Fibromyalgia & Chronic Pain LIFE Spring 2015, Issue 11 | Page 26

National Fibromyalgia & Chronic Pain Association/
Oregon Health & Sciences University
Survey of Fibromyalgia Symptoms Other than Pain

For two weeks in November 2013, NFMPCA members responded to a questionnaire designed by
researcher and professor Dr. Robert Bennett of
Oregon Health & Sciences University. 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 survey results were presented
by Jan Chambers at the FDA Fibromyalgia Public
Meeting on Patient-Focused Drug Development on
March 26, 2014 (rescheduled from December 20,
2013), and in the public comments docket following the meeting. This survey provided a lot of new
and important information regarding the suffering
endured by people with fibromyalgia.
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.
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 were developed for use in surveys of this kind that enables an investigator

26  Fibromyalgia & Chronic Pain

Life

Sp r i n g 2 0 1 5

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.
Most of the participants completing the survey were
middle-aged with a mean age of 53 years. The age distribution can be seen in the accompanying Age Distribution Table. There was a normal distribution of ages
ranging from the late teens to 80-year-olds.