A Doctor Treating Fibromyalgia Who Also Has Fibromyalgia

A Doctor Treating Fibromyalgia Who Also Has Fibromyalgia

Ginevra Liptan, MD

Ginevra Liptan, MD

At the National Pain Report, we have been thinking for some time about increasing the amount of coverage on fibromyalgia – which affects depending on who you believe between 6 and 10 million Americans – most of them women. We hear from readers who a thirst for more information.

We had heard of Dr. Ginevra Liptan who founded The Frida Center for Fibromyalgia in Lake Oswego, Oregon (just outside of Portland). It is the first private practice in the U.S. dedicated exclusively to fibromyalgia.

What drew us to her was her book published in 2011 – Figuring Out Fibromyalgia.  And one other thing – she also has been diagnosed with fibromyalgia. She agreed to an interview which is so thoughtful we are dividing into two or three  sections.

National Pain Report: “You come about your interest in fibromyalgia from a personal experience – you suffer from it yourself. How has that formed your work? ”

Dr. Liptan: “I started experiencing muscle pain and profound fatigue in medical school. At age 26, I suddenly went from being a very healthy and active to barely functional, exhausted, and in pain all the time. I saw several well-regarded medical specialists and no one could figure out what was wrong with me or give me any guidance. Ultimately my diagnosis came from a chiropractor! I started to explore alternative therapies, and finally found a few that really helped. Wanted to figure out if those therapies I stumbled upon would help others. Pretty much decided then and there to devote my career to studying and treating fibromyalgia.

I felt completely failed by the very medicine I was getting trained to deliver. I took a year leave of absence from school but what drove me to push forward and finish my training was knowing that there were so many patients out there just like me, who desperately needed help from their doctors, but weren’t getting it. I want to educate other doctors about this mysterious disease. I feel a huge part of my role is to dispel the stigma that some doctors still feel about fibromyalgia. I can speak “doctor” and can show them that this illness can happen to anyone.

Having fibromyalgia myself helps me to better understand what my patients deal with, and has made me really open-minded to alternative and “woo-woo” therapies of all kinds. If it helps, and isn’t harmful, I will support it!

My med school and residency training was purely western medicine, but since then I have studied integrative therapies through the Institute of Functional Medicine. I have treated fibromyalgia as a primary care provider, a pain specialist, and in the rheumatology clinic at Oregon Health and Sciences University. But it is my personal experience that gives me the unique perspective of a physician studying this illness from the inside.

As I continued my medical training, I was able to better assess the thousands of studies and articles written about fibromyalgia. I began to put together why certain treatments had helped me so much, while others did nothing at all. Based on my own relief with myofascial release I was convinced that the fascia was the source of fibromyalgia pain, and my research has focused on it ever since. At Oregon Health and Sciences University I conducted a study that found myofascial release therapy was more helpful than standard massage for fibromyalgia symptoms. (Liptan 2013) I’ve also published articles on exercise and self-management strategies. (Jones 2012) (Liptan 2010) (Jones 2009).

National Pain Report: “Fibromyalgia is often misdiagnosed–what advice do you have for your fellow physicians about understanding the disease?”

Dr. Liptan: “What I tell other docs boils down to these 3 things:

1) Fibromyalgia is real. More than 6000 studies say so!

2) Fibromyalgia is common and can happen to anyone. (Yes, even doctors)

3) There is no “cure” but it is definitely treatable, although have to go further than 3 FDA approved meds to get maximum improvement.

Editor’s Note: Dr. Liptan is finishing another book on fibromyalgia: The FibroManual: A Complete Treatment Guide to Fibromyalgia for You . . . and Your Doctor by Dr. Liptan will be released by Random House May 2016, available for pre-order on Amazon now.)

Authored by: Ed Coghlan

There are 12 comments for this article
  1. Brian at 9:24 pm

    Forgive me, this is lengthy. In August when I wrote, my main concern was that men were included in the discussion. I didn’t mention that I, an active retired guy, had spent May through August laying on the bed all day thanks to pain and CFS. I agree with the comments of people who’ve lived this life. It’s sad but somehow supportive just reading your thoughts and experiences. I hope my mind-dump isn’t a colossal bore.

