Fibromyalgia – A Q & A with Dr. Liptan

Fibromyalgia – A Q & A with Dr. Liptan

By Ed Coghlan

Ginevra Liptan, MD

Ginevra Liptan, MD

Dr. Ginevra Liptan’s latest book on fibromyalgia was released this week. The Fibro Manual—A Complete Fibromyalgia Treatment Guide for You and Your Doctor is published by Random House.

Dr. Liptan, who has written for the National Pain Report, agreed to a short interview about fibromyalgia, which she first developed while she was in medical school, and her new book.

NATIONAL PAIN REPORT: “You are a physician who treats fibromyalgia and has fibromyalgia—how would you characterize the state of fibromyalgia treatment today?”

DR. LIPTAN: “Medical treatment of fibromyalgia has made huge progress in the past decade. When I was diagnosed in medical school 15 years ago, many doctors still questioned whether it was a “real” illness. These days, that issue has been put to bed and nearly every doctor these days does believe it is a real illness- however they still don’t know much about how to treat it effectively.”

NATIONAL PAIN REPORT: “We note in your upcoming book at the end of each chapter you provide the reader with things they can talk with his or her doctor about…do you think the physicians are better understanding how to recognize (and treat) fibromyalgia?”

DR. LIPTAN: “Physicians are definitely better able to recognize and diagnose fibromyalgia these days, but really lack any idea how to treat it beyond the 3 FDA-approved medications (Cymbalta, Savella and Lyrica). That is why I included topics for each chapter so patients could discuss new ideas with their doctors. And then I included a health care provider guide at the end of the book that patients can share with their physician as well.”

NATIONAL PAIN REPORT: “Why are women more prone to develop fibromyalgia than men?”

DR. LIPTAN: “The truth is that we don’t really know. It may have to do with differences in how men and women process pain signals in the brain, or may be because women are more likely to experience traumas like sexual assault in key periods of brain development in childhood and adolescence.”

NATIONAL PAIN REPORT: “That’s not to say that men and young people are immune, does it? You’ve said in the past that it tends to be underdiagnosed in men.”

DR. LIPTAN: “Fibromyalgia remains underdiagnosed in men, partly because men are less likely than women to go to the doctors, let alone talk to them about issues like pain or fatigue. It is a very common diagnosis in males who have experienced combat- nearly as common as PTSD. So within the Veterans Affairs and military healthcare system it is becoming a more common and recognized diagnosis, but in the civilian world doctors just don’t think about it when talking with male patients.”

NATIONAL PAIN REPORT:” Not enough restorative sleep, too much stress, not enough exercise, eating the wrong things—all contributors. If there’s one thing more important than the other for folks who are trying to address this?”

DR. LIPTAN: Sleep is by far the most important area, and this is where patients need to work most closely with their physicians. Unfortunately, most doctors- even sleep doctors- do not understand the importance of increasing restorative sleep in fibromyalgia. So patients will need to bring it up themselves, because improving sleep quality is the foundation for all other fibromyalgia treatments.”

Dr. Liptan founded the Frida Center for Fibromyalgia in Oregon and devotes her practice exclusively to fibromyalgia.

To order her book on Amazon, click here.

Follow her on Twitter: @drliptan

Follow the National Pain Report on Twitter @NatPainReport, @edcoghlan

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Authored by: Ed Coghlan

There are 13 comments for this article
  1. Steve at 10:43 am

    Thanks to you, also, Cayce for talking about the unending and life changing pain. You know things are down the tubes when I spend the time here commenting to people I don’t know, however thoughtful they are. The bottom line is pain so bad you can’t really do anything, don’t commit to anything, and don’t see any hope on the horizon. I’m doing the stuff you aren’t, with no effect…junior opiates, failed mmj, cranial electrical stimulation, etc. if I didn’t have relatives who don’t understand and would never get over it, I’d tap out with some old meds and go rest in an urn that says ” no more pain.”

