Fibromyalgia Is Real?

Lack of Cause and Diagnostic Tools Creates Misconceptions

By Adrienne Dellwo 

 Medically reviewed by Marissa Sansone, MDPrint 

There have long been medical conditions for which people will suffer symptoms even when doctors have no idea what is causing the illness. Scientists will refer to these as idiopathic, meaning that there is no apparent or known cause. Fibromyalgia is one such disorder, alongside chronic fatigue syndrome and certain types of epilepsy, that is considered idiopathic.¹

To some people, this may be misinterpreted as to mean “not real” or, even worse, “all in one’s head.” But this is clearly not the case.

Fibromyalgia is a very real medical condition that affects around four million Americans, according to statistics from the Centers for Disease Control and Prevention.² Despite the fact that its cause has not yet been identified, fibromyalgia has characteristics and symptoms that are consistent among those who suffer the disorder.

Chronic widespread pain is the primary symptom of fibromyalgia. Most people will also experience moderate to severe fatigue, sleep disturbances, cognitive impairment, and sensitivity to touch, light, and sound.²

For reasons unknown, fibromyalgia affects women far more than men and is often seen in families, particularly first-degree relatives like parents, siblings, and children.³

Why Fibromyalgia Remains a Mystery

One of the reasons why people often question the existence of fibromyalgia is that it doesn’t have a single, identifiable cause, such as an infection, tumor, or congenital defect. And, while genetics are believed to play a part, scientists have yet to uncover any genetic anomaly that could explain the spectrum of symptoms experienced with fibromyalgia.

As such, fibromyalgia cannot be defined by its cause but rather by symptoms for which there are no other explanations. With no blood test or imaging test able to confirm the condition, doctors have to exclude all other possible conditions before a diagnosis can be made. Even then, a person must meet certain diagnostic criteria before a diagnosis can be considered definitive.³

Mechanism of Symptoms Is Also Unclear

Another reason for the public’s confusion about fibromyalgia is that the disorder is one of extreme unpredictability. Persons living with fibromyalgia will often experience long periods of remission only to suddenly, and sometimes inexplicably, have a severe flare-up of symptoms.

In some cases, an emotional disturbance can trigger a flare-up, leading some bystanders to assume that the pain is psychological rather than physical. At other times, a physical injury or even PMS can spur symptoms, creating the appearance that the person’s emotional response is the real culprit rather than some “phantom” pain.³

NIH Genetics Home Reference. Fibromyalgia.

It is an impression that is only strengthened when a person experiences a brain fog, a symptom of fibromyalgia characterized by the dulling of one’s emotional or cognitive response.

Because of these things, people with fibromyalgia will often conceal their symptoms for fear of being labeled neurotic, hysterical, or hypochondriac.

Living With Someone With Fibromyalgia

One of the challenges of living with fibromyalgia is that even loved ones often have a hard time getting their heads around what the disease is all about. It is a condition characterized by uncertainty and one for treatment may or may not always be effective.

If living with someone with fibromyalgia, acceptance of the disease—namely the unpredictability of the disease—is the first step to coping. By doing so, you are able to remove doubt from the conversation and offer support whenever symptoms do flare. More importantly, you remove the stress that can make the condition worse.

Until we have a better idea of what causes fibromyalgia, support from family and friends may end up being one of the best facets of treatment for those suffering this still-mysterious condition.

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By Adrienne Dellwo
Dellwo was diagnosed with fibromyalgia in 2006 and has over 25 years of experience in health research and writing.