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Fibromyalgia: The Long Quest To Legitimacy

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As we approach another Fibromyalgia Awareness Day (May 12), it’s a good time to take a look back and see just how far we’ve come. For those of us who live with the daily pain, fatigue and multiple other fibromyalgia symptoms, progress often seems interminably slow. In fact, it has been a long, painful journey––significantly longer than it should have been. But we have made great progress, and that is well worth recognizing.

According to the International Medical Informatics Association in their Yearbook of Medical Informatics 2000, it takes an average of 17 years for new evidence-based research to be adopted into clinical practice. During that time, the new knowledge proceeds through three stages:

  • Awareness
  • Acceptance
  • Adoption

If 17 years is average, that means some medical knowledge is adopted more quickly and some more slowly. Unfortunately, fibromyalgia has been in the “more slowly” category.

History of Fibromyalgia

Following are some of the most significant milestones in the history of fibromyalgia:

  • 1600s – Fibromyalgia-like symptoms were first given a name: muscular rheumatism.
  • 1816 – Dr. William Balfour, surgeon at the University of Edinburgh, gave the first full description of what we now know as fibromyalgia.
  • 1824 – Dr. Balfour described tender points.
  • 1904 – Sir William Gowers coined the term “fibrositis” (literally meaning inflammation of fibers) to denote the tender points found in patients with muscular rheumatism.
  • 1972 – Dr. Hugh Smythe laid the foundation for the modern definition of fibromyalgia by describing widespread pain and tender points.
  • 1975 – The first sleep electroencephalogram study identifying the sleep disturbances that accompany fibromyalgia was performed.
  • 1976 – Because no evidence of inflammation could be found, physicians changed the name from fibrositis to fibromyalgia (meaning pain in muscles and tissues).
  • 1981 – The first controlled clinical study with validation of known symptoms and tender points was published.
  • 1987 – The American Medical Association recognized fibromyalgia as a real physical condition.
  • 1990 – The American College of Rheumatology developed diagnostic criteria for fibromyalgia to be used for research purposes. The criteria soon began to be used by clinicians as a tool to help them diagnose patients.
  • 1990s – The concept of neurohormonal mechanisms with central sensitization was developed.
  • 2007 – The FDA approved the drug Lyrica for the treatment of fibromyalgia. This was the first drug ever to receive FDA approval as a fibromyalgia treatment. Since then, two additional medications – Cymbalta and Savella – have also received FDA approval for the treatment of FM.
  • 2012 – The Social Security Administration issued a ruling recognizing fibromyalgia as a legitimate impairment.
  • 2012 – The first diagnostic blood test for fibromyalgia was introduced. The FM/a® test by EpicGenetics is 95% accurate and is covered by Medicare and most insurance plans.
  • 2015 – The Centers for Medicare and Medicaid Services and the National Center for Health Statistics adopted the World Health Organization’s ICD-10-CM codes, which finally gave fibromyalgia an official diagnostic code (M79.7) – once and for all answering the question, “Is fibromyalgia real?” with a great big YES!
  • 2018 – A second diagnostic blood test, which relies on RNA gene expression, was introduced. The IsolateFibromyalgia® test by iQuity is 94% accurate, but is not yet covered by most insurance plans.

From Then to Now – Look How Far We’ve Come!

I’ve personally watched as fibromyalgia has progressed from obscurity to legitimacy. When I was first diagnosed 23 years ago, it was difficult to find anyone who had ever even heard the word “fibromyalgia,” let alone knew what it was – and that included doctors. Not surprisingly, it took me seven years to get a diagnosis. Once I finally had a diagnosis, I began searching for information, but found very little. Very few doctors had even heard of it, and of those who did, many thought it was psychosomatic. Little was offered in the way of treatment.

Thankfully, things are now very different. Today it would be difficult to find someone who hasn’t at least heard of fibromyalgia. And most doctors accept it as a legitimate physical illness, although there are still a few holdouts who persist in thinking that it’s “all in our heads.”

New research on fibromyalgia is being published weekly and there are multiple fibromyalgia treatment options available, including both traditional medicine and alternative therapies. There is even a fibromyalgia test now available. It’s a blood test that has quickly gaining acceptance as a diagnostic tool for fibromyalgia – so much so that it is covered by Medicare and most insurance companies. A second type of diagnostic blood test was announced in 2018 and a possible third test is still in the research phase.

What Has Made the Difference?

What has taken fibromyalgia from an obscure, unknown condition to an widely accepted disease recognized by both the medical community and government entities? Of course, the dedication of medical researchers and patient advocates, who have put in many years and untold hours of work in their efforts to help fibromyalgia patients, has been at the core of our progress. But there is one event that I would posit has made the biggest difference.

