av You can find the video after the text
In this video, I will tell you about the 18 test points for fibromyalgia. What they are, how they were created, and what relevance they have when diagnosing fibromyalgia today.
My name is Andreas Person and I am a physiotherapist and specialist in pain and pain rehabilitation.
If you instead want more of a practical review on how the tender points are tested, you can watch my video on the diagnostic criteria from 1990. If you want information about trigger points, which is something quite different than the test points for fibromyalgia, I have made another video about that which you can watch if you click on the link above.
In 1986, a committee was formed consisting of representatives from various pain clinics in the United States and Canada to agree on research criteria for fibromyalgia. Before that, the various pain clinics used their own criteria when studying the disease. Most criteria were different combinations of the most common symptoms associated with fibromyalgia and some form of test of tenderness in the body.(1)
The fact that the criteria at the clinics were different meant that one person could meet the criteria at one clinic while the same person would not meet the criteria for fibromyalgia at another clinic. The research suffered from the fact that there was no consensus. When different inclusion criteria for fibromyalgia were used in different studies, it meant that the results could not be generalized, that is, the results in one study could not be compared with the results in other studies and that they could not be applied reliably to patients.(1)
The committee, chaired by Frederick Wolfe, started a study with a group of people diagnosed with fibromyalgia and a test group with people with chronic pain who were not diagnosed. The purpose of the study was to arrive at criteria that could be used in the research and that representatives of all the different clinics could agree on. The test participants had to fill in a lot of forms where they estimated how stiff they felt, how tired they were, if weather changes affected the symptoms, how much anxiety, stomach upset and headaches they had, and a large number of other factors. The participants also had to write down all the areas where they had pain in the body.(1)
The researchers also performed several physical tests, such as testing for tenderness in the skin by rolling the skin between the fingers and pain thresholds in nine different areas of the body using an algometer that measures how hard you need to push for it to hurt.(1)
In addition, the researchers pressed on 24 different points in the body with 4 kg of pressure to see how many of the points did hurt. They then performed a statistical analysis to know which factors mattered most to determine whether a person had fibromyalgia or did not. The 24 test points were the factor that was best at distinguishing those who had been diagnosed with fibromyalgia and those who had not. The researchers determined that at least 13 points needed to be at least a little painful to distinguish those with fibromyalgia.(1)
The final criteria were changed so that at least 11 out of 18 points need to hurt. This was done mostly for practical reasons to shorten the examination time. In addition to the number of painful test points, you also needed to have had generalized pain for at least three months. Generalized pain was defined as pain both above and below the waist, pain on both the right and left sides of the body, and axial pain, which meant pain in the lumbar spine, thoracic spine, neck, or front of the chest.(1)
The combination of generalized pain and pain in at least 11 of the 18 test points were the criteria that could best distinguish between those who had been diagnosed with fibromyalgia and those who had not. The criteria had a sensitivity of 88.4%, which meant that such a large proportion of those who had fibromyalgia already, met the criteria and a specificity of 81.1%, which meant that 81.1% of those who were not diagnosed, did not meet the diagnostic criteria.(1)
This meant that the criteria were good but not perfect. That 88.4% of those who had fibromyalgia met the criteria meant that 11.6% of those who had been diagnosed before did not meet the criteria and that 81.1% of those who were not diagnosed did not meet the criteria meant that as many as 18.9 % of those who were not diagnosed met them.(1)
But even though the criteria were far from perfect, they meant that researchers from the various clinics had agreed. The agreed criteria were primarily intended to be used in research. When you had the same inclusion criteria for participants in different studies, you could compare the results between the studies. The results could also be generalized to patients, that is, they were also considered to apply to patients who met the criteria. The criteria that were created later came to be known as the American College of Rheumatology 1990 criteria, or the ACR 1990 criteria.(1)
The ACR-1990 criteria have meant a great deal to the research on fibromyalgia. After the criteria were published, research on fibromyalgia has increased dramatically and great progress has been made both on finding the causes of the disease and also on treatments that alleviate the symptoms and that improve a person’s ability to live a productive and meaningful life despite the disease.(2) However, the criteria have also caused many misunderstandings, and also that many who have the disease fibromyalgia have not been diagnosed in healthcare. This has led to the criteria not being recommended for diagnosing fibromyalgia, which they were never really intended for.(3 It has also resulted in the creation of new criteria with better usability for diagnosis in healthcare.(4)
I am now going to talk about some of the misunderstandings created as a result of the 1990 criteria and how attempts have been made to correct them through the new criteria.
A common misconception is that there is something special about the 18 test points. I have on several occasions talked to doctors who believe that people with fibromyalgia only have pain in the 18 points, that the disease only involves pain in the muscles or that if a person has severe pain in a place other than a test point, it means that the person does not have fibromyalgia.
The pain in the 18 test points is not the core of what it means to have fibromyalgia! People with fibromyalgia easier get pain everywhere in the body, in the joints, in the head, in the adipose tissue, and the skin. Fibromyalgia means that it is easier to get pain in all parts of the body that can hurt, along with several other symptoms such as fatigue, numbness and concentration, and memory difficulties.(5)
Another important fact is that the purpose of the ACR 1990 criteria never was to diagnose patients, but as a tool to determine which people should be included in research studies on fibromyalgia.(1) In reality, however, the criteria have been and still are used to diagnose patients with fibromyalgia. Most people I have met in healthcare believe that a patient must meet the diagnostic criteria from 1990 to have the disease. As I said earlier, the criteria captured only 88.4% of those who were diagnosed, which meant that 11.6% of those who were considered to have fibromyalgia did not meet the criteria.
