What Fibromyalgia Patients Are Telling the Doctor

What Fibromyalgia Patients Are Telling the Doctor

By Ed Coghlan.

(Recently, noted fibromyalgia expert Dr. Ginevra Liptan appeared in an online interview with our friends at www.livesupportgroup.com. It reminded us we hadn’t chatted with her for a while and prompted us to do a short interview with Dr. Liptan, who has a practice devoted to the treatment of fibromyalgia outside of Portland, Oregon)

Dr. Liptan, you recently shared some insights in an appearance in an online support group. What were you hearing from them?

Ginevra Liptan, MD

They asked great questions, as always! Some themes included challenges with access to medications that were helpful for symptom management, for example lack of access to pain medications due to health care providers being unwilling to prescribe opiate based pain medications, which is an issue nationwide that many chronic pain patients are facing as political and medical opinion pendulum has now swung away from using that type of medications. I turned the tables and asked them some questions as well, as I was curious what type of health care provider was primarily helping them with fibromyalgia, and as I suspected, for the most part it was their primary care providers, not pain management or rheumatologists.

You are an expert on fibromyalgia–your practice is devoted to it. For patients who don’t have access to you or other physicians who really understand fibromyalgia–what counsel do you have for them in dealing with their fibro?

My first advice is always to become as educated as possible on understanding their own illness, as the saying goes “ Knowledge is Power”. Next, using a resource like my book The FibroManual, learn and implement effective self-care strategies such as self-myofascial release, dietary changes to lower inflammation, and activating their own relaxation response. Finally, continue to seek out doctors that are, if not knowledgeable about fibromyalgia, at least willing to partner with them on figuring things out together.

Do you feel diagnosis of fibromyalgia is getting better?

Yes, health care providers are definitely getting better at diagnosing fibromyalgia, and thankfully this means it takes less time for patients to get the correct diagnosis. Now the big challenge is that while doctors are more familiar with the symptoms of fibromyalgia and how to diagnose it, they still don’t know how to treat it, beyond prescribing the 3 FDA-approved medications. And those medications, while helpful for treating pain, don’t address the often more debilitating symptoms of fatigue and fibro fog. That is why I included a health care provider guide in The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor.

Are their research studies either going on or recently completed that have caught your attention?

The online support group participants asked me the same question! Yes, in particular there was a recent study from Spain https://www.ncbi.nlm.nih.gov/m/pubmed/28139112/ that found that a regular program of self-myofascial release (gentle, sustained stretching that breaks up adhesions and tension in the fascia that surrounds the muscles) significantly reduced fibromyalgia pain and stiffness. I was really excited to see this study because myofascial release massage therapy has helped me the most with my own fibromyalgia pain and several studies have shown its benefit, including one I led at Oregon Health and Science University. But not everyone has access to a myofascial release therapist or can afford to get this treatment, as it is not often covered by insurance. So for a study to show that patients can get the same benefits by doing it on their own is really exciting! To learn more about how to give yourself myofascial release go to http://www.fridacenter.com/tools/

You’ve written two very successful books on fibro. Any plans for a next effort?

My focus these days is on developing courses and training programs to help educate other doctors and health care providers on treating fibromyalgia more knowledgeably and effectively. There is a whole world of more effective treatments out there that doctors don’t know about. As a doctor with fibromyalgia myself, I am passionate about sharing everything I know with other health care providers, so that more patients can benefit from effective treatments. I am also working on online courses directed towards patients so stay tuned at www.drliptan.com or on Facebook to be notified when classes are available.    j

(If you have questions for Dr. Liptan about fibromyalgia—and remember she is not only a physician but someone who has fibromyalgia–, send us an email (editor@nationalpainreport.com) and we will ask her to answer some in the future.

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Authored by: Ginevra Liptan, MD

There are 9 comments for this article
  1. Desiree Warrell at 10:21 am

    I have no words. Suffers are exactly that. People a killing themselves or trying hard not to. Massage doesn’t always work, nothing always works as you should rightfully know, in fact sometimes a massage can put you on a pain episode and land you in bed. This is a central nerve disorder and a lot of “experts” need to get up to speed on what’s going on. The nervous system heightens sensitivity not only in your muscles but in your gut as well. WE cannot tolerate most things that is why we also have IBS. Prescriptions aren’t tolerated or work. The one that does work for most is opioids it’s the facts. So please stop justifying labeling pill fibromyalgia patients as pill seeking junkies. Stop saying you suffer from fibromyalgia that takes a persons life away when clearly you have one. I’ve tried every pill, every herb, elixir, massage, hypnotherapy, yoga, mild exercise there is. I’m a business owner and used to work out everyday. I have spent 100’s of hours combing the internet for answers and even read your story. How you switch back from LDN to hydro’ so you don’t become dependent. We need doctors in our corner, not ones trying to make money off of our illness.

