She Had No Idea She Had Fibromyalgia—Here’s How She Finally Got Diagnosed

Julianne Davis felt achy and too tired to move—and as weeks turned into months, the feeling didn't go away. Her doctors said she was fine and would get over it in time. She didn't. Here's the story of how Julianne got the answers she needed to live her best life, despite a brutal diagnosis

FibromyalgiaCourtesy Julianne Davis

A few years ago, Julianne went through in vitro fertilization, a two-part medical procedure requiring rigorous, daily testing, which typically extracts a high, emotional toll. “My body came out of it feeling tired. At first, I thought it was just the IVF, and the underactive thyroid, my doctors discovered during treatment,” she says. As the months went on, her symptoms didn’t improve. Julianne went to see a rheumatologist, who ran no tests, and said she was fine. “By now, I had brain fog and pain, as well as fatigue. I did research on my own and found out about fibromyalgia by googling my symptoms.”

Julianne’s online research led her to information about a blood test that may be able to provide a diagnosis to anyone who thinks they might have fibromyalgia. While there’s no approved test for fibromyalgia, companies have been working on developing a screen for this difficult-to-diagnose condition. Research published in 2019 in the Journal of Biological Chemistry suggests that a test called FM/a may provide a solution for people with fibromyalgia.

The company behind the test, EpiGenetics, has been making the test available to patients for a few years. “I called EpicGenetics and made arrangements to take the FM/a test. It took about two weeks for the results. When I called them to find out what’s what, they were just about to call me. My readings were so high that they provided strong confirmation of the diagnosis, and I just about fell out of my chair with relief that it wasn’t all in my head. ‘Gosh, you must be in a lot of pain, given your results,’ said the woman on the phone. ‘How long have you known you had fibromyalgia?’ About two minutes! I told her.” Armed with answers, Julianne started down a new, unfamiliar path.

A confusing diagnosis, affecting millions

Fibromyalgia is a disorder earmarked by widespread, musculoskeletal pain, headaches, and problems with insomnia and memory, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. The onset of symptoms often follows physical or emotional trauma, but may also occur gradually over time, without a specific, obvious trigger. Fibromyalgia is more common in women than it is in men. Its exact cause is unknown, but genetics, anecdotally, appear to be a factor. The chronic disorder is impacted upon by the way the brain processes pain signals, making them more pronounced and severe. This is known as abnormal pain perception processing, and translates into intense, almost-daily pain, for those who have it.

Julianne is not alone in her diagnosis, or in her quest for answers. Around four million Americans, a full 2 percent of the population, have fibromyalgia. “Historically, people with fibromyalgia spent years and thousands of dollars to arrive at a fibromyalgia diagnosis: a diagnosis that was not definitive, and was only arrived at by excluding other possible conditions,” said Bruce Gillis, MD, CEO of EpicGenetics, a privately-held biomedical company. When Julianne made that first phone call, she was able to find some relief by simply getting confirmation that her symptoms were not all in her head.

A trial study brings hope

Fibromyalgia can be debilitating. Too often, so is the medical community’s response to patients suffering from its symptoms. The FM/a test is an FDA-compliant blood test, which detects fibromyalgia through the identification of white blood cell abnormalities known to exist in people with the disorder. Since it became available in 2012, says Dr. Gillis, thousands of people have taken it. “The test gives patients certainty about a medical condition that has often been misunderstood, and erroneously denied, as a legitimate medical disorder,” he says. (These are some of the conditions that people mistake for fibromyalgia.)

Patients who test positive are given the opportunity to participate in a trial study geared towards studying vaccine treatment for the disorder. Work on the fibromyalgia vaccine is currently being pursued at the Immunobiology Laboratory at the Massachusetts General Hospital, by a team led by Denise Faustman, MD, PhD. The work is funded in part by a research gift from Dr. Gillis.

Dr. Faustman’s work is centered upon the 100-year old BCG vaccine, currently used to prevent tuberculosis outside of the US. Global data indicates that this particular vaccine may have life-altering applications for individuals diagnosed with fibromyalgia. Unlike the popular concept of vaccines, the BCG vaccine would not be used as a preventive measure. Instead, the inexpensive shot would be used as a means of correcting abnormalities in the immune system of individuals already diagnosed with the disorder.

“I believe we are at the forefront of advancing scientific information about fibromyalgia and answering these critical questions for patients: 1) Do I have fibromyalgia? 2) How and why did I develop fibromyalgia? and 3) Is there a direct treatment for fibromyalgia?” Gillis explained.

A look toward the future

For Julianne, the vaccine represents hope. “Finding out I have this disease motivated me to focus on it completely. I must have gone to four rheumatologists who didn’t know anything at all about the FM/a test, or the potential for a vaccine. All I heard, over and over again, was, ‘We don’t know what’s wrong with you.’ Now, I know what I have, and I also know that there is hope for the future.”

Julianne calls herself a work in progress. She combats fibromyalgia by walking 30 minutes every day and making sure she gets enough sleep. She avoids gluten because of its link to inflammation and also takes supplements, such as magnesium and ginger root. She also takes a multivitamin daily. “I’m getting closer, but there’s probably never going to be that magic tablet that takes away all of my symptoms,” she says. If you suffer from fibromyalgia, check out these 10 natural ways to treat the disease.

And as for her baby dreams? She’s decided to put them on hold. “I have my hands full with regular life right now. My whole focus is on my own health, and I’m working hard to treat it,” she said. “I really want to figure out what’s going on with myself, and best heal myself before I go down that road again.”

Clinical testing of the BCG vaccine has begun in fibromyalgia patients. Hopefully, that can pave a pathway to fulfilling Julianne’s dreams for a family—and for a pain-free life.

Sources

Corey Whelan is a freelance writer with strong, core competency in health and wellness. Based in Brooklyn, New York, Whelan writes about mom-centric anything, pets, lifestyle and medical issues. She has written a wide range of fact sheets, articles and handbooks and creates and produces videos and webinars for non-profit organization, Path2Parenthood, where she serves as Program Director. She is a current contributor to CBS News, WebPsychology and Care.com. An adept, thorough researcher, Whelan is well-trained in SEO optimization and key word use. She uses her craft to further her own love of learning and spends her very few hours of free time on cooking, pilates and DIY crafting. She shares her life with two, all-grown-up children and two astonishingly kooky rescue dogs.