Fibromyalgia Health Coaches and Educators Could Fill Vital Gap in Care

By Ginevra Liptan, MD

I remember the first patient I diagnosed with diabetes. As I launched into my eager young doctor two-minute spiel about the importance of exercise and diet changes to manage diabetes, the patient stared back at me stunned, like a deer caught in headlights. I quickly realized she needed a lot more education on this subject than I had the time or expertise to offer. And since changing behaviors is really hard, she would also need advice, moral support, and encouragement.

Thankfully, for the newly diagnosed diabetic there are nurse educators who do exactly that. I referred my patient to one, and when she returned for a follow-up appointment, she was confident and already making positive changes in her life. I was blown away by the difference that a few hours of education and coaching could make.

Fibromyalgia desperately needs a similar model, where a person newly diagnosed would be automatically referred to a fibromyalgia health educator. According to The American Pain Society guidelines, “patient education is critical to optimal management of fibromyalgia.” Currently, however, fibromyalgia education is left to the individual provider who has scant time and sometimes little knowledge about what to teach or how to teach it effectively. Nearly half of all primary care doctors reported uncertainty diagnosing, treating, and managing patients with FM.

This is where a fibromyalgia health coach could fill a critical gap in the health care system, teaching clients how to exercise the right way, make dietary changes that can reduce pain, and best track symptoms to monitor treatment effectiveness. These are things that, when you are bogged down by fog, pain, and fatigue, are challenging to figure out on your own!

And let's face it, since many doctors don't know how to manage fibromyalgia well, patients often have to advocate strongly for themselves. Fibromyalgia health coaches/educators could give up-to-date information on current research and treatment options and help their clients navigate effectively through a confusing health care landscape and prepare for doctor appointments. This is especially vital for patients living in places where they just don’t have adequate medical resources or specialists. These educators wouldn’t even necessarily need to be nurses or health care professionals, they could simply be fibromyalgia patients or generally trained health coaches who have undergone specialized training.

Locally, my patients are fortunate to have access to just such a person, Tami Stackelhouse, who is an experienced and gifted fibromyalgia health coach. I have seen that patients working with her make progress on taming fibromyalgia symptoms much faster. Because I can give the medical advice like suggesting someone avoid gluten, or eat more protein, or perform gentle exercise. But the hard part for all of us lies in actually executing those changes, and that’s where I think having a coach helps. Coaches also can provide some help to get the joy back in life. Shifting your mindset even a little bit can result in a huge transformation.

But there is only one Tami, so I was ecstatic to learn that she has founded the International Fibromyalgia Coaching Institute to train others to be fibromyalgia health coaches and educators. Training includes education on current fibromyalgia science, medications, and treatment plans, and complementary and integrative therapies, along with:

       Pacing and energy management

       Fibromyalgia-specific nutrition and exercise plans

       Gentle goal-setting and action planning

       Stress management strategies

       How to add more joy to your life

       Self-care and coping techniques

       Building a fibromyalgia Flare Survival Kit

I asked Tami to explain more about the need for a health coaches specifically trained in fibromyalgia, as opposed to generally trained health coaches:

“The advice traditionally trained health coaches give makes sense for your average person who doesn’t have fibromyalgia—and it’s given with good intentions. But for those patients who have fibromyalgia, the information these coaches give can be overwhelming, feel impossible to implement, and can even do harm. Let me give you an example. Many health coaches might give advice such as avoiding prepackaged foods. But when you are extra fatigued, eating clean, organic food that requires a lot of shopping and preparation is a real challenge. Sometimes you have to find a middle ground between what is “ideal” and what is possible. Only a fibromyalgia-trained health coach has the expertise to help in that way.”

Successful management of any chronic illness requires a large component of education on self-management skills. In an ideal world, every fibromyalgia patient’s health care team would include a health coach/educator along with a medical professional. Ideally these health coaches act as patient advocates, who can guide and teach other patients in self-care, what to ask their doctors, and to offer emotional support.

I hope one day it will be as common for doctors to refer to a fibromyalgia health coach/educator as it is to refer to a diabetes nurse educator. The first class of newly trained health coaches graduated from the International Fibromyalgia Coaching Institute in January 2016, and her next class graduates in Spring 2016. Last I heard there were still a few spots left for Spring, so if you are interested go to their website to learn more about the program.