5 Things No One Told You About Fibromyalgia

McKenna Princing Fact Checked
A woman touches her neck.
© Guille Faingold / Stocksy United

Fibromyalgia is one of those conditions still shrouded in a bit of mystery — sometimes even for the people who have it, which now number around 4 million, according to the Centers for Disease Control and Prevention (CDC).  

Getting a fibromyalgia diagnosis can be challenging because there is still so much doctors don’t know about the disease. But answers are slowly being uncovered — here are a few of them.  

Fibromyalgia is caused by a less-understood type of pain.  

The body’s pain system helps keep us alive. But sometimes that system doesn’t work the way it’s supposed to.  

“Our nervous system filters out sensory information all the time, but it’s harder to ignore pain because pain’s purpose is for us to notice it,” says Kaitlin Touza, a clinical psychologist who specializes in working with chronic pain patients at the Center for Pain Relief at UW Medical Center – Roosevelt.

Traditionally, there are two types of pain identified: nociceptive, caused by inflammation and tissue damage, and neuropathic pain from nerve damage. But with fibromyalgia, researchers have discovered a third type of pain, called nociplastic pain, where there is no clear injury or illness but the nervous system perceives high levels of pain. 

“Right now we think of fibromyalgia as on the spectrum of nociplastic pain conditions, where the primary thing behind the pain isn’t injury or damage, it’s more that the pain response has become dysfunctional and pain is magnified,” says Dr. Brett Stacey, division chief of Pain Medicine at UW Medicine and medical director at the Center for Pain Relief.

These three types of pain can occur separately or together (oh joy), so people with fibromyalgia can also experience pain from other conditions. 

Researchers still don’t understand nociplastic pain entirely, which is why conditions like fibromyalgia are still perplexing. But fibromyalgia pain being nociplastic makes sense since people with the condition often have other symptoms that aren’t typically seen with other types of pain, symptoms like fatigue, trouble sleeping, anxiety and depression, hypersensitivity to sensory input, irritable bowel syndrome, brain fog and migraines.

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It can be diagnosed using a pain scale. 

Fibromyalgia won’t show up in traditional lab tests or something like an x-ray, but it can be identified using fMRI, brain scans and pain threshold tests, Stacey says.  

The most common way to diagnose fibromyalgia is the Widespread Pain Index, a measure of pain sensitivity that is much more robust than the standard, “Score your pain from 0 to 10” scale you’re given during a hospital stay. 

“It measures how much pain interferes with your life, because what’s important is how pain impacts people’s lives, their ability to function, their relationships, activities and their movement,” says Dr. Elisabeth Powelson, an anesthesiologist and pain medicine specialist who works with Stacey.

Getting a diagnosis can be validating and overwhelming at the same time: validating because you finally have an answer and can start treatment, overwhelming because of all the unknowns surrounding the condition and the fact that there is no easy cure.  

If someone is uncomfortable receiving a diagnosis of fibromyalgia because of the stigma around it, Powelson encourages them to see the diagnosis simply as a means to an end — that is, a way to open up more treatment options that are evidence-based.  

Mindfulness can help manage fibromyalgia pain.   

It may seem flippant, like telling someone to “just calm down” when they’re having a panic attack, but research has shown that in-depth teaching of mindfulness strategies can help people manage their chronic pain, including fibromyalgia pain.  

The experience of pain consists of sensory, emotional, and cognitive aspects, which often are perceived as an unpleasant monolithic experience, says Dr. Irakli Soulakvelidze, an anesthesiology and pain medicine specialist who works in the clinic with Powelson and Stacey. He has taught mindfulness-based stress reduction (MBSR) in the clinic for the past seven years. MBSR is an evidence-based practice, typically structured as an eight-week course, that was developed in the 1970s by Jon Kabat-Zinn.

“By paying attention and exploring pain, mindfulness helps to tease out unpleasant emotions that are entangled with pain, as well as see how pain negatively affects ideas about the future, relationships, work and other important activities. It is easier to manage pain when the discrete nature of its experience is understood by a person experiencing pain,” he explains.  

Through mindfulness, people learn how to respond to pain in a way where there seem to be more choices, and with more self-compassion, rather than continuing to react to it with habitual, autopilot-based strategies that leave little room for skillful choices and usually are ineffective. 

Movement is important 

Research has shown that people with fibromyalgia have poorer surgical outcomes than people without it — so Dr. James Robinson, a physical medicine and rehabilitation specialist at the same clinic, likes to focus on non-invasive therapies. His favorite? Exercise. 

It may seem counterintuitive, telling someone with widespread pain that they need to move their body more. But the idea is to identify how pain is limiting someone and support them as they learn how to work with their body rather than against it. 

“You can’t just give people a set of things to do without knowing how it works for their body or just guess what will work for someone. You have to establish a baseline and then go from there,” he says.  

Exercise, which is deliberate stress on the body, can be challenging when pain is involved. Robison recommends starting with small amounts of exercise and gradually building up, because doing too much or starting off too intensely can cause a pain flare.  

He has found that movement can significantly help someone’s pain and perception of it, though.  

“To find they succeed in something they couldn’t do before is empowering,” he says. 

Retraining your nervous system can help. 

Reducing stress and how often your nervous system is getting activated is extremely important, as this helps adjust how the brain processes pain, helps preserve energy and helps with general stress management, says Touza.  

“When we do something that hurts, the nervous system learns from that. So even if you know vacuuming isn’t damaging, if it hurts when you do it, your nervous system will categorize it as dangerous and try to get you to stop doing that activity,” Touza explains. 

She works with patients using a time-based activity pacing tool customized for each patient’s pain levels and activity goals. Over time, using this tool and gradually building up activities can retrain the nervous system and help people do normal activities with less or no pain.  

Along with reducing stress, building up activity levels, and practicing mindfulness, there are other treatment options for fibromyalgia, including physical therapy and mental health therapy, plus FDA-approved medications just for fibromyalgia, as well as experimental treatments; Stacey says off-label, low-dose use of naltrexone has shown promise.  

Fibromyalgia is manageable, Powelson emphasizes, and it can even go into remission.  

“It’s about working on things that are meaningful to the patient and setting feasible goals. If their goal is to start playing with their kids or grandkids again, we plan out how to make that happen,” she says.