In preparation for the Food and Drug Administration's Public Fibromyalgia Patient-Focused Meeting December 10, 2013 (rescheduled to March 26, 2014), the National Fibromyalgia & Chronic Pain Association in partnership with Dr. Robert Bennett, Professor of Medicine at Oregon Health & Science University, published a nationwide survey to capture important scientific information to report at the FDA meeting. Robust community participation in the survey during a short time period indicated strong support for more research on fibromyalgia. Dr. Bennett prepared a three-part series of the results for the NFMCPA for education to its constituents and the public. These valuable insights will also be used in further research at OHSU as well as being submitted for publication in a peer-reviewed professional journal. This is Part 1 of that 3-part series.
During a couple of weeks at the end of November 2013, NFMPCA members looked at a questionnaire designed by Dr. Rob Bennett. The intent of this questionnaire was to provide information to the Food and Drug Administration (FDA) on common symptoms encountered by fibromyalgia patients, other than pain. This information was to be presented by Jan Chambers at an FDA meeting in December 2013, but due to bad weather the meeting was canceled and was rescheduled for March 26, 2014. This survey provided us with a lot of new and important information regarding the suffering endured by fibromyalgia patients.
To start with we will examine the basic demographic details. As noted, 3,201 NFMPCA members looked at the questionnaire. It was a rather daunting set of questions which would take 20 to 30 minutes to complete, thus it was not surprising that just over 1,000 would-be participants decided to go no further, or started the survey and gave up partway through. The good news is that 2,187 completed the survey (see table below):
The majority of those surveyed said they had a diagnosis of fibromyalgia (i.e., only 19 patients reported another chronic pain condition as their primary problem).
Recently, criteria have been developed for the use in surveys of this kind that enables an investigator to get a good estimate as to who in fact does have fibromyalgia, and who does not (using the ACR 2010 Fibromyalgia Diagnostic Criteria). Of the original 2,168 patients who reported being diagnosed with fibromyalgia, responses from 1,492 (i.e., 69%) survey participants indicate they have fibromyalgia according to the 2010 ACR criteria. Interestingly, 10 of the 19 patients who did not report a diagnosis of fibromyalgia had a positive diagnosis according to the 2010 ACR criteria.
As many people with fibromyalgia symptoms are only too aware, getting a definitive diagnosis of fibromyalgia can be time-consuming and frustrating. One of the questions we asked in the survey was: "How many healthcare providers did you see before getting fibromyalgia?" Approximately one-third of the respondents had to see more than 5 healthcare professionals before getting a definite diagnosis of fibromyalgia.