Fibromyalgia is a misunderstood syndrome, commonly referred to as a "mystery condition". This is why building awareness and spreading accurate information is vital.
Originally Posted May 2014
Updated June 2019
As part of the awareness effort, it’s important to know the various criteria, including assessment of pain levels. But the changing way the pain of fibromyalgia is assessed/diagnosed is just a part of the challenges that frustrate fibromyalgia sufferers.
There are actually five crucial issues that frustrate many fibromyalgia patients.
1. The Myth That Fibromyalgia is a “Somatoform Disorder” — aka, “All In Your Head”
One of the key challenges fibromyalgia sufferers face is the pervasive myth among the media, some medical professionals, and some friends and family that fibromyalgia is not a “real” disease, and is instead a “somatoform disorder,” — medicalspeak for “all in your head” or psychosomatic.
When some doctors assume that fibromyalgia symptoms are evidence of some sort of mental health issue, or they are ill-informed about the symptoms and diagnostic criteria, patients face an uphill battle. Without agreement among medical professionals that a condition exists, it is even more difficult for patients to get properly diagnosed, much less treated.
One goal of fibromyalgia awareness, then, is to help encourage the medical world to agree and accept that fibromyalgia is a very real disease, with specific diagnostic criteria, and the symptoms — pain, fatigue, and brain fog among them — are not a mental health problem.
2. “But You Don’t Look Sick!”
Fibromyalgia can be a hidden or “invisible” disease. Patients may not have easily visible signs of illness or injury — no casts or wheelchairs. Along with the fiction that fibromyalgia is a “garbage diagnosis,” or “in your head,” there are some practitioners and members of the public who have a very simplistic view: you must not be sick if you don’t obviously look sick.
Chronic pain and fatigue may not be visible, even to close family and friends, but a key goal of fibromyalgia awareness, is to help the medical world and our communities understand that fibromyalgia is a very real disease, and even though symptoms may not be clearly visible, they profoundly affect sufferers.
3. Staying Informed
It sometimes seem that a day doesn’t go by without a fibromyalgia story or news development arising out of a book, article, website, research journal, or practitioner’s findings. Even dedicated practitioners have a hard time keeping up with the latest developments, and patients face similar challenges, with a near onslaught of new information coming in regularly.
An important goal of fibromyalgia awareness is to encourage both patients and practitioners to put together a list of trusted sources, and stay up on the latest fibromyalgia news. This kind of dedication to empowerment and fibromyalgia information is one of the bests way to ensure that patients are getting the best possible care.
Note: One helpful option? Stay up on the latest fibromyalgia news by signing up for Holtorf Medical Group’s email newsletter (the signup box is on the right hand side of the page).
4. Scams, Potions, and So-Called Fibromyalgia Cures
Because there is no blood test to diagnose fibromyalgia, and with all the differing opinions regarding the causes, diagnostic procedures, and treatment options, it’s an area ripe for marketing abuse. It seems like every day, there’s a new ebook promising a fibromyalgia cure, “miracle” supplement, magazine cover diet fix, or overpriced webinar claiming to offer “natural treatment.”
Unscrupulous marketers, recognizing that fibromyalgia patients frequently don’t get the respect and treatment they deserve, are taking advantage of people in chronic pain. They promote all sorts of products and services that promise a lot, and rarely deliver anything, except a hit to the bank account.
One goal of fibromyalgia awareness is to make patients aware that there are no miracle cures and breakthroughs for fibromyalgia that everyone else doesn’t know about. Rather, proper fibromyalgia treatment requires a multisystem approach – learn more about treating fibromyalgia here.
5. Finding the Right Doctor to Make a Diagnosis
Patients with fibromyalgia often report having to see multiple doctors over a number of years before getting a proper diagnosis. Even then, treatment can be haphazard, as doctors who are not trained in fibromylgia care are often unaware of the latest thinking on how best to treat this complex, multi-factorial condition.
An essential goal of fibromyalgia awareness is to make people aware that their best chance at a timely, successful diagnosis and effective treatment is to start by seeking out a qualified physician who has expertise in fibromyalgia diagnosis and treatment.
At Holtorf Medical Group, our physicians are trained to utilize cutting-edge testing and innovative, multisystem treatments to uncover and address the underlying cause of fibromyalgia. If you are experiencing symptoms of fibromyalgia, but aren’t getting the treatment you need, call us at 877-508-1177 to see how we can help you!