Men with fibromyalgia

You can find the video after the text

The pain disease fibromyalgia is seen by many as a woman’s disease since an overwhelming majority of those diagnosed have been women. But men also get fibromyalgia and with the newer diagnostic criteria, there is a significantly higher proportion of men who have fibromyalgia than before. The video will be about this and I have also looked at whether research shows that fibromyalgia is different in men compared to women.

My name is Andreas Persson and I am a physiotherapist and specialist in pain and pain rehabilitation. What I say in the film can be seen in text form on my website along with references to the scientific literature it is based on. The link is in the description. 

Fibromyalgia is a disease in which the person affected has pain in a large part of the body or several parts of the body. Other symptoms, such as insomnia, fatigue, numbness, and difficulty concentrating, and memory problems are also common. (1) Check out my video on the nine most common symptoms of fibromyalgia for more information.

For long it has been told that fibromyalgia mainly affects women and that it is very rare for men to be affected.(1) This has led to the disease being seen as a woman’s disease.(2) The diagnostic criteria for fibromyalgia have changed somewhat since 1990 when the first generally accepted criteria came. The criteria from 1990 include testing if it hurts when pressing on 18 points in the body.(3) 

Newer criteria for fibromyalgia, both those that came in 2010 and the most recent ones that came in 2016, do not include testing of the 18 points.(4,5) Instead, they are based on how large parts of the affecteds body are in pain and how severe the other associated symptoms are, such as sleep disturbance, fatigue, as well as memory and concentration difficulties.

If you want more information about the different diagnostic criteria, I have made three short films about them. The first is about investigating if there are other diseases. The second video is about the diagnostic criteria from 2016, which you can test on your own if you think you have fibromyalgia, and the third video is about the diagnostic criteria from 1990 with the 18 test points.

When it is said that fibromyalgia mainly affects women, it is based on the old criteria from 1990.(1) In the classic American study that is often referred to when it is claimed that fibromyalgia is present in 2% of all adults, the diagnostic criteria from 1990 were used.(6) The study showed that of those who had fibromyalgia, 91% were women and only 9% men. It is this data that is behind the repeated description in the research literature that fibromyalgia mainly affects women.(1)

But the criteria from 1990 were never intended for diagnosing fibromyalgia in healthcare. The aim was instead to create a uniform group of those with fibromyalgia for comparison in research studies.(7)  The lead author of the 1990 criteria who also helped create the new criteria from 2016 has even written an article entitled ”Stop using the American College of Rheumatology criteria in the clinic”.(7)  To diagnose fibromyalgia in healthcare, the main author of both the criteria from 1990 and 2016 says that one should use the criteria from 2016. Then we come to the question, what proportion according to the new criteria are men?

This was tested in a German study published in 2020 and it shows that approximately 1/3, that is 33% of those who meet the criteria for fibromyalgia are men.(8) Another study conducted in Scotland showed that the proportion of men was 40% according to diagnostic criteria where the test points were not used.(9) In the classic study which showed that only 9% of those with fibromyalgia were men, they also looked at how common it was with generalized pain in the population. The definition of generalized pain was that you have pain in both the right and left side of the body, that you have pain both above and below the waist and that you have pain in the back, neck, or chest. – So it was like the 1990 criteria minus the 18 test points. …. Here, too, it could be seen that about 1/3 of those who had generalized pain were men.(6)

So based on recent studies, it can be stated that fibromyalgia is not a woman’s disease, even though the majority of those affected are women. A large proportion of those affected, approximately between 30-40% are men.

Several studies from different countries show that most people who have fibromyalgia do not know that they have the disease. They have received the diagnosis or explanation for their pain and their other symptoms. I intend to make a separate video on the subject, but I still want to mention it briefly here. A study from Canada showed that only 28% of those who meet the diagnostic criteria had received the diagnosis with the proper explanation of the symptoms.(10) Another study from the USA shows that only 17%, that is about one-sixth of those who meet the criteria for fibromyalgia had received the diagnosis and explanation.(11)

I believe that fibromyalgia is significantly underdiagnosed worldwide. And I think it’s more underdiagnosed among men than women. In the study from Canada where only 28% of those with fibromyalgia had been diagnosed, all who had been diagnosed were women. Of those who had not been diagnosed, about 20% were men, and this was according to the old diagnostic criteria, which misses most men with fibromyalgia. (10)

One of the reasons why men are underdiagnosed more than women is probably that most doctors see fibromyalgia as a woman’s disease and do not think about the diagnosis when they see a male patient with pain.(12)

Another reason why men’s fibromyalgia is likely to be more underdiagnosed than women’s is that men are less likely to seek medical attention for their symptoms.(13) In addition, I think it is more common for people with long-term pain to only seek care for the areas of the body that hurt the most.

I have experienced this many times. When I have asked a patient to make a pain drawing where the form says that they should fill in all areas that have hurt in the last month, they only fill in the area they are seeking care for, the area that hurts the most. If I start to suspect fibromyalgia, I usually give back the drawing and ask if no more area hurts. Which it often does. Healthcare professionals usually don’t ask if the patient is in pain elsewhere. And I think this tendency to seek care only for the most painful area is more common among men. At least that’s my experience.