  2. Cayce at 7:55 am

    I’m not sure where these great strides and advancements are being made, but it certainly isn’t translating into regular society with any regularity. True that all of my doctors have been believers and have treated me with what they deemed was dignity; however, not a one of them have treated me with the sincere soberness and gravity that I believe my condition deserves. So they all want to remind me that it’s not going to kill me, and yes I tell myself this a million times a day in order to get anything done or just hang on another day, hour, minute, but I very well might just kill me and consider doing so quite often and this is since doing habitual daily meditation, joining a group, doing talk therapy, and finding a balanced dose of dopamine heavy antidepressants that I can handle. Take that seriously, don’t smirk when I disclose these thoughts and feelings to you, even if I seem balanced and rational when I do so, it’s because doctors have taught me that they do not tolerate nor respect patients who show emotion.
    It is patronizing to hear that it’s not going to kill me, when clearly it might through the hardship it causes in my life.
    It’s also patronizing to hear that I need more & better rest, better diet, more & better exercise, to not isolate myself so much, to push through the fatigue and not nap in the afternoon, to try to work and not go out on disability if possible (too late), to get outside more, to engage in mind/body practices, to seek out alternative therapies, to do more physical therapy, to really work harder with my talk therapy and try CBT.
    Are you serious? I get that you’re doctors & experts & in this case, a doctor who also has fibromyalgia, get real. Let’s count the ways in which I have tried your advice, have not gotten “better” (except marginally, which doesn’t help me get off disability and back to work)
    All fda approved drugs, all toxic rubbish, keep em
    I’ve lost the weight that those drugs added, since I wasn’t overweight to begin with (35lbs. I’ve had to lose)
    I’m a vegetarian
    I don’t drink/eat anything white
    I do yoga, tai chi, and walk as am able but experience overwhelming PEM each and every time and have for years & still do it
    I meditate several times daily, including as I go to sleep
    I don’t take opioids
    I don’t take pain meds
    I don’t live in a legal mmj state
    I cook nearly everything I eat
    I get out of bed every day with no meds
    I take my freaking Welbutrin without fail
    I quit smoking more than 6 months ago
    I drink enough water to power the Hoover dam
    I sleep on mattresses expensive enough to feed a third world village for many years
    I take vitamin C & CoQ10 & 5htp
    I hurt everywhere all of the time. I have combo headaches that would bring down an elephant that I do not medicate lest I be considered a drug addict. I cannot think, sit, stand, read, enjoy a movie, bend, reach, drive, shop, play cards, write an angry Haiku, make change, do math that doesn’t require fingers, answer direct questions from strangers if there’s background noise and bright lights and odd smells. I’ve lost my ability to live independently and well. And it’s somehow my fault because I don’t try hard enough to meet the standards of diet, exercise, sleep, mind/body wellness, blah, blah blah… I call bull***t.
    Just because doctors have been shamed into admitting and recognizing that this is a real and debilitating illness doesn’t mean they know a damn thing about it. And from what I gather, the people who do the best to manage it, have a ton of money, respect, and doctors who will prescribe what they want (yeah I’m talking about pain meds for breakthrough or weed because they can).
    Until everyone is on the same page about how actually serious this illness can be, then we, as a group are still pretty well screwed, whether some doctor has it, writes a book about it, and makes a ton of money doing so.

  3. Steve at 6:57 pm

    Somehow just got this today, all good comments but Frank’s comments greatly mirror my own experience. Well said, Frank. And HJ writing letters to her doctors in that manner…much better approach than my nasty letter to a doctor, with a copy to the chief medical officer.

    GLTA suffering with fibro.

  4. HJ at 1:21 pm

    TENS = Transcutaneous electrical nerve stimulation

    https://en.wikipedia.org/wiki/Transcutaneous_electrical_nerve_stimulation

    You attach the pads of the device in an X over where your pain is (middle of the “X” marks the spot). Two wires branch off each lead and they become the ends of each line of the “X”.

    You really need a physical therapist to help you set it up – to adjust the settings. I have a simple device with just four leads. Tuck it in my pocket and try to hide the wires. It does help ease muscle spasms for me. Turn it up too high and it’s intolerable. Feels like pin-prick zaps. It’s helpful, but when you live alone, applying it to your back by yourself is tricky and a bit exhausting. You buy replacement pads once the sticky goo is no good.

    A physical therapist can set you up in the office with their machine to let you see if you like it. You may have to have your doctor order them to give it a try. Then, you order your own machine online or off a durable medical equipment provider. Eh… I really wouldn’t try to order one and set it up myself, tho. It’s confusing and a bit frustrating, and you might end up thinking it won’t work for you when if it was set up correctly, it would be helpful after all.

    Oh, and the batteries are rechargeable, so sometimes it runs out of juice.

  5. Frank Taylor at 11:56 am

    I’ve read the modern version of the Hippocratic Oath over at Wikipedia; it fills one with hope that all physicians, while practicing medicine, no matter what the affliction of their patient, will be as honorable and well-intentioned as it calls out in that pledge. That is so far from the truth in my case as to be disgraceful and damning on the whole profession. Sorry, I’m a bit bitter.