The 2007 FDA approval of Lyrica as the first-ever drug for the treatment of fibromyalgia and Pfizer’s subsequent campaign of television ads is what finally brought fibromyalgia to center stage. Those ads, which continue to run a dozen years later, let the general public know about this painful illness. The FDA’s approval gave us credibility – after all, the FDA wouldn’t approve a drug for a disease that didn’t exist – and Pfizer gave us publicity. Suddenly doctors, who had previously refused to accept fibromyalgia patients because they didn’t know how to treat us, felt they had something to offer us. Regardless what any of us individually may think about Lyrica or its effectiveness, we have to acknowledge that the development, approval and promotion of a drug for fibromyalgia has helped us all by bringing fibromyalgia awareness to the forefront.

As we continue to move forward, let’s not forget the long journey it has taken us to get here. We are extremely grateful to all the physicians, researchers and patient advocates who have given so much of themselves to help us along the way. Fibromyalgia is finally officially recognized as a legitimate illness. Yes, it may take a few more years before everyone understands and accepts that, but we’ll get there. After all, look how far we’ve come!

This article, originally published on ProHealth.com on May 12, 2016, was updated on May 1, 2019.


Karen Lee Richards is ProHealth’s Editor-in-Chief. A fibromyalgia patient herself, she co-founded the nonprofit organization now known as the National Fibromyalgia Association (NFA) in 1997 and served as its vice-president for eight years. She was also the executive editor of Fibromyalgia AWARE magazine. After leaving the NFA, Karen served as the Guide to Fibromyalgia and Chronic Fatigue Syndrome for the New York Times website About.com, then worked for eight years as the Chronic Pain Health Guide for The HealthCentral Network before coming to ProHealth. To learn more about Karen, see “Meet Karen Lee Richards.”


Resources:

Balas EA, Boren SA. Managing clinical knowledge for health care improvement. In: Bemmel J, McCray AT, editors. Yearbook of Medical Informatics 2000: Patient-Centered Systems. Stuttgart, Germany: Schattauer Verlagsgesellschaft mbH; 2000:65-70. http://www.ihi.org/resources/Pages/Publications/Managingclinicalknowledgeforhealthcareimprovement.aspx

Green LA and Seifert CM. Translation of Research Into Practice: Why We Can’t “Just Do It.” J Am Board Fam Pract November 2005, 18 (6) 541-545; doi: 10.3122/jabfm.18.6.541

Inanici F, Yunus MB. “History of Fibromyalgia: Past to Present.” Curr Pain Headache Rep. 2004 Oct;8(5):369-78. https://www.ncbi.nlm.nih.gov/pubmed/15361321

Stonecypher, Sherron M. “History of Fibromyalgia.” Lewis & Clark College. 7/7/99.

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6 thoughts on “Fibromyalgia: The Long Quest To Legitimacy”

  1. GeekyGranny says:

    As always, your articles are informative and pretty much right on. I’ve followed you for some time and appreciate all the research you do for us fibromates.

  2. hendosrus says:

    Hi,

    my daughter has joint degredation as in osteoarthritis and her specialist says its a result of fibrmyalgia. She also said this was an autoimmune condition.

    Have any fibromyalgia sufferers out there had any experience of taking supplements to fight the decay of their joints?

    I’ve read up on various offerings and there seems to be lots of ways to thrown your money away.

    But one that I like the sound of has Type 2 Collagen as the active ingredient. The product is undenatured which means it’s not heat treated which apparently means it’s a whole lot more effective.

    My uncertainty is that I’m unsure whether someone with an autoimmune condition as the underlying cause of their osteo/fibromyalgia can safely take a supplement like this which is ultimately made from chicken cartilage if I’m not mistaken.

    Any thoughts much appreciated.

  3. stopthepain80 says:

    my NAME IS RUSSELL MacNevin i was diagnosed in 10 80s after a car accident in 1978 and was in another in 84 i tried everything i wish it was the same in Canada now i am starting a vintage jewelry business selling vintage jewelry i am setting up at a local flea market to raise money for the local fibromyakgia group here in London on i am hoping to start a fibro association here in Canada or at least here in Ontario i did try fibro sleep d-Brose but could not afford to on a low budget another thing how can i get in touch with your fibro association in the U.S. could there be a chapter of the U.s. in Canada

  4. Jobhunter says:

    The only thing I have heard of is Curcumin. I have not tried it.

  5. Jobhunter says:

    The only thing I have heard of is Curcumin. I have not tried it.

  6. Prawn says:

    Yes take beef gelatine
    Buy it on line
    2 teaspoons in hot water to dissolve and then pop it in a tea or coffee as gel form to dissolve and hopefully you should see some help for her ??
    Kind regards
    Dawn xxxxx

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