Fibromyalgia Symptoms: How Do I Get My Doctor to Believe Me?

Lynne Matallana (she/her) still remembers the day she walked out of her doctor’s office. She had been experiencing bouts of pain and fatigue, and was seeking help for her symptoms. Her provider, though, was convinced they were all in her head.

When the doctor left the room, Matallana peeked at her chart — only to read, “major depression” and “imagining pain.” She asked the doctor to change it, and when he refused, she got up and left the room.

Though it was hard, Matallana doesn’t regret her decision. That moment was the first step in what felt like an endless journey — one that involved seeing a total of 37 doctors before she received a fibromyalgia diagnosis. She later went on to found the National Fibromyalgia Association, where she would help others feel seen and heard in the ways she hadn’t been.

If I would go in and cry, the doctor would look at me like I didn’t have credibility ... And so if I ended up crying, I needed to say ‘I’m crying because I am so frustrated and I hurt so much and I need your help.’

— Lynne Matallana, diagnosed with fibromyalgia in 1995

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Experts still don’t know very much about fibromyalgia, including what the underlying cause is, says Ryan Anderson, MD, a rheumatologist at Duke Health, in Durham, North Carolina. Until then, the best doctors can do is prescribe medication that can help control the symptoms — not prevent the disease from flaring up.

“People want to fix the underlying problem [of their fibromyalgia], and that’s what doctors want as well,” says Dr. Anderson. “But all of the medications … are symptomatic management, which is really not ideal for either the physician or the patient.”

What can help, though, is a strong care team to help you manage the symptoms and feel validated and heard.

No one wants to be in a fibromyalgia flare — but if you could time it, chances are, you’d want your symptoms to flare up in front of your doctor. At least, that’s how Naomi Davis (they/them) feels. They learned they have fibromyalgia in 2023.

“I wish that I could show [my doctor] what happens to me,” says Davis. But, “My doctors’ appointments don’t always line up with when I’m in a flare.”

Constantly being told that I’m a mystery, and then being pointed to another doctor, feels like a never-ending cycle.

— Naomi Davis, diagnosed with fibromyalgia in 2023

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Matallana, for one, thinks the best thing you can do is find a doctor who will listen to you, whether or not you’re flaring, and even if they don’t have all the answers. “If you tell your healthcare provider that you're not demanding their help — but you need help — oftentimes they'll figure out a way. Even some words of advice can be enough,” says Matallana.

To ensure you’re clueing them in to the frequency and intensity of your symptoms, Matallana recommends having two or three go-to sentences that explain what you’re going through. That way, if emotions are running high or you’re dealing with fibro fog, you’ll still know what you want to say.

It’s your right as a patient to seek out the care you need. “Some doctors aren't the right fit,” Matallana says. “Or maybe they just have a stigma against people who are dealing with fibromyalgia.”

Anderson ensures his patients feel seen and heard by talking to them about symptoms that often go overlooked, like fatigue. “We have pain medications, but we don’t really have fatigue medications,” he says. “Doctors tend to focus on the things we can fix, but I think it’s worth talking about things we can’t fix — at least to acknowledge and validate it as a thing that is impacting the patient's quality of life.”

You may have an easier time finding a doctor who validates your experiences by doing some due diligence before making an appointment. Matallana recommends calling up the practice and asking how many fibromyalgia patients the doctor treats, and whether the doctor is interested in treating the condition. “You wouldn’t hire an architect or a babysitter without interviewing them,” she adds.

The National Fibromyalgia Association maintains a list of doctors who are well-versed in treating fibromyalgia. “It's so important to take that power back and feel like the doctor is someone that's helping you,” says Matallana. “There are doctors out there who will help.”