How to Come to Terms With a Fibromyalgia Diagnosis

For some people, a medical diagnosis can come as a relief — a name for the pain or an explanation for relentless fatigue. But if that diagnosis is fibromyalgia, you may be feeling more confused than reassured.

Naomi Davis (they/them) learned they had fibromyalgia in 2023, but expected the diagnosis to be more impactful. “I was looking for a name of something to communicate to people why some days I wasn’t able to get out of bed,” says Davis. But, they add, “I’m still wrestling with how to make sense of it all and how to feel better.”

Part of the problem is that there’s no single test to diagnose fibromyalgia, so you can't point to a finding on an X-ray, for example, to confirm you have the condition. “The diagnosis is based on what somebody tells you they’re feeling rather than something you can observe on an exam or find in labs or imaging,” says Ryan Anderson, MD, a rheumatologist at Duke Health in Durham, North Carolina.

That doesn’t mean the condition isn’t real, though — or that it can’t be managed and treated.

By the time you receive a fibromyalgia diagnosis, you’ve likely run through a gauntlet of medical testing, some of which only led to dead ends. And once you learn about the condition, it can be even more daunting.

“I thought, ‘Is this something I’m going to have to deal with my whole life?’” says Davis. “That’s incredibly scary. I want so badly to never experience a flare again.”

Something about having a diagnosis — as much as I wanted it — is also really overwhelming.

— Naomi Davis, diagnosed with fibromyalgia in 2023

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Fear of the future is a particularly common concern among people with the condition, says Lynne Matallana (she/her), who was diagnosed with fibromyalgia in 1995 and is the founder of the National Fibromyalgia Association. “It’s the problem of not knowing how you’re going to feel each day and feeling like you don’t have control.”

Let’s say you’re going to meet a friend for lunch, for example, but you wake up in the morning with a migraine or other pain. “You have to disappoint that friend, and you have to disappoint yourself because you have to say no,” she says.

Even if the diagnosis itself doesn’t bring relief, there are ways to feel better after receiving some clarity about your symptoms — including finding the right care team, treatment plan, and self-care strategies.

You are more than your diagnosis, but knowing more about what’s going on in your body can help you manage your symptoms, and ultimately, improve your quality of life.

“Reading more about the diagnosis has helped me, in some ways, put words to things I’ve experienced and felt for most of my life,” says Davis. “It’s helped me be able to better communicate about it, even if it’s still something that’s not widely understood or known.”

I want people to know it doesn’t mean that your life is going to get worse, and it doesn’t have to consume you.

— Lynne Matallana, diagnosed with fibromyalgia in 1995

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Here are a few other strategies that have helped Davis and Matallana adjust to living with fibromyalgia.

• Know there are better days ahead. It may seem impossible when you’re first diagnosed, but there will be days, weeks, or even months when you’ll be able to carry out your daily tasks and resume the activities you love. And you should, to the best of your ability. “Try to live your life the best you can,” says Davis. “Oftentimes, pleasant activities really help.”
• Set small goals ... Make breakfast for yourself. Go for a walk. “As you do [little] things, it can lead to bigger things,” says Matallana. “Each one of those can be a purpose for you and something to celebrate.”
• But be realistic. Don’t push yourself to run three miles at a time if you can’t, says Matallana. And don’t blame yourself if you can’t even go a few blocks on flare days.
• Find a purpose. “When you do something that you really enjoy — or feel is helping other people — that can help you to stop thinking about yourself and your pain,” says Matallana. Shifting your focus to someone else in your life and how you may show up for them today, in whatever way is possible for you, can break a negative thought spiral.

Managing fibromyalgia can also be frustrating for doctors, notes Dr. Anderson. Treating fibromyalgia “is like trying to solve a 1,000-piece puzzle with only a handful of pieces,” he says. “There's just not enough information about fibromyalgia available at this time.”

Here’s what experts know so far.

• Medications can ease symptoms. Prescription and nonprescription pain relievers, for example, can help with muscle soreness. Talk to your doctor about which medications can help with other challenging symptoms of fibromyalgia like migraine and sleep disturbances.

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• Lifestyle therapies can help, too. Regular gentle exercise, such as walking or yoga, acupuncture, mindfulness, and other lifestyle interventions and complementary therapies can make symptoms more manageable.

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• Separate your self-worth from your condition. If a medication doesn’t work, or acupuncture doesn’t help, that’s not because you failed, says Anderson. “People shouldn’t blame themselves or think there’s something wrong with them,” he says. Fibromyalgia is a complex condition that often requires trial and error to find a treatment plan that works for you.