Fibromyalgia: The Invisible Battle Of Millions 

A version of this article first appeared in the September 2025 issue of Best Holistic Life Magazine. It has been updated and expanded for readers of The Fibro Compass℠. The quotes you’ll read here are my clients’ exact words. Only their names and a few details have been changed to protect their privacy.

Imagine having the flu—aching all over, exhausted from simply moving from bed to couch—but this time, you never get better. That’s the reality for millions of people living with fibromyalgia, a condition that remains largely invisible to the medical system, employers, family, and even friends.

“I wake up exhausted,” Shannon says, “like I was moving furniture all night.” Jenn adds, “If I do what I want to do, I can’t do what I need to do.”

These are real quotes from my fibromyalgia clients, with some names changed to protect privacy. Their stories may sound familiar — because you may have felt the very same way.

These struggles aren’t unique to Shannon and Jenn. Over 500 million people worldwide are diagnosed with fibromyalgia, a chronic condition that causes widespread body pain, fatigue, brain fog, and poor sleep. It’s the leading cause of musculoskeletal pain in middle-aged women, although men and children can also be diagnosed. [1]

For millions, fibromyalgia sneaks in like an invisible thief, stealing energy, health, and sleep, along with hobbies, careers, and the ability to be who they want to be.

Watching his girls play in the backyard, Josh feels that loss. “I used to pick my girls up. Now, I’m so tired I can’t even lift my arms,” he says. Chrissy feels it, too. “If being in this much pain is what my life is going to be like,” she confides, “I don’t want to live like this.” Chrissy isn’t alone. Thirty percent of fibromyalgia patients experience suicidal thoughts, with six percent attempting suicide. [2]

In addition to pain and fatigue, many face cognitive challenges or brain fog. Jenny’s wake-up call came when she got lost going somewhere familiar and drove into oncoming traffic—with her baby in the car. “I can handle pain and fatigue,” Rachel adds, “but when my brain doesn’t work, what do I do? I can’t even read or make sense of a TV show!”

The Battle for a Diagnosis

Like diabetes or depression, someone with fibromyalgia may look perfectly normal, including their lab results and x-rays. Since fibromyalgia doesn't have a definitive and objective diagnostic test, patient suffering often goes unseen and unbelieved. Beyond their symptoms, patients battle a medical system that often overlooks or misunderstands them.

“I have no idea who to turn to for help and feel very abandoned,” Amy says. “It’s been hard to find doctors who understand.”

Her story is common. One-quarter of fibromyalgia patients see more than six providers — and go an average of nearly six and a half years — before receiving a diagnosis. [3] To complicate matters, doctors usually diagnose fibromyalgia after ruling out other causes — but that doesn’t mean it stands alone. Many people with fibro also live with conditions like endometriosis, IBS, or autoimmune disorders.

When patients are dismissed or misdiagnosed, medical trauma is often the result. At best, they’re told, “There isn’t much we can do.” At worst, they’re labeled as “drug seekers”—a stigma that can follow them for years, tainting their medical records and treatment options.

The Struggle for Effective Treatment

Fibromyalgia was once regarded as a “hysterical woman’s disease.” Symptoms were dismissed as psychosomatic, with patients labeled as hypochondriacs and told their suffering was all in their heads.

In the documentary INVISIBLE, experts speculate that this bias has slowed progress. Although fibromyalgia has been recognized for over two centuries, diagnostic criteria weren’t established until 1990, and the first FDA-approved medication, Lyrica, didn’t arrive until 2005, with Cymbalta and Savella following in 2008 and 2009.

Fortunately, things are shifting. Fibromyalgia is now taken seriously by most providers, and quality research is underway. While it was once estimated that 90% of patients were women, today we know the breakdown is closer to 60% women and 40% men. [4]

With nearly 30% of Long Covid patients now meeting diagnostic criteria for fibromyalgia, this trend will likely continue. The World Health Organization (WHO) estimates that 6% of people who get COVID go on to develop Long Covid.[5] And since COVID isn’t going away anytime soon, the number of people living with these chronic conditions is only going to climb. Long Covid affects a wide range of people, including those who were previously healthy. As a result, many who once ignored fibromyalgia are now getting a taste of what it’s like to live with a chronic illness.

