Diagnosing Fibromyalgia: A Long Journey for Some

An estimated 5 million adults in the United States have fibromyalgia, yet it’s an illness that isn’t well understood. Getting a definite diagnosis can be quite a journey, both time-consuming and frustrating for people who live with the constant pain and fatigue associated with the condition.

From the start of symptoms to diagnosis

“On average, it’s probably five to 10 years between when people first develop symptoms and when they’re finally diagnosed,” Daniel Clauw, M.D., a professor of anesthesiology, medicine (rheumatology), and psychiatry at the University of Michigan, explained. It’s hard sometimes to come up with an exact timeline, he said, because many who develop fibromyalgia start out by having pain in a couple of areas of their body and then it slowly spreads to more areas.

“It’s difficult to know when they stepped over that transition to a more widespread pain condition, such as fibromyalgia.”

Once patients consult with their physician, it generally takes about three to four months for a final diagnosis, Kevin Hackshaw, M.D., a rheumatologist at The Ohio State University Wexner Medical Center, said. But how long it takes also depends on how familiar the physicians are with fibromyalgia, he adds.

There is no specific test that can tell you that you have fibromyalgia. Historically, it was considered a “diagnosis by exclusion,” meaning that once all other possible causes have been ruled out, your physician would diagnose fibromyalgia. What makes it even tougher to diagnose is there are many conditions that have symptoms similar to fibromyalgia, Dr. Hackshaw said. “The primary common culprits that can mimic fibromyalgia include underactive thyroid (hypothyroid), low vitamin D levels, early stages of diabetes, early stages of autoimmune disorders, and on occasion, some inflammatory muscle conditions.”

Treatment should start when fibromyalgia is suspected

Experts are now saying that rather than waiting for a diagnosis, physicians should begin treatment once it’s suspected — with continued testing for other possible causes. “We’re trying to teach physicians and other health care providers that if they see someone who has widespread pain, fatigue, memory problems, and sleep disturbances, and they meet the criteria for fibromyalgia, to go ahead and diagnose and treat it,” Dr. Clauw said. Testing for other conditions can still continue.

Getting the diagnosis

Jennifer Durgin, a 38-year-old development writer in New Hampshire, was diagnosed with fibromyalgia in June 2016, a little over a year after she first experienced noticeable symptoms.

“The first sign was foot pain in the beginning of the summer, but I was training for a half marathon,” she said. “I thought I needed a break from running. But the foot pain continued all through the winter and then in the spring.”

Ms. Durgin then began to notice swelling in her hands and hip pain, and daily activities — like sitting, climbing stairs, doing housework —became difficult.

Her primary care physician couldn’t detect any swelling in her joints, nor did her blood tests show anything definitive. After trying different pain management techniques without relief, she was referred to a rheumatologist, who told her, “Well, you’re a textbook case of fibromyalgia.” Ms. Durgin was stunned.

From disbelief to relief

Reaction to the diagnosis can range from relief to denial. “Some patients refuse to accept a diagnosis of fibromyalgia,” Dr. Hackshaw said. Fibromyalgia can’t be seen by definitive test findings, so it can be hard to accept. “Some may seek out specialists, sometimes multiple specialists, who reiterate the same thing. I can’t count how many patients I’ve had who were not happy with the diagnosis because they wanted something more, they needed something more specific.”

Ms. Durgin hadn’t considered fibromyalgia as a possibility. Given her history of psoriasis, she had convinced herself that her problems were caused by psoriatic arthritis. The diagnosis also surprised her because she didn’t notice the fatigue often associated with fibromyalgia.

“I had a friend who was diagnosed with it and I didn’t feel that we had the same problems. She had extreme fatigue and difficulty sleeping,” she said. “I’m a great sleeper, and I wasn’t especially fatigued. But since the diagnosis, I’ve noticed if I’m having a flare up, I do get fatigued and that is so unlike me.”

Ms. Durgin was initially upset when she learned her diagnosis. Knowing that stress can trigger fibromyalgia, the diagnosis made her feel like she’d failed at managing the stress in her life. As mother of two special needs children, she knew that stress reduction was vital and had taken many positive steps to help herself, such as eating better, exercising more, and seeing a counselor.

“I had done all these things to try to prevent some sort of horrible health thing happen,” she said. “I thought I was doing such a good job handling my stress and now this was proof of my failure to handle it.”

Her rheumatologist was quick to point out that none of this was Ms. Durgin’s fault though. Stress is just one of many possible triggers.

And yet for others, the diagnosis is a relief. “Multiple studies have shown that there is an actual improvement in patients’ treatment and quality of life once they know what it is they have,” Dr. Hackshaw said. Many patients are worried that they have something more debilitating, like cancer, he said. “So a diagnosis is reassuring to many patients.”

If you are experiencing symptoms of fibromyalgia

People who believe they may have fibromyalgia symptoms should keep track of their symptoms every day, Ms. Durgin recommended. “If you have a chronological record, it will help you when the physician is asking you questions. You might feel overwhelmed,” she explains. “You’re not going to think of all the questions you have when you’re in the moment, especially if you get a new diagnosis.”

Patients do need to be their own advocate when it comes to invisible illnesses like fibromyalgia. Not all physicians are as familiar with fibromyalgia as others.

“If you think this is a problem you have, then keep pursuing it,” Dr. Clauw said. “If that means you have to go to a different doctor or doctors, then so be it.”

Marijke Vroomen Durning, RN
Meet Our Writer
Marijke Vroomen Durning, RN

Marijke Vroomen Durning, RN, is a health writer and nurse in Montreal, Canada. She has been published in many outlets in print and online. And she maintains an award-winning blog, medhealthwriter.blogspot.com. Marijke is also the author of Just the Right Dose: Your Smart Guide to Prescription Drugs & How to Take Them Safely. When not writing, Marijke (pronounced muh-RYE-keh) is usually hiding in her sewing room, creating yet another beautiful quilt. Follow Marijke on Twitter @MarijkeD.