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 is generally 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 meeting one of them).
When you know a little bit about the history of medicine, 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 in flux. 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.
I have to admit, it was pretty hard to find legitimate sources describing the history of fibromyalgia. This is the best I could do for now; I will definitely be adding to this as I can.
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 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?'” (Interview with ACP Internist)
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 writes that others were 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 published the first controlled clinical study of fibromyalgia. You can actually view an abstract for that groundbreaking study here http://www.ncbi.nlm.nih.gov/pubmed/6944796
In 1983, neurologist Clifford Woolfe proposed his theory of central sensitization. Central sensitization refers to the process by which some people’s nervous systems become extra sensitive following a traumatic or painful physical experience. At the time, it was a 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. Here is a link to the abstract: http://www.ncbi.nlm.nih.gov/pubmed/2306288
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 met the minumum number of tender points to have fibromyalgia: it is simply a sign that they are not up to date on their research. You can view the 2010 Preliminary Diagnostic Criteria here: https://www.rheumatology.org/practice/clinical/classification/fibromyalgia/2010_Preliminary_Diagnostic_Criteria.pdf
I will be adding more information to this as I find it!
Argoff, C., Smith, H., and Evans, R.: Myofascial Pain Syndrome. Clinical Summary for Medlink Neurology website, http://www.medlink.com/medlinkcontent.asp, accessed January 10, 2012. **There is no direct link to this section; you will have to type “myofascial pain” into the search bar in the upper left of the page to find the clinical summary for “myofascial pain syndrome.”**
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, found at http://www.nytimes.com/ref/health/healthguide/esn-fibromyalgia-ess.html.
Wolfe, F. Interview with American College of Physicians Internist. May 2009, accessed at http://www.acpinternist.org/archives/2009/05/fibromyalgia.htm
Woolfe, C. “Central Sensitization: Uncovering the Relation Between Pain and Plasticity.” Anesthesiology, 2007. Accessed at http://www.dundeeopt.com/wp-content/uploads/2010/12/Woolfcentralsensitization2007.pdf