History of Fibromyalgia as a Diagnosis

As anyone who’s ever wondered if they have fibromyalgia probably knows, the different specialities within Western medicine are not necessarily on the same page in terms of the way they diagnose and treat pain.  Rheumatology has traditionally been the specialty people look to for help with fibromyalgia, yet there are rheumatologists out there who don’t even consider it to be a real disorder (I know, because I had the misfortune of trying to see one of them as a patient).

When you know a little bit about the history of our scientific understanding of pain, the present situation starts to make a bit more sense.  We are living at a time when the medical field’s understanding of pain and the nervous system is changing rapidly.   The discoveries researchers have made in the lab have not quite yet made it all the way into exam rooms where doctors are treating patients.

A little background knowledge can help you to understand why the health care system has been handling this issue so badly.  This, in turn, can help you to speak with more confidence and authority when dealing with those who question whether or not fibromyalgia is a real condition.

Here we go.

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As far back as the 1700′s, muscle pains were known as “rheumatism” and “muscular rheumatism.” (Ianici & Yunus).

The term “fibrositis” was coined by Sir William Gowers, a British neurologist, in 1904.  The word “referred to the local tenderness and regions of palpable hardness in the muscle, which he attributed to inflammation of fibrous tissue.” (Argoff, Smith, and Evans).

Over the course of the 20th century, doctors used the term fibrositis to refer to myofascial pain syndrome and fibromyalgia,”…as well as almost any unexplained musculoskeletal pain problem.”  These problems were poorly understood, and doctors often assumed that the cause was psychological in nature (or, in other words, that the patient was crazy). (Argoff, Smith, and Evans).

In the 1950′s, two doctors named Janet Travell and David Simons came up with a theory explaining trigger points, which are sections of muscle fibers which become irritated and harden into what is often referred to as a muscle knot.  Janet Travell used her groundbreaking trigger-point-relieving techniques to help then-Senator John F. Kennedy with his “disabling back pain” in 1955.  He relied on Dr. Travell so much that she was appointed White House physician during his presidency, as well as the presidency of Lyndon B. Johnson. (Argoff, Smith, and Evans).

Travell and Simons wrote several books on trigger points and how to treat them.  These doctors did a great service to chronic pain patients, for they provided theory of muscular pain that stemmed neither from a rheumatological condition, nor from the patient’s emotions.  This helped to give pain patients a bit more credibility in the eyes of doctors.

Unfortunately, the field of medicine as a whole still had a long way to go. Through the 1970′s, most medical textbooks still listed the term fibrositis to describe “a disease with strong psychogenic overtones.  (Rosen 1993, as cited by Argoff, Smith, and Evans).  Many people with chronic pain were dismissed as crazy or overemotional.  When Muhammad Yunus, one of the pioneers in fibromyalgia research, told an advisor in medical school that he wanted to study this condition, the response he was given was “‘You will ruin your academic career by dealing with these crazy people.  They’re women.  They’re complainers.  They’re lazy’” (Underwood).

Rheumatologist and ground-breaking fibromyalgia researcher Frederick Wolfe said in an interview, “When the modern era of fibromyalgia started, there were about four or five of us in the U.S. who wrote about it. We saw people who had certain symptoms and we tried to understand what the symptom complex was and what it meant…. When I first started with fibromyalgia you couldn’t get a grant to study it. You sent the grants in and people said, ‘It doesn’t exist. What are you talking about?'”.

Starting around 1976, researchers began to use the term fibromyalgia instead of fibrositis. It’s hard to know who exactly coined the term: many articles give the credit to rheumatologist Muhammad Yunus, but he himself credits others for using the term before him.  The name change signals a shift in condition: rather than looking for an arthritis-like inflammatory condition, now researchers were beginning to look for other causes for patients’ muscular pain (“-myalgia” is the Latin root for pain).

In 1981, Muhammad Yunus and colleagues published the first controlled clinical study of fibromyalgia.  This publication led directly to the medical community recognizing fibromyalgia as a disease.

In 1983, neurologist Clifford Woolfe proposed his theory of central sensitization in a widely-cited letter to the scientific journal Nature.  At the time, it was a controversial groundbreaking theory and was not widely accepted right away.  But today, most researchers believe this increased sensitivity to pain to be the cause of fibromyalgia.  For a great explanation of Woolfe’s work, check out this article.

In 1990, the American College of Rheumatology published a set of standardized criteria for diagnosing fibromyalgia. This is where the well-known concept of tender points comes from: the criteria list 18 possible points on the body, and 11 of them must be sore and tender to the touch on the patient’s body for a diagnosis of fibromyalgia to be made.

In 2010, the American College of Rheumatology proposed a preliminary set of updated criteria for diagnosing fibromyalgia. One significant change in the criteria is that the updated version does away with relying upon the “tender points” test for diagnosing the disorder.

For this reason, I would urge you to steer clear of any medical practitioner who insists that you need to have a certain minimum number of tender points to have fibromyalgia: to me, it is simply a sign that they are not up to date on their research.

I will be adding more information to this as I find it!

Sources:

Argoff, C., Smith, H., and Evans, R.: Myofascial Pain Syndrome.  Clinical Summary for Medlink Neurology website.

Inanici F, and Yunus MB: History of fibromyalgia: past to present. Current pain and headache reports,  Oct. 2004.

Underwood, A. “The Long Search for Fibromyalgia Support.”  New York Times, Oct. 2009.

Wolfe, F. Interview with American College of Physicians Internist, May 2009,

Woolfe, C. “Central Sensitization: Uncovering the Relation Between Pain and Plasticity.”  Anesthesiology, 2007.

Elsevier Health Sciences. (2007, June 25). Further Legitimization Of Fibromyalgia As A True Medical Condition. ScienceDaily. Retrieved February 21, 2017 from www.sciencedaily.com/releases/2007/06/070625095756.htm