    Just getting a diagnosis of Fibro can be a ridiculous trial. There is no justification for this. When you have chronic pain from injuries, that can be a downside to dealing with Fibro because doctors act like everything else you have is related to the injuries. It’s almost the inverse from people with a Fibro diagnosis, where every issue after is written off “It’s just your Fibro, nothing we can do about that.” Either way, t’s like arguments in semantics are the only important issue, win the argument, baffle the patients with utter BS – You can’t get there from here!

    I have endured fifteen years of chronic pain from permanent back injuries. I have been on a steady narcotic pain regiment which I have never abused or increased for a long time. In fact a pain doc increased my meds dramatically 5 years back and I felt much better. I voluntarily went back to the old level because of side effects (anxiety) scared me. At the time, I could handle the extra pain. In the last five years I’ve developed CFS, some IBS, migraines and peripheral pain. And my back pain has increased as my pain doc has documented but my med level under control of my family doc is unchanged. And now winter’s on it’s way. It’s near freezing at night in Canada now.

    Occasionally I’ve also had internal spams so acute that the emergency doctors thought I was having severe kidney stone issues. Nonetheless, I’ve managed to remain quite active, living in a rural area, cutting firewood, maintaining a big vegetable garden, working on boats and motorcycles. But over last five years, between the Fibro like issues and my injury pain increasing, I’ve become more desperate for help.

    I have asked my family doctor and pain doctor many times “do you think I might be developing Fibro” and I was always told, “it’s referred pain from your injuries” or “it’s peripheral myalgia” because I’m now 63. Then one day about two years ago, the family doctor said “If you had Fibro you’d have migraines” to which I responded “I don’t know. I get nasty headaches fairly often but doesn’t everyone? But I don’t see auras or anything.” He gave me a prescription for Rizatriptan and said if I have migraines, that will kill it within an hour, but if it’s a headache from any other cause it just won’t work. It worked perfectly. So, later I asked again “Do you think I’ve got Fibro?” I figured either he’d suggest some other affliction I’d also have to demonstrate, or maybe I do have Fibro. His answer was no, the peripheral pain is just referred pain from my injuries. Sigh! OK, whatever, at least the headaches are less a problem.

    He was about to retire and we’d always gotten along so I waited about a year and pounced on his replacement (another middle aged experienced family doctor) in April this year. I immediately asked for a referral to a neuro who believes in Fibro, to give me an assessment. I didn’t get the referral. First I had to justify why I thought I had Fibro, by regurgitating all the stuff that I’d already experienced and the pain that narcotics don’t really ease much. So right then and there, the doc did the basic Fibro physical test himself and said “Yeah, we could put you on Cymbalta”. And the Cymbalta helped! So months later I asked “So, I do have Fibro?” I wish I had a recording of the vague, stumbling, non-committal, BS answer I got. That’s as polite as I can express a meaningless answer where clear communication was obviously well deserved.

    I feel like a kid practicing in front of the mirror, crafting questions for which only good answers will come. Why on Earth hasn’t a “professional” had the brains to put me on a Cymbalta trial long before now? I really don’t care if you call my condition Fibro or not. How much better would I have felt the past few years? How much better my days would have been, while I was still working, if only I’d known I had migraines and there’s a med that works? As if searing pain in my back wasn’t enough. Here’s a good one – How does one draw the line between “referred pain from injuries”, “peripheral myalgia (common to older folks)” and Fibro? Well? How about it? Don’t patients deserve answers they can understand?