    Since no Rheumatologists in my area will see Fibro patients (I found out later) and the physician that I dialed out of the phone book suspected Fibro (without telling me), I had to drive four hours to UVA’s Medical Center to see one. I could tell instantly that this young man wanted to be anywhere but in that exam room. From his demeanor I pitied him more than someone like myself….someone full of unexplained aches and pains. His exam was curt and frivolous to say the least, consisting of some basic questions and a tap on some joints for reflexes. Then I was told to go, even though I found out later that he had determined that I had Fibro, that was not something he deemed necessary to explain to me, possibly in an effort to ward off having to answer a multitude of questions on what, how, why…etc. That was left to the doctor who referred me.

    When I returned to the equally rude physician who had sent me on the 8 hour round-trip, his exact words were, “Congratulations! You have Fibromyalgia!” For a moment I thought I’d won a bonanza of some sort. Although I had heard the term, I had no clue as to what it was or what it meant. I asked him to explain the ramifications. “It means you’ll have a nearly impossible time getting on disability! Good luck with that!”

    Fibro isn’t like cancer; something that will slowly and horribly eat away at you until you die…..it’s nowhere near a death sentence. But it is a life sentence. Something that will be with you night and day, almost, I imagine, like the prisoner pacing in his/her cell with the guilt of a horrendous crime. There’s a slow awakening to the realization that life as you’ve always known it is over. There will be no more travels to distant locales, gone are the romantic evenings with your mate in some mountain lake hideaway. From now on, life will be spent dealing with ever-present pain that appears in the unlikeliest of places, like a phantom….now here, now there, always moving, never able to be caught and suppressed, like a painful breeze, ever-changing directions.

    Like so many doctors will do, the physician plied me with pills of every shape and color. SSRI’s, SNRI’s, Neurontin, muscle relaxants, and so on. I made it one day on that toxic mix until I awoke with intense suicidal ideations, unlike anything I’d ever felt. Suicide was the only way out, or so these pharmaceuticals tried to convince me. And trust me, I’ve never, ever felt suicidal in my life. I threw them all away. Modern medicine’s answer for the debilitating condition of Fibromyalgia is simply a path of fortune for the makers of these poisons, nothing more. That’s not to say that some may receive relief from some of their conditions, but from what I’ve read in comment sections, I’m not an outlier here.

    I argued with this doctor over whether or not I was depressed. Now I ask you….who better to know than the patient? I told him I was definitely suffering from anxiety, as I now know many with this affliction do, but that I was dealing with my condition in the best manner that I knew how, and that I was most assuredly not depressed, therefore I did not want these neurological agents thrust on me. Later, when I found another physician, I requested my chart from the original physician and found that he had depression listed as a leading cause of my affliction.

    Equally disturbing is the fact that while I explained to him that I had horrible anxiety and would suffer severe spikes in blood pressure from out of nowhere, sending me to the ER 14 times in as many months with BP readings of 230/140, he refused to prescribe sedatives due to their dangerous nature, even though 14 ER doctors told me to find a doctor to prescribe me sedatives, as I was maxed out on BP meds and sedation was the only adjunct at that juncture. The irony of his conclusion of the dangers of benzos in the face of life and death BP readings after the meds he’d prescribed is too deep to comprehend.

    I hold out hope against slim odds. I believe that Dr. Jarred Younger at the University of Alabama Birmingham is on track to make a difference with this affliction. He’s definitely putting his all into his research on the subject, and has put together a dedicated staff of researchers who are making strides. He has a You Tube presence, if you’d care to follow his work. By the way, he’s the doc who did the clinical trials on Low Dose Naltrexone. I wish there were many more of his ilk.

    In the mean time, I attempt to get through every day, I know that’s a sad statement, but it’s the truth of the matter. Let’s all hope that researchers find some real relief for this horrid affliction and that the medical community pulls its collective head out of its ass and comes around to not only treating us with respect, but also in treating us with remedies that do more good than harm.

  6. Dave at 6:12 pm

    No doubt folks in the medical field are “true believers” that see through rose colored glasses and make too much out of what they believe and do and too little about what they dont know and dont do. This is true of fibro today-nd this positive bias of doctors and their industry gets in the way of real progress for people suffering from fibro. Its unfortunate they are so challenged when it comes to having doubts and sober anxiety when it comes to “progress” in their field.
    Doctors are the fish that are the last to discover the water and cannot be a judge in their own defense. So when a doctor or insurer starts to boast about progress in pain care- my critical faculties become suspicious.
    As someone who had fribro for 4 years in the late 90’s- I have not seen what is cause for celebration for people with fibromyalgia. In fact there seems to be more confusion today about fibro then there was in the 1990’s. There remains a great lack of cohesiveness amongst health care professionals and with other segments of society when it comes to fibro-and so the whole system is terribly disjointed and adds to the burden of fibro. People in fibro serve the health care system more then the health care system serves them.
    Its time for people with fibro to see through the mess that professionals and government has caused them and call for real reforms and more caritas, dignitas, humilitas and sinceretas in fibro care- and doctors, of course dont care enough to even know what those terms mean.

