Q&A With Dr. Ginevra Liptan About Treating and Living With Fibromyalgia
Although an estimated three to six percent of people worldwide live with fibromyalgia, the condition itself was not formally recognized until very recently (the FM diagnostic criteria were first established in 1990), so many people – medical professionals and researchers included – are still not very familiar with it. Therefore, those with fibromyalgia may have difficulty finding new and accurate information about their condition, or even a doctor or clinic who can properly diagnose and treat them.
That’s why we wanted to talk with Dr. Ginevra Liptan: a contributor and member of our Mighty community who is not only a doctor and the medical director of a integrative clinic for patients with fibromyalgia – but who also lives with the condition herself. As both a patient and a practitioner, Dr. Liptan has a unique perspective on fibromyalgia, so we’ve asked her to share some of her insights and advice to help our community stay informed, navigate doctor appointments and better manage their condition.
Here’s what Dr. Liptan shared with us:
1. The Mighty: How do you balance the demands of life and day-to-day responsibilities with managing your health? What advice would you give to others who may struggle with this?
Dr. Liptan: Living with an illness like fibromyalgia creates a whole new set of demands that must be balanced against all the other demands of life. While this balance is something that challenges everyone with fibromyalgia, all of our individual circumstances and struggles are different. And what works well for one person may not help another.
So my first advice is to determine what your body likes best as far as food, movement, sleep and quieting the stress response in the body. Becoming an expert in self-care can take lots of patience and experimentation! I often use the analogy of the fibromyalgia body as an orchid. These flowers require very specific temperatures, humidity, sunlight and watering schedules. One can become an orchid expert but it takes time and study and practice. With fibromyalgia we have to learn a whole new set of rules to care and feed for our “orchid” selves.
Even once you have become an expert on your own self-care, life has a way of throwing us off our game. A common pattern for me is that if I miss a few hours of sleep due to nighttime parenting demands, the next afternoon I eat some sugar to make it through the afternoon, and then it’s hello fibro flare! What I used to do in those scenarios is to beat myself up emotionally for having fallen down on self-care, and then comfort myself with some ice cream, which only made me feel worse and extended the period of time before I could stagger back to the wagon. With years of practice I am now more compassionate with myself when this inevitably happens and can get back on track more quickly. So my second piece of advice is to practice the art of self-compassion.
2. What are the most important questions fibromyalgia patients should be asking their doctors?
The most important question to ask is, “What is your treatment approach to fibromyalgia?” How they answer that will make it clear to you whether they take fibromyalgia seriously, and if their approach is aligned with yours.
3. With pain being so unique and subjective, it can be difficult for doctors to understand exactly what a patient is experiencing. We have the standard pain chart, but even with that, one person’s “3” may be another person’s “8.” In your experience, what are some of the most effective ways for patients to communicate pain (or other subjective symptoms) to their doctors?
This is absolutely one of the biggest problems facing all people dealing with chronic pain. A recent New Yorker article said it well: “The self-reported nature of pain scores leads, inevitably, to their accuracy being challenged.” In the 1985 book “The Body in Pain,” Elaine Scarry writes: “To have great pain is to have certainty. To hear that another person has pain is to have doubt.”
The subjective nature of pain is why fibromyalgia was not truly accepted as a real illness until the first brain imaging studies in 2002 allowed scientists to “see” fibromyalgia pain. Now there is a movement in law and medicine to use brain imaging to try to verify or quantify pain, but that may never actually come to pass and if it did would bring its own sets of challenges and questions.
So in the meantime, my recommendation to patients is to remember that doctors are ultimately scientists and respond best to data presented in as organized and rational a method as possible. One technique that can be useful is every day for a month, record in a calendar or journal pain levels on a scale of 0–10, along with jotting down notes explaining what that felt like for you, and what activities you were able to do or not do based on pain levels. This can make it much easier to communicate your pain experience to your doctor. A sample day’s entry could be: “Overall pain 8/10, migraine and body aches. Laid in bed with lights off all day.” After recording the data for a month it will be much more clear to your doctor – and you – what a pain level of 8 means for you.
4. What are some of the biggest mistakes fibromyalgia patients make with their treatment/health?
It is a really common mistake to stop medications suddenly without tapering down the dosage. Let me give you an example from my clinic last week. My patient had been on Cymbalta for a few months, but she started to feel it was not giving much benefit and might be causing her to gain weight. So she decided to just stop it, but did not lower her dosage down gradually or contact me for advice. She spent a miserable few days feeling the “brain zaps” and mood swings common to withdrawing from that medication, which she could have avoided by tapering her dosage down over one to two weeks. Of course if a medication is not helping or is causing a side effects, it makes sense to come off it. But talk with your health care professional about how to come off the medication safely and minimize withdrawal symptoms.
5. You’ve mentioned that you believe sexism is alive and well in medicine, and is the reason we don’t have a cure for fibromyalgia. Do you have any tips for patients who experience sexism or are discriminated against by medical professionals?
Unfortunately, both sexism and racism impact patients dealing with pain. That same New Yorker article that I referred to previously also describes two recent research studies that back this up. The first study noted that black patients are significantly less likely than white patients to be prescribed medications for the same level of reported pain, and they tend to be given smaller doses. The other study from University of Pennsylvania reported that women are up to 25 percent less likely than men to be given opioids for pain.
The best advice I can give is to make sure you bring a family member or friend when seeking medical care to act as a support and to help you advocate for yourself, which can be really hard to do when you are in a massive flare.
6. Are there any new developments in fibromyalgia research or treatment you are excited about?
CBD (cannabidiol) is very exciting as a potential treatment for fibromyalgia. This non-psychoactive component of cannabis has been shown in animal studies to calm the fight-or-flight nervous system, lower anxiety, ease pain and lessen inflammation. No human studies have been done yet, but anecdotally many of my patients are finding it helpful. Hopefully laws will change soon to make this, and other cannabis-based treatments, easier to study.
Ginevra Liptan, M.D., is a graduate of Tufts University School of Medicine, and board-certified in internal medicine, and developed fibromyalgia during medical school. She is the medical director of The Frida Center for Fibromyalgia and is the author of The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor.
Lead photo: Dr. Ginevra Liptan in her clinic, The Frida Center for Fibromyalgia