I have countless times met patients in healthcare who have been tested and not been diagnosed just because only nine or ten points have hurt when tested, although they have had many of the other typical symptoms of fibromyalgia and no other disease better explained the symptoms. So to speak in plain text. You can make the diagnosis of fibromyalgia in a person who does not meet the criteria from 1990, that is, even if less than 11 points hurt when pressed if the clinical picture indicates that the person has fibromyalgia.
Another misconception is that fibromyalgia is a woman’s disease. The reason for this is probably that those who had diagnosed the participants in the ACR-1990 study had a higher tendency to diagnose women. Research shows that doctors assess and treat men and women with chronic pain differently.(6) That the criteria for fibromyalgia from 1990 were based on patients who had received or had not received a diagnosis which in turn was not based on the opinion of the assessor and that fibromyalgia even before the criteria, was described as a woman’s disease(7) means that there was a high risk for so-called gender bias.
In a study that calculated the proportion of adults who met the criteria for fibromyalgia according to the 1990-criteria, only 9% were men.(8) This has reinforced the image that fibromyalgia is a woman’s disease.(9)
In retrospect, it has been shown that the proportion who have fibromyalgia who are men is between 30 and 50%.(10-12) These men have the typical symptoms of fibromyalgia such as pain in large parts of the body, a more sensitive pain regulation system, insomnia, fatigue, and concentration and memory disorders, but they often do not meet the criteria from 1990 with at least 11 out of 18 test points that hurt.
Check out the video ”men with fibromyalgia” for more information.(13) The fact that many who have the symptoms and the changes in the body’s physiology that are associated with the disease fibromyalgia but who still have not been diagnosed due to the criteria from 1990 has led Frederich Wolfe and his colleagues to develop new criteria for the disease. Criteria that are better suited for use in healthcare as a tool to determine whether a person has the disease fibromyalgia or not.
The first proposal for new criteria was presented in 2010. The criteria did not contain the 18 test points but instead the criteria consisted of the test person having pain in sufficient large parts of the body, so-called generalized pain in combination with other typical symptoms for fibromyalgia such as fatigue, concentration, and memory difficulties.
In addition, the doctor’s subjective opinion on whether the patient had many or few related symptoms, based in part on a list of 41 related symptoms was included.(14) These criteria were criticized because the definition of generalized pain was not sufficiently extensive, which meant that a person with relatively local pain could be diagnosed and because the doctor’s assessment of the 41 related symptoms was unnecessary.(15)
A revision was done in 2016, which meant that you needed to have pain in larger parts of the body to meet the criteria and the doctor’s subjective assessment was removed. The updated criteria from 2016 are thus the criteria recommended for use in healthcare as a tool for diagnosing fibromyalgia.(4) If you want, check out my short video about the criteria from 2016. In the description text for that film, there is also a link to a form that can be used to test the criteria.
So to summarize. The criteria for fibromyalgia from 1990 with the 18 test points were created mainly for research, to be able to compare research results between different studies on fibromyalgia. However, the criteria also began to be used in health care for diagnostics of the disease and they are unfortunately still widely used for this purpose. The criteria from 1990 miss a large proportion of those who have fibromyalgia, including men with the disease. New diagnostic criteria where the 18 test points are not included have been developed and these new criteria are the ones that are recommended for making the diagnosis in health care.
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References
1. Wolfe F, Smythe HA, Yunus MB, Bennett RM, Bombardier C, Goldenberg DL, et al. The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia. Report of the Multicenter Criteria Committee. Arthritis Rheum. 1990;33(2):160-72.
2. Littlejohn G, Guymer E. Key Milestones Contributing to the Understanding of the Mechanisms Underlying Fibromyalgia. Biomedicines. 2020;8(7):223.
3. Wolfe F. Stop using the American College of Rheumatology criteria in the clinic. J Rheumatol. 2003;30(8):1671-2.
4. Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RL, et al. 2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria. Semin Arthritis Rheum. 2016;46(3):319-29
5. Hawkins R. Fibromyalgia: A Clinical Update. J Am Osteopath Assoc. 2013;113(9):680-9.
6. Hamberg K, Risberg G, Johansson EE, Westman G. Gender Bias in Physicians’ Management of Neck Pain: A Study of the Answers in a Swedish National Examination. J Womens Health Gend Based Med. 2002;11(7):653-66.
7. Yunus MB. Fibromyalgia syndrome: new research on an old malady. BMJ. 1989;298(6672):474-5.
8. Wolfe F, Ross K, Anderson J, Russell IJ, Hebert L. The prevalence and characteristics of fibromyalgia in the general population. Arthritis Rheum. 1995;38(1):19-28.
9. Muraleetharan D, Fadich A, Stephenson C, Garney W. Understanding the Impact of Fibromyalgia on Men: Findings From a Nationwide Survey. Am J Mens Health. 2018;12(4):952-60.
10. Häuser W, Brähler E, Ablin J, Wolfe F. 2016 modified American College of Rheumatology fibromyalgia criteria, ACTTION-APS Pain Taxonomy criteria and the prevalence of fibromyalgia. Arthritis Care Res (Hoboken). 2020; apr 5.
11. Jones GT, Atzeni F, Beasley M, Flüß E, Sarzi‐Puttini P, Macfarlane GJ. The Prevalence of Fibromyalgia in the General Population: A Comparison of the American College of Rheumatology 1990, 2010, and Modified 2010 Classification Criteria. Arthritis Rheumatol. 2015;67(2):568-75.
13. http://andreasfysio.se/man-med-fibromyalgi/
14. Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, et al. The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. Arthritis Care Res (Hoboken). 2010;62(5):600-10.
15. Wolfe F, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RL, Mease PJ, et al. Comparison of Physician-Based and Patient-Based Criteria for the Diagnosis of Fibromyalgia: Fibromyalgia Diagnostic Criteria Comparison. Arthritis Care Res (Hoboken). 2016;68(5):652-9.
