A Long Slow Process

The newest data tells us that doctors are taking too long to diagnose fibromyalgia. A recent survey suggests that the reasons for the delayed diagnoses are many. Meanwhile, the very same survey suggests that fibromyalgia leads to missed workdays, loss of employment, and lost income.

The Fibromyalgia Global Impact Survey was undertaken by the European Network of Fibromyalgia Associations (ENFA). ENFA is a coalition of organizations dedicated to patient advocacy and partnered by Pfizer, Inc. The survey polled 1,622 doctors as well as 800 confirmed fibromyalgia patients from eight countries including South Korea, Mexico, the Netherlands, Spain, Italy, Germany, France, and the UK. For every country represented by the survey, there were 100 subjects with confirmed diagnoses for fibromyalgia, along with around 100 primary care doctors and another 100 specialists such as psychiatrists, pain specialists, neurologists, and rheumatologists.

On analyzing the results generated by the survey, the researchers discovered that there was a time lag between the time a patient reported fibromyalgia-suggestive symptoms to a physician and the attainment of a firm diagnosis. The delay was demonstrated to be anywhere from 1.9 to 2.7 years from the first visit until a positive diagnosis was obtained. In addition to the diagnostic delay, it was seen that between two to four doctors were required to end up at a confirmed diagnosis for fibromyalgia.

No Confidence

The researchers posit that one element causing the delay in diagnosis is the paucity of confidence felt by the doctors who must rule on the presence of the condition. Between 16% and 71% of the physicians reported they were either "not very" or "not at all" confident as regards their competence in differentiating symptoms as stemming from fibromyalgia. Another important factor for the delay in diagnosis related to insufficient physician education on the subject of fibromyalgia syndrome.

As for the patients, the results of the study indicated that patients don't see their physicians as soon as they experience symptoms, but rather wait from anywhere between 5 months to two years after the onset of fibromyalgia symptoms to see their doctors. Patients tend to think they can wait out the symptoms or cope without seeking treatment.

Missed Workdays

One interesting statistic generated by the survey is the fact that patients tend to experience between 6 to 11 fibromyalgia symptoms, among these sensitivity to touch, fatigue, sleep disturbances, and widespread pain. Twenty percent of the patient participants reported illness-related unemployment and around fifty percent reported missing at least 10 days of work during the previous year because of fibromyalgia.

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I think all Fibro patients have been through this same battle. My symptoms started becoming severe in 2001 (I had symptoms before that, but more mild). I finally went to my doc and explained all the crazy symptoms. OF COURSE, the first thing she did was put me on anti-depressants. I AM NOT DEPRESSED, or at least wasn't then. I went to several docs. all the tests to rule out MS, RA, Poly something or another, spondylosus(sp?)! you name it, i was tested for it. This went on for almost 12 years! I was finally dx'd by a Rheumatologist. With so much information on fibro, i don't understand why it is still taking so long to get dx'd. It is so stressful that i think the entire process of dx makes us sicker. Hugs and prayers to all fighting this fight that never seems to end.
It is SO frustrating! I am still waiting for a diagnosis, have been living with chronic pain and weird nerve episodes in my eyes and limbs for over 3 years now, been to one Rheumatologist and just recently a Neurologist. Tired of Doctors not really listening...it is so hard to describe everything that is going on, and it changes everyday. Still no answers...at least they have crossed off all other possiblities....I am being referred to another Rheumatologist in the near future...hopefully, he won't dismiss me with another , 'hum, I really don't know what to tell you'
It has taken 20 years to get a 'loose' diagnosis. Always put down to possible arthritis many tests for RA. Not sure if previous diagnosis og palindromic arthritis still stands or that I have both. But the more I read the more it checks out as fibromyalgia.