  2. Marian Rendall at 2:49 pm

    Hi I am trying to get in touch with someone that is investigating the cause of fibromyaliga, I have recently observed many people who have this condition also has had or going through gall bladder trouble, I wonder if fibromyaliga stems or is rooted from something caused by the gut or the gallbladder?
    Many thanks
    Marian Rendall

  3. Colleen Steckel at 7:40 am

    Some who are diagnosed with Fibromyalgia may also fit the experts’ criteria for myalgic encephalomyelitis (ME). Patients with ME have a broken oxygen exchange system and an impaired ability to produce energy. The hallmark symptom of ME is activity outside of their ability to generate energy causes a worsening of symptoms.

    If fibromyalgia patients find themselves in a push/crash cycle with muscle fatigue, it is worth considering an ME diagnosis.

    For more information about this criteria, check out the questionnaire at: http://www.meadvocacy.org/the_international_consensus_criteria_what_is_it_do_i_fit_the_criteria

  4. Jean Price at 10:02 am

    I couldn’t help but wonder what the doctor’s own stance is on using opioid pain medication for treating patients who have this illness.. With fibromyalgia, like for most diseases and condition which are painful, pain medication alone surely isn’t the ONLY answer…yet it CAN be helpful…EVEN NECESSAFRY…. to achieve a more functional and more comfortable life. And isn’t this really the basic goal of all treatments?!

  5. Susan D. at 1:27 pm

    The peer to peer sharing group meetings at Live Support Group.com are always very interesting. People can “join us” at http://www.livesupportgroup.com. We always enjoy Dr Liptan as a guest speaker, as we did on May 8th. We greatly appreciate the information that she shares with us. Thank you NPR for interviewing her concerning this meeting. Your article was very informative.

  6. Mona Twocats-Romero at 12:33 pm

    The self-administered myofascial pain relief video course that dr. recommends costs $297. I don’t know about many folks with fibromyalgia, but my SSDI does not allow for me to pay this much for ANYTHING. I even have to wear only my podiatrist prescribed shoes and insoles, because my Kaiser plan picks up the cost. That means I have one pair of shoes to wear every day for two years. I cannot afford this course, so why isn’t it available at no cost to those who have low incomes. I was very discouraged and quite peeved when I realized this was not a free self-help course.

  7. Ibin Aiken at 10:44 am

    I attempted to contact the American Medical Association for mistreatment of chronic pain patients and injured patients “after the fact and treatment”. I was directed to contact the “joint commission” department. Anyone interested in more than discussion contact – http://www.jcrinc.com. Voice the abuse of RESPONSIBLE chronic pain patients.

  8. StevefromMA at 9:31 am

    I very much respect Dr. Liptan. I wish that MFM worked for everyone, did not for me, nor did various meds help. I hope she continues her education efforts and availability to the FM community.

  9. Ibin Aiken at 9:06 am

    My wife of now 39 years was very vibrant, active, held a job, and we raised two children. We worked together for the “training” and education of our children to prepare them to enter the work society. When my wife reached 50 years of age, she began coming home from work, very tired. She did not have the energy to remain active “on the weekends”. One of he personal characteristics that I admired about her was her tireless energy. She is still extremely sociai and “likes” other peoples company, and conversation. Never met a “stranger”.We went to several different doctors all prescribing different medication for all different diagnosis. Finally we found a physician well versed with fibromyalgia symptoms We were sure he had found the right diagnosis for correct for her health condition. We did not realize that her condition was very disabling even with the commonly prescribed medications for fibromyalgia. After 2 more years of working, she got to the point the point that she was in such full body pain, so fatigued, and was often experiencing a “fog” in her ability to function. I was still employed, she had paid her ‘social security” tax all her life. We applied for her s.s. disability when she was 52 years old. That took 3 years even WITH doctors recommendations. We have never wished to be dependent on anyone or anything! She is now 56 years old and suffers even worse. CDC has helped immensely with her symptoms….worsening. At 32 years old she was a champion bodybuilder, a devoted Mother, Wife, mentor, and loving person. She has NEVER smoked, never drank, never used ANY type illicit drug. Fibro affects are devastating and she was NOT prescribed any type “pain” medication until she literally became chronically depressed. We found a good physician, compassionate, skillful, and concerned about his patients individual care. I am at this time truly worried about her outlook of the future. I see her “giving in” and not attempting to fight her sickness.I wish that there was a better treatment for fibromyalgea NOW but, there is not. She is a concscientious care taker of herself and ME along i with our adult children. She, along with many others do not deserve to be labeled as she has been with the CDC “guideline”.

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