IS NOT THE FIBRO. BUT THE FACT THAT I AM EXPECTED TO WORK EVERY DAY WHEN I CANT EVEN GET OUT OF BED MOST TIMES I HURT SO BAD AND I AM SO WEAK I WALK AROUND IN THE FOG AND MISS TOO MUCH WORK I FEEL GUILTY BUT MOSTLY I AM STRESSED OUT BECAUSE I KNOW I AM GOING TO LOSE MY JOB MY INSURANCE SO THE FIBRO GETS WORSE BECAUSE OF THE STRESS. I DONT SLEEP AT NITE I DONT EAT THE RIGHT FOODS I KNOW ALL THIS BUT WHAT DO I DO WHEN I LOSE MY JOB MY INSURANCE AND THEN A PLACE TO LIVE NO ONE CAN HELP ME WITH THESE ANSWERS AND GETTING SSDI IS OUT OF THE OPTION BECAUSE THE GOVERNMENT DOES NOT SEE FIBRO AS A PROBLEM

    • Danille says:

      The government DOES recogonize fibromyalgia as a real condition, a real diagnosis … I believe men get this also, its just been found to be more prevalent in women … First you need to be properly diagnosed … You need to find a doctor who respects you and what your feeling … Someone that listens … If that doctor doesn’t work, you keep moving on until you find the right one … They are out there, trust me … It’s a long road but it’ll put your mind at ease just because they don’t believe this is just all in your head … It’s real …
      As for disability, you also have to be unable to work for a year or more to even qualify to apply for Social Security Disability … Most often when you apply for disability you will be denied the first time … They told me that right off the bat … I was denied my first time … I kept fighting … It took me a long time … It WILL take awhile, but, don’t give up … I’m not going to sugar coat it … It’s a difficult, long and stressful process … I would recommend you check into SSI also … That is different from SSDI … Go to the Social Security website … There is a TON of info to help you to understand the process …
      I wish you the best and I hope you get some answers asap …

  2. Exciting! I hope I win a copy.

    Interesting points she makes. I asked my doctor about checking on my adrenal glands, and she said she doesn’t know how to check that. ? I’m not sure why a physician doesn’t know how. I’m currently switching providers, so do you have advice on how I should go about checking my adrenal glands?

    I’m allergic to Tramadol. I don’t know if allergic would be the correct term, but I get anxiety from it. So bad, in fact, that my throat feels like it’s closing up, my heart races, and I feel sick to my stomach. It was 2.5 mg, and I’m too worried to take it again. I usually take it when my pain is past the essential oil use.

    • Donna Gregory/FedUpwithFatigue.com says:

      There is a lab test that your doctor can order through LabCorp that tests for Addison’s, which is complete adrenal failure. It’s basically a waste of time test b/c it only tells a doctor when your adrenals have gone kaput (and if that happens you’d need to go to the hospital anyway). Instead, I would look into adrenal saliva testing. You can buy the test kits online and do it yourself or most any functional medicine doctor/naturopath/etc. would be familiar with it. The saliva tests require you to collect saliva at different times of the day and will tell you if your hormones are at the right levels based on time of day. Many people w/ fibro have underlying adrenal fatigue. My test showed my adrenal hormones are low in the morning when they should be at their highest, so I have some work to do on healing them.

  3. Gina Weeks says:

    What a great interview! Thanks for this post — the book sounds amazing!

  4. Cherell says:

    I was told by a specialist that fibromyalgia is all in the mind.

    • Donna Gregory/FedUpwithFatigue.com says:

      Well, it depends on what your specialist meant by that comment. If he/she meant that we’re making it all up in our head and that our symptoms aren’t real, then you need another specialist! Fibro is a very real condition and it existence has been proven by thousands of studies. But if he/she meant that fibro originates in the brain as a result of an overactive central nervous system, then yes, your specialist is correct. Current research indicates fibro is a result of a brain that’s not properly processing pain signals. Hope this helps.

Trackbacks

  1. […] An interview with Dr. Ginevra Liptan, author of “The FibroManual” (and a fellow fibromya… […]

  2. […] An interview with Dr. Ginevra Liptan, author of “The FibroManual” + giveaway […]

  3. […] An interview with Dr. Ginevra Liptan, author of “The FibroManual” + giveaway […]

  4. […] Magnesium lotion – My fibro pain tends to get worse as the day progresses, so it can be brutal by bedtime. On my worst days, I always slather my entire body in magnesium lotion before going to bed. It usually takes the edge off enough for me to fall asleep. I’ve used Morton Epsom lotion for years, but the company just discontinued it. (Some Walgreens locations may still have some bottles on clearance. They are usually located beside the Epsom salts.) When my supply runs out, I plan to try Ancient Minerals, which is recommended by fibromyalgia doctor and fellow warrior Dr. Ginevra Liptan. (You can read my recent interview with Dr. Liptan here.) […]

  5. […] An interview with Dr. Ginevra Liptan, author of “The FibroManual” + giveaway […]

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