    Anyway, you probably would agree that no matter how I got to this point, I’m “Winning” now, right? I’ve got narcotics for injury pain, Cymbalta for Fibro pain and Rizatriptan for migraines! Yahoo! Wait.. Not so fast. My pain med level has not increased except for the brief change in 2010, since about 2005. The pain doc has confirmed that my med level is too low. So, can I get just a few more pills per month? Ha! Despite all this, the new regular doc now figures if Cymbalta helps with the peripheral pain, then I don’t need “so much” pain killers anymore. But wait, I’ve been struggling to do more than lay on the bed all day because of my current pain levels. If I had just one more pain pill a day, I could do more, feel better emotionally about what I got done, get more exercise. It’s not like I have no motivation. And winter’s coming on so my pain is ramping up, not down. My new family doc has my entire history going back 15 years. My injuires haven’t disappeared! I feel like I’m stuck in a loop, “But, but-but!”

    As if I was guiding a blind person gently across a busy intersection, I very diplomatically point out that I still have permanent injuries that are not about to suddenly heal. Every doctor whose ever seen me my xrays or MRI says something like, “No wonder you hurt!” and “It’s amazing you can do the work that you do.” And I wonder “Why should I have to argue the abundantly obvious?” Well the reality is, I need not bother trying because the good doctor isn’t listening. He sums up his boredom, “Well we can always try (his plan).” After all, it’s not his pain.

    The goal with self-administered pain killers is to be reasonably comfortable, not to be pain free. I accept that. I am NOT reasonably comfortable for at least half of each day and often the same at night. I use a TENS, heating pad, ice packs, meditate, and I get exercise when I’m not stuck to the bed. And still, my new doc wants to cut my meds back. It’s like talking to a robot.

    Ginbug mentioned empathy. It’s never more apparent than when you switch from a good doctor to a guy going through the motions. “Do you even care at all about serving your patients?” “Are you even capable of providing a clear answer to a question about my body & my care?” I want to stand on a chair and yell “Don’t you care at all?”

    A.Hull commented about how our personal lives implode. Deborah also mentioned the desperation that gives way to real consideration of what is left in Life. Straight from my heart, I couldn’t agree more.

    We start out being hopeful, like “it’s a problem but I get by”, but Pain and it’s wicked little stepsisters (migraines, CFS, IBS, etc.) slowly monopolize our lives. We have less contact with friends, family and we give up on activities that we used to enjoy. Eventually, we are preoccupied, mentally and physically grappling with Pain every waking moment; we even dream about Pain at night. It’s amazing my wife hasn’t had a heart attack for the times at night that I’ve awaken screaming in pain from a monster back spasm striking like a knife. Finally instead of making a short list of what we can’t do anymore, it’s a short list of what’s left.

    As we proceed downhill, we need the medical community most. We need real motivaated professionals to rally to our support, not hide behind vague excuses for doing nothing. If they don’t know the answers, it would be far better to say “I don’t know but we can try this..” that to BS us into leaving the doctor’s office knowing only that they are no help. It’s no wonder people contemplate suicide and sadly some who go that route. We don’t want band-aids like anti-depressants, we want hope. We don’t want counseling on how to cope emotionally, as if we’re heading to hospice. We are in limbo and we want our lives back. And in practical terms, if the difference between being in limbo and having some quality of life is a modest addition to our medications, a trial of something that may help, who benefits when we are denied?

  2. Wendy at 2:14 pm

    Why are MD’s seemingly allowing every other entity, ie. the government and insurance companies dictate to them how they may treat their patients? I thought that the AMA was a pretty powerful group w/a lot of clout in regard to regulating their profession. However, it seems like they have “rolled over and played dead”, when it comes to their professional freedom to use the educations that they paid so dearly for. Why is it, that if my MD is closely regulating me, my behavior and response to the treatments they believe are beneficial for me, then I am not allowed to have them and the doctor is not allowed to use his learned judgment to order the requested and required meds to treat me? It seems that the “tail is wagging the dog”. What can we sufferers do? When I fight for my meds, that are working for me as best, or better than a any other prescription has– I am labeled as a “drug seeker” and uncooperative. This is so frustrating and definitely unfair. No other aspect of patient treatment is so closely regulated and scrutinized as pain management. If my blood sugars are not responding to the meds, or my B/P is still sky high– the doctor can prescribe until the cows come home and no body says a word. But, increase a pain med and it immediately gets the attention of the DEA and all involved must prove that it is medically necessary and the “last resort”, if even then, it will be approved? What can we do either as a group or individually to get the government out of our medical records and let the doctors do what they have been trained to do and are licensed to prescribe?