This is finally pushing the medical community — and the public — to give conditions like Long Covid, fibromyalgia, and other long-ignored chronic illnesses the attention they deserve.

Tonmya, a first-in-class medication for fibromyalgia, was just approved on August 15, 2025. This marks the first new FDA-approved drug for fibromyalgia in over 15 years. When interviewed for Episode 168 of the Fibromyalgia Podcast^®, Dr. Lederman said, "I hope that our efforts [in developing Tonmya] will energize fibromyalgia patients to be out there talking to their healthcare providers, talking to their congressmen and women, talking to their senators, talking to everyone... because it's been a long road for many of us." [6]

Today, many treatment options exist, and remission is possible. But for patients, finding the right support is still far from easy.

The Medical Knowledge Gap

One of the biggest challenges is the lack of training in pain management. On average, U.S. medical schools dedicate just 0.3% of their curriculum to pain education—about nine teaching hours in total. In Canada, it’s slightly better at 19.5 hours. [7] And remember, that’s not just fibromyalgia — that’s the total number of hours taught on all types of pain, both acute and chronic.

While our medical providers receive minimal training in pain management, a Certified Fibromyalgia Coach^® completes a minimum of 370 hours of training focused specifically on helping fibromyalgia patients improve their symptoms and quality of life.

No wonder chronic pain patients struggle—fibromyalgia or not.

A recent study showed fibromyalgia tied for last place in the amount of research published in rheumatological journals. [8] Since research drives medical education, this helps explain why so many providers are unprepared to help patients. For comparison, rheumatoid arthritis affects less than one percent of the population, yet has seventeen times more research articles published.

A 2012 survey of physicians illustrates this gap in medical knowledge in stark detail. More than half of the physicians reported that their training on fibromyalgia was inadequate (54%). Nearly half said they weren’t confident distinguishing fibromyalgia from other conditions with similar symptoms (48%), and more than a third weren’t confident they could recognize the symptoms at all (38%). Only 48% of physicians were aware of the ACR Fibromyalgia Classification Criteria — meaning a patient’s chance of finding a physician who knows the proper diagnostic criteria is less than 50/50. [9]

This is where awareness becomes crucial.

By raising the profile of fibromyalgia, we can increase funding, encourage more research, and ultimately build a generation of providers better equipped to treat it. At the International Fibromyalgia Coaching Institute (IFCI), we also work to close this gap by providing training programs to become a Certified Fibromyalgia Coach^® or Advisor. This allows patients to become the professionals who support others through education, coaching, and peer connection. 

Resources and Support

If you or someone you love may be living with fibromyalgia, don’t wait for medical education and research to catch up. Begin by educating yourself and building a support system.

At The Fibro Compass℠, our mission is to help you find your direction and reclaim your life. Here, you’ll find articles written by people who understand what it means to live with fibromyalgia and have helped others find real solutions.

You can also explore the Fibromyalgia Podcast^®, where I interview top doctors, researchers, and patient advocates, sharing the latest treatments and inspiring stories. Episodes are available on all major podcast platforms, YouTube, and FibromyalgiaPodcast.com, where you can access my books and other resources for free.

Fibromyalgia is an invisible battle affecting millions who feel misunderstood, frustrated, and abandoned by their providers. Raising awareness and improving medical training are crucial for helping patients thrive.  

With one in sixteen people affected, someone in your life is fighting this invisible battle now.

Together, we can make this battle visible and improve the lives of millions.

Action Steps

• If this article resonates with you, start by bringing it to your doctor and opening a conversation about fibromyalgia.
• If your provider isn’t familiar with the condition, don’t give up—support exists outside the exam room.
• Consider working with a Certified Fibromyalgia Coach^®. Our coaches combine personal experience with proven tools to help reduce pain, boost energy, clear brain fog, and reclaim your life.