The Reality of Fibromyalgia

It's a real but misunderstood condition.

Patients with fibromyalgia have often felt their doctors didn't consider their condition "very legitimate." It is considered to be one of many invisible illnesses, which are conditions where the symptoms aren't always visible to others.

Consequently, on top of their daily struggle with pain, patients with fibromyalgia are sometimes forced to fight another battle—convincing healthcare providers, friends, coworkers, and others that their condition is real and that their pain is not all in their head.

Here is more information about fibromyalgia and the realness of this condition.

What Is Fibromyalgia?

According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), fibromyalgia "is a chronic (long-lasting) disorder that causes pain and tenderness throughout the body," meaning that a person experiences aches and pains all over their body. Per the Office on Women's Health (OWH), as many as 4 million American adults have to manage symptoms of fibromyalgia.

Fibromyalgia appears to be due to brain-body miscommunication, where signals between the brain and the nerves amplify everyday pain. For example, a person with fibromyalgia might feel that a light touch on their shoulder is more painful compared to someone without the condition.

Individuals with fibromyalgia usually deal with fatigue as well as issues with sleep, mood, and memory (sometimes referred to as "fibro fog"). Other possible signs of fibromyalgia may include:

  • Muscle fatigue or stiffness
  • Temperature, light, noise, and odor sensitivity
  • Digestive problems (e.g., IBS)
  • Arm and leg numbness

Furthermore, women tend to experience fibromyalgia more than men, and most people develop the condition around middle age—though it can affect any person at any age. According to the OWH, fibromyalgia is also frequently seen in those who smoke, have rheumatic (joint) conditions, have obesity, sustained any brain or spinal cord trauma, or have a family history of fibromyalgia.

How Are Healthcare Experiences for People With Fibromyalgia?

Those with fibromyalgia often report having a hard time when it comes to seeking medical care for their diagnosis. Researchers of a March 2018 Dialogues in Clinical Neuroscience article noted that patients who had been diagnosed with the condition reported seeing healthcare providers who did not believe in the existence of fibromyalgia.

Further, a June 2021 study conducted in Sweden and published in SAGE Open Nursing analyzed the responses of 409 patients with fibromyalgia in regard to their healthcare experiences. The researchers found that when the patients interacted with healthcare providers:

  • 30.5% felt that they were rarely taken seriously if at all
  • 46% didn't think or barely thought their diagnosis was understood
  • 54% experienced a lack of help with their fibromyalgia and healthcare providers' understanding of how the condition affected them

Not being believed can have emotional consequences. "It was maddening. I felt like most of the doctors I saw were not acknowledging that I was really in pain," said Shelley Kirkpatrick of Bellefontaine, Ohio, who began experiencing fatigue and excruciating joint and muscle pain in 2004.

"I felt they were thinking I was exaggerating my symptoms or that I was making them up entirely," Kirkpatrick said. "Even to the point where I saw a neurologist who told my husband to take me to a psychiatrist because there was nothing wrong with me." Finally after two years of fruitless tests, her doctor told her she had fibromyalgia.

Kathleen Wisz of Woodridge, Ill., dealt with on-and-off pains in her neck and upper back for 20 years before she was diagnosed with fibromyalgia in 1992. Over the course of those frustrating two decades, most healthcare providers recommended she be treated by a psychiatrist. Wisz reacted by withdrawing into herself.

"I just stopped going to see doctors. It was horrible, I wouldn't talk to anybody about what I was feeling," Wisz said, noting that often she'd just blame herself. "I felt that maybe if I could learn to relax or whatever, then it would go away."

During a six-month spell of all-over aches, pains, and flu-like symptoms, Wisz was sent to a rheumatologist who gave her a diagnosis of fibromyalgia. "I never heard the word before he said it," Wisz said. Relieved to finally have a diagnosis, Wisz started reading about the condition and joined a support group.

Because fibromyalgia presents as a cluster of nebulous symptoms, and there is no definitive cure, treatments are based on trial and error. This can be tremendously frustrating to physicians and that means patients have to cope with the fallout.

Different Perspectives on Fibromyalgia

There's by no means unanimity in the medical community that fibromyalgia is a legitimate condition.

"There's an extremely wide range of opinions of physicians, ranging from it doesn't exist at all to it's a true illness. At a guess I'd say it's probably no better than fifty-fifty," said John Kincaid, MD, a neurology professor at the Indiana University School of Medicine, in Indianapolis, and a former board member of the American Association of Neuromuscular and Electrodiagnostic Medicine. "In fact I was at a dinner with two other nerve-and-muscle neurologists and one was a believer and the other was what you could call an 'eye roller,'" Dr. Kincaid added.

Todd Sitzman, MD, a past president of the American Academy of Pain Medicine and medical director of Advanced Pain Therapy, thinks primary care doctors are frustrated by fibromyalgia. They "don't like treating patients with this condition chronically, year after year," Dr. Sitzman said, since there's no cure.

"Sometimes [doctors] take out their frustrations on the patients and blame the patients for the illnesses," said fibromyalgia expert Daniel Clauw, MD, director of the Chronic Pain and Fatigue Research Center at the University of Michigan, in Ann Arbor. "There's a long history of this in medicine."

Skepticism extends beyond the medical community too. "I had a handicap decal for my car because I can't walk long distances," Kirkpatrick said. "And people seem almost angry that I'm parking in a handicapped spot because I don't have a deformity, and I don't walk with a walker or a cane. People have asked me, 'What's wrong with you?' and when I tell them about fibromyalgia they look at me like I've just made something up out of the blue."

Overall, the fact that women are disproportionately affected by fibromyalgia, the symptoms are complex, and there is no cure. What's more, even though fibromyalgia may have both genetic and environmental factors for development, researchers are still trying to understand what exactly causes fibromyalgia, according to NIAMS. For these reasons, many patients and some healthcare providers have said that fibromyalgia is under-recognized and under-treated in the US.

It can be difficult claiming a medical condition in everyday life when, on the outside at least, you appear fine—but fibromyalgia and its health effects are legitimate.

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