  3. Patricia at 9:23 pm

    I was diagnosed with FM in 1987 by a psychiatrist I visited because I wanted out of the pain and didn’t care if it was all in my head. He was a kind, gentle man who had FM! After hearing my story he sent me to his doc’s group where I was diagnosed. Within a year or two I tried Feldenkreis Physical Therapy which, over time, brought me from a robotic, stiff, severely painful walk to a release of much of my pain, and a relaxed demeanor. Over time I went into remission. I now have RA and IBS-D, so pain is part of my usual daily life. I’m working toward remission there, too.

  4. ginbug at 8:58 pm

    Brian is so right! Just because fibro. SEEMS to affect more women than men, it is NOT just a women’s disease! It was the same w/ heart attacks, even though men & women suffered them, men SEEMED to have them more than women which targeted research & education of warning signs towards men. We now know that was a big mistake that cost many lives due to women’s warning signs being COMPLETELY different than a mans & even though more men had heart attacks, women were much more likely to die from them because no one knew they were having one due to the different warning signs!

    We must NEVER allow that to happen again & while there are illnesses that will only affect a certain sex, (I will NEVER get prostate cancer & my husband will never get ovary cancer!) most illnesses are equal opportunists! Maybe the fact that men a far less likely to go to the doc than women, could be why it SEEMS that most fibro. patients are women!

    What ever the reason, the fact remains that men are being largely ignored not just by the “fibro world”; but also by the “breast cancer world” which men are needlessly dying from & that needs to change NOW!

  5. Helena at 5:41 am

    I have fibromyalgia the past 12yrs .I have modified shiatsu to suit Fibro clients needs and am receiving great results . I have designed a course and I am teaching my students .We have begin working very closely with a Fibro association.there clients have found having this treatment on
    A regular basics has really help them
    Much love Helena

  6. ginbug at 8:02 pm

    Deborah,
    I so understand what you are feeling as I too am tired. One of the biggest problems for us is the fact that we are all different in how our body reacts to illness & treatments. What works for one may not work for another & how much pain I can push thru may be more or less pain you can push through. It is very difficult to see someone that has the same thing you have or even have it more severe than you, that can exercise or do things that you are no longer able to do! Then you feel very judged by people that say, “well she has fibro. & she is still able to excise or work, or she does not take pain meds & not giving in to the pain!”
    We are all very limited to see & know what we experience in our own lives as that is our only point of reference & therefore is how we judge others.
    Most docs see us as a mechanic sees a car, they have learned how to find & repair our parts. However when they can not fix the car no matter what they try, they junk it or pawn it off to someone else. This is where we need to see more education, life experience, & especially EMPATHY from docs! To see us as more than just our “parts” & illnesses, to see us as an INDIVDUAL & UNIQUE fellow human that feel the same emotions they themselves feel! When docs (& everyone else, for that matter) learn to look & see beyond their own eyes, they will be better docs that are truly able to save lives!
    I think this doc has made a great start & hope that she can have a big impact on the medical community as things MUST change! So I wish her great success & would love her to expand & build a office here in east central fl.! Deb, please hang in there & feel free to check out my facebook page called criminally inpain

  7. Brian at 7:41 pm

    Please don’t write for women only. The Mayo Clinic says that the disparity between men and women having Fibro would be substantially narrowed if more men were properly diagnosed. As they say, most men get Fibro after years of chronic pain from permanent injuries, when the pain spreads to places where there’s no injury, throw in some CFS, flu/colds that drag for months, migraines. That’s me. The Mayo Clinic says, on average, those men who do get a Fibro diagnosis fight for five years to get it, after years of living with chronic pain. The rest fumble along being told “you’ve got referred pain (or peripheral myalgia), there’s nothing we can do”, while the CFS builds and wrecks our existence.
    Often I start reading a Fibro article and realize quickly it’s written as if the readers are only women. It’s got nothing to do with women’s issues. I’ve been married over 40 years and that sort of thing is important for women for sure. But all I wanted was to read something hopeful, at least inclusive in it’s language.
    One last thing, maybe women have “permanent injuries” as the Mayo Clinic talks about, that are not acknowledged, that may contribute to Fibro as it does in men. From seeing what my wife went through bringing two kids into the world, don’t tell me they’ve never had trauma.
    That’s my two-bits worth. Good luck to all sufferers!