  7. Jean Price at 5:14 pm

    Unfortunately, Dave…I believe you are correct! Unfortunate for those who live with fibromyalgia, that is! When I first read this article, I had just gotten out of bed after three days with some GI bug, and it seemed to make sense and be hopeful. I’m afraid I merely transferred my own hope of being out of bed to some of it though! As I talk to and follow friends with this disease, it is anything but hopeful and clearly diagnosed and properly attended. That’s not really happening, is it?! I know areas of the country differ, perhaps that is some of the up note of this article. But I believe the truth lies more in the invasive, oppressive, stigma of invisible pain…and most doctors are no better than the general public in dealing with this. Or worse, since they practice acute care models where they are the expert, they can fix the patient, and if the patient is not fixed….then the patient becomes the problem! Pain causing conditions need more of a teacher/peer model of health care, to see what works best for the individual and to not abandon them. I don’t see much of this in health care, sadly. Some days I think voodoo or an exorcist might do just as well! Obviously being sick AND being in pain didn’t impact my sunny disposition, did it?! Not!

  8. HJ at 1:27 pm

    I can’t help but feel the assessment on the “State of Fibromyalgia Today” glosses over so many horror stories. Sure, it’s hopeful and positive and we need hope and positivity but my patient-experience has been so poor that I prefer not to mention or downplay the fibromyalgia.

    Fortunately, I’ve learned that my fibromyalgia seems to flare up when I’m sleep-deprived. And I get sleep-deprived because I have a more “primary” condition: Sleep apnea. My sleep apnea diagnosis came about 7 years after my fibro diagnosis. My fibro diagnosis took about 7 years. I won’t go so far as to say that I lost 14 years of my life, but I will say that I was white-knuckling it. I was afraid I was going to lose my job, my cognitive issues impacted my self-confidence at a time when I was fairly new to the workforce, and I was literally afraid that I’d collapse, not to mention that the pain would distract me and sometimes drive me to tears in the office restroom or even at my desk.

    I still have osteoarthritis in so many joints and cervical spondylosis. The quality of that pain is so different from fibromyalgia pain. It’s much more predictable and localized. I wouldn’t be able to manage without tramadol, mobic , lidocaine patches, aspercreme and baclofen. I have other non-pharmaceutical treatment modalities, but during my workday I can take a pill if I need to whereas I cannot take a hot soak in Epsom salts or (effectively) self-massage… tho I do use a TENS unit if I need to on very rare occasions. It’s not as discreet as I would like and can be distracting.

    But to go to a new doctor and say easily and openly that I have a fibromyalgia diagnosis is still a crapshoot. I had a neurologist neglect to tell me that my back hurt because I had a torn lumbar disc and say my pain was fibromyalgia to go back to my rheumatologist (who told me the pain was from the torn disc). I had a podiatrist who didn’t want to make orthotics for the arthritis in my foot/turf toe/plantar fasciitis. Why? Because I had fibromyalgia, I “would hurt anyways!” I asked him what he’d do if I didn’t have fibromyalgia, and he said, “I’d write you a script for orthotics.” So, I argued until I got the script. I had a rheumatologist who said I was “lucky” that he would treat me because he said I was depressed and “most doctors would run away from a depressed patient.” (I dumped him and found someone who I truly was “lucky” to have helping me).

    And how did I get diagnosed? I saw a rheumatologist whose advice to me was to exercise more and take naproxen sodium. Then, he wrote in my medical records that I had fibromyalgia and CC’d a primary care doctor who insisted I take an antidepressant and stop asking for a sleep study (which would have gotten me my sleep apnea diagnosis). According to her, I wasn’t exhausted or tired… I was JUST DEPRESSED.

    I got in a car accident out of town and saw my mother’s doctor who started asking bizarre questions about sleep and who touched all these places on my body and I was surprised to answer that yes, they did hurt (much to my surprise!) I was confused and a bit angry, because I was there for a car accident and he’s asking me these strange questions.