Another reason why men, in particular, do not receive the diagnosis is that the diagnostic criteria from 1990 are most often used to determine whether a person has fibromyalgia. And the criteria from 1990, which should not be used to make a diagnosis, misses most men with fibromyalgia.(9)

So far, it can be stated that fibromyalgia is not just a woman’s disease. At least a third of those who have the disease are men. Fibromyalgia is underdiagnosed in both women and men. Most people who have the disease do not know about it. The disease is more underdiagnosed among men than women, partly because fibromyalgia is seen as a woman’s disease, but also because men do not seek care as often and they do not tell about all areas of the body that hurt, only the area that hurts the most. Another contributing factor is that the diagnostic criteria from 1990 are still the most widely used, which misses most men with fibromyalgia.(9)

Next, we are going to talk about is how fibromyalgia differs between women and men. It is already possible to conclude something based on what we have talked about. Women with fibromyalgia easier get pain in when the examiner presses at the 18 test points than men.(6)

This can be said based on that only 9% of those with fibromyalgia are men when using the diagnostic criteria from 1990 where it must hurt at least 11 of 18 test points, while 30-40% are men when using the newer criteria where the test points are not included.(6,9)

The 18 test points are not unique in that they are the only areas that are sore in those who have fibromyalgia. Men are probably less sensitive to pressure in general, everywhere in the body and not just on the points.

But what other differences are there? Unfortunately, there is quite a small amount of research on men in particular. Most studies done on fibromyalgia includes only women or use the criteria from 1990 which means that only a few participants are men. In the studies, the researchers rarely look at differences between men and women.

When I searched in PubMed with the keywords fibromyalgia and men, only two studies came up. Based on these studies, it was possible to find a few more, but it was difficult to find studies on only men with fibromyalgia and studies where the difference between women and men was studied. If you only search for the keyword fibromyalgia, there are about 8000 studies published. So given that 30-40% of those affected are men, it is remarkable that so few are focused on men.

Almost all the studies on men with fibromyalgia that I found were qualitative, which meant that they were interview studies with few participants. This meant that it was not possible to generalize the results to a larger group, that is, what is seen in the studies can’t be applied to men with fibromyalgia in general. So is there anything you can see from the scant research that exists besides the fact that men with fibromyalgia are less sensitive to pressure than women?

One thing research seems to suggest is that men with fibromyalgia are more likely to suffer from depression than women.

The risk of developing depression at some point in life is about 36% for women and 23% for men.(14) These are figures from Sweden and I think that the figures vary somewhat between different countries, but that women are usually more often depressed than men. The risk of developing depression for those with fibromyalgia is significantly higher than in the general population. A literature review published in 2012 showed that between 62-86% of those with fibromyalgia become depressed at some point in their lives.(15)

Normally, depression, as mentioned above is significantly more common among women than men, but a US survey involving 805 men with fibromyalgia reported depression as the most common symptom. In the study, as many as 97.9% of men reported that they were depressed.(2) The men with fibromyalgia who participated in the study had been diagnosed with fibromyalgia. There is research that shows that those with fibromyalgia who have gotten the diagnosis and through that an explanation to the symptoms feel better.(10) This indicates that even though, as the study showed, as many as 97.9% of men with fibromyalgia feel depressed, men who have not been diagnosed are probably even worse off.

A qualitative study describes that men with fibromyalgia can feel worse than women because they cannot use their bodies. After all, men are to a greater extent expected to be strong and able to do physical activities that women are unable to do.(12) But as said before, it is not reliable to draw such conclusions for the entire population of men with fibromyalgia, from small qualitative studies.

In summary, it can be said that fibromyalgia is not only a woman’s disease but 30-40% of those affected are men. Although fibromyalgia is underdiagnosed in both women and men, the disease seems to be more underdiagnosed in men. Men are not as sore in the body when tested as women, but seem to be more depressed. There are few studies on men with fibromyalgia, which means that there may well be other differences that have not yet been discovered. But before those studies are done, it must be assumed that fibromyalgia in men manifests itself as fibromyalgia in women in addition to what I have just said about the tenderness in the body and the occurrence of depression.

If you liked this video, subscribe to my youtube channel and check out my other movies about fibromyalgia and chronic pain.

References

1. Hawkins R. Fibromyalgia: A Clinical Update. J Am Osteopath Assoc. 2013;113(9):680-9. 

2. 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. 

3. 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. 

4. Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RS, et al. J Rheumatol. 2011;38(6);1113-22.

5. 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

6. 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. 

7. Wolfe F. Stop using the American College of Rheumatology criteria in the clinic. J Rheumatol. 2003;30(8):1671-2. 

8. 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. 

9. 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.

10. White KP, Nielson WR, Harth M, Ostbye T, Speechley M. Does the label ”fibromyalgia” alter health status, function, and health service utilization? A prospective, within-group comparison in a community cohort of adults with chronic widespread pain.Arthritis Rheum. 2002;47(3):260-5. 

11. Vincent A, Lahr BD, Wolfe F, Clauw DJ, Whipple MO, Oh TH, et al. Prevalence of Fibromyalgia: A Population-Based Study in Olmsted County, Minnesota, Utilizing the Rochester Epidemiology Project: Estimation of the Prevalence of FM in a Defined Population. Arthritis Care Res (Hoboken). 2013;65(5):786-92. 

12. Sallinen M, Mengshoel AM, Solbrække KN. “I can’t have it; I am a man. A young man!” – men, fibromyalgia and masculinity in a Nordic context. Int J Qual Stud Health Well-being. 2019;14(1):1676974. 

13. Paulson M, Norberg A, Danielson E. Men living with fibromyalgia-type pain: experiences as patients in the Swedish health care system. J Adv Nurs. 2002;40(1):87-95. 

14. Socialstyrelsen. Tillståndet och utvecklingen inom hälso- och sjukvård samt tandvård. Lägesrapport 2016. 

15.  Alciati A, Sgiarovello P, Atzeni F, Sarzi-Puttini P. Psychiatric problems in fibromyalgia: clinical and neurobiological links between mood disorders and fibromyalgia. Reumatismo. 2012. 28;64(4):268-74. 

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