  8. Betsy at 7:35 pm

    I am also a patient at Dr. Pelligrino’s practice! For me, one of the most frustrating things is that no one treats the underlying causes – the best anyone can do is throw chemical band-aids at it. I appreciate that they take my pain seriously, but I long for the day when we can do something to actually cure this awful illness.

  9. Renee Rivard, PharmD at 8:43 am

    Fibromyalgia is one way in many people that the body communicates its inability to keep itself restored with healthy, productive cells – which results from insufficient nutrients supplied by the diet.
    Many people with fibromyalgia may find symptom, and sometimes even disease relief, by changing their diet such as trying a 4-6 week experiment of eliminating all foods that are less nutritious and/or that can increase cellular inflammation. Try the following for 4-6 weeks and see if it helps, if so then you can continue this style of eating: Eliminate all grains, dairy, legumes (beans, peas, lentils, peanuts) and added sugar (sugar, honey, stevia, syrups, etc) and for EVERY meal (even breakfast) eat only vegetables, lean protein (chicken, turkey, seafood, fish), and healthy fats (1-2 teaspoons olive oil, coconut oil, 1/2 avocado, a few walnuts) PLUS each day eat a handful of fruit. Be diligent with this for at least one month. Find a good support system, like a buddy or family members to help you with this challenge.
    These foods impact your genes by “turning off” disease-causing and inflammation-causing genes to help prevent disease and allow your body to return itself to a healthy state.
    To your health & happy genes!
    Renee

  10. Patty hathorne at 10:17 pm

    Do you think this is Fibro is related to tmj in anyway? I had jaw surgery 18 years ago and it went bad. That’s when all this started for me.

  11. A. Hull at 8:54 pm

    I have had fibromyalgia and was dx 11 years ago by Dr. Pelligrino. Was working a full time job that I loved, taking care of my parents, raising a family, Pain started out noticeable, but has gradually gotten much worse through the years. Cannot work any more due to fibrofog, nor concentration, and the immense pain I am in. I have go to a wonderful pain clinic, who has placed me on strong pain meds but cannot do anymore for me. I cry every day wanting it to end. I have a wonderful family that would kill them. Please, if you can help me, I would be truly thankful I am 60 years old,

  12. Deborah at 1:32 pm

    The article was interesting but it didn’t give us any answers. i need answers. i can’t even find a doctor that will try to do anything for me other than give me some neurotin. They tell me to exercise. I tried some water physical therapy. They had me doing a 1/2 hour program. It put me in bed for 2 to 3 days after. After 3 weeks they did a re assement and told me i shouldn’t continue.
    There is also a doctor in Ohio that has fibromyalgia and has written several books. His name is Dr. Mark Pelligrenio. He practices in North Canton, Ohio. I saw him early in my diagnoses and since i was doing everything possible that they knew of the time he told me he couldn’t do anything more for me.
    I have been so proactive in trying to help myself and i feel so lost. I feel that doctors don’t even want me as a patient anymore.
    I was on narcotics for 16 years and they truly helped. At least I didn’t think about suicide all the time because I can’t stand the pain. I haven’t had narcotics for over 2 years now and I really don’t want to go back on them but I also don’t want to think about suicide all the time either. I’m so tired of life and I tired of the pain.
    I know you won’t publish this because it isn’t a success story. I’m not whining I’m talking about the state of the medical community that doesn’t even want to try to help those with fibromyalgia. If you can’t take the 3 FDA approved drugs and you can’t exercise then no one wants to even deal with it.
    I do hope you continue to publish more about fibromyalgia.
    Thank You.
    Deb