    He didn’t know he saved my life when he told me the name of the illness that every other doctor disregarded. After years and years of placing my hope in the medical establishment, sometimes being treated what I can only be call ABUSIVELY (I wish I could replay some of those doctor visits for someone else, because people would have to see it to believe it), finally… someone realized I was suffering and needed help. I actually wasn’t forthcoming with that doctor at all. Why? That was the last time I was going to see my family again. I came home for Christmas to say good-bye. I didn’t know how I was going to do it, but when I got back home, my suffering was going to end. I wasn’t going to have to go through losing my job, losing my apartment, going back home to live with my parents… giving up on the life I’d worked so hard to achieve.

    There was a name for what I had. There might be treatments… there was HOPE… what doctors had stolen from me.

    I’m bitter. But I also have wonderful doctors now, who I appreciate with all my heart. You know what I did? After I got treatment, I wrote letters to the doctors who tossed me aside. I knew I couldn’t give them an excuse to put another psychological label on me to hide their own unprofessional behavior, so I wrote them with an update how well I was doing now that I had a diagnosis and was receiving treatment. I wrote that I no longer feared losing my job because my symptoms were so disruptive before I was treated.

    Maybe the next person will be treated with some compassion and won’t have their hope stolen away. It’s more likely to me that doctors who can treat people the way they treated me will NEVER learn to be compassionate or to listen to a patient. There’s something deeply, inherently wrong with them and they shouldn’t be in the line of work they chose. It wasn’t just ignorance — there was vitriol and contempt in the way they treated me.

  9. Polgara at 8:50 am

    Just want to say, that those meds mentioned are out of Hell! See, I’re read there are at least two types of fibro: a) those getting some benefit from working out, doing exercising and moving outdoors or going to gym and b) those if doing that ^^ are getting more ill with no benefit at all and even more pains. The same is with meds. There is type a) getting help about mindgamepills/happypills and other toxics such as Lyrica and Cymbalta and b) such as me, getting only small help from strong opioids – docs not ready to prescribe even LDN or medical cannabis (which are the only meds not ever tried). I was diagnoset 15 years ago, have been eating dozens of pills and getting all those (sometimes pretty weird) treatments.
    And now I’m really sick and tired to read this about a person self suffering from fibro! Have you ever heard, there sure is different types of fibro which can be as an own line with different kind of meds and docs and treatment????????????????
    Sorry – my English is so poor… 😉

  10. Bob Schubring at 8:29 am

    Dr William Pridgen has evidence that Fibromyalgia results from an abnormal immune response to the Epstein-Barre virus, that enables the virus to remain in the body, and has devised a treatment to get the virus better-contained by the Patient’s immune system. This squares wonderfully with Dr Liptan’s observations about the value of massage and of restorative sleep. Muscle repair proceeds best, when the muscles are immobile, which occurs at the deep levels of sleep.

    The value of massage in these patients also makes sense, under the viral hypothesis. It’s by working the muscles, that lymph is squeezed from the muscles into lymph nodes. Viruses inhabiting the muscles, if they aren’t flushed away in the lymph to the lymph nodes, aren’t killed by the immune system in those lymph nodes. Thus, a virus that keeps the patient in just enough pain and misery to prevent sleep, soon gets the patient too sore and tired to move much. Which leaves the virus snugly in the muscles, where it can continue to multiply.

    Thus, causing chronic neuromuscular pain, is an optimal survival strategy for a virus. The virus uses pain and fatigue, to stop the patient from moving, because muscle movement is needed, if the immune system is to get access to the virus and kill it.

  11. Dave at 6:40 am

    I don’t know what Ms Liptan is referring to about “huge progress” in firbormyalgia. I say she is wrong. The prevalence of fibromyalgia is not being lowered. To too many doctors fibromyalgia is a contested condition, too many doctors stigmatize and criticize people with fibromyalgia, and there isn’t evidence that more people with fibromyalgia being returned to work or are happier with their care. In addition, now medicine claims fibromyalgia is a disorder of brain processing- despite a recent article here about treating fibro based on inflammation and a germ. If anything controversies in fibromyalgia have proliferated in the past decade- with more blind men looking at the elephant and not talking to each other to reach agreement about what fibromyalgia is and how it should be treated.
    Medicine always tries to pain a pretty picture about their efforts- but the truth about fibro and other painful conditions is quite a different picture then medicine tries to get the public to believe.

  12. Jean Price at 5:53 am

    Sounds like an informative, compassionate, knowledgable physician to help those with this life limiting disease. Hopefully her own health issues with it will allow her to continue to contribute to this field of study and of patient care. I only wish there had been a question about the use of opioids to get her opinion.