Fibromyalgia Patient Insights
In late October 2005, the National Fibromyalgia Association (NFA), a non-profit patient advocacy organization, posted an internet survey developed by a distinguished task force of experts who were highly experienced in the field of fibromyalgia research.1 Over a three day period, the lengthy questionnaire was completed by 2,596 people with fibromyalgia and provided responders’ opinions on a wide range of issues and resulted in the collection of over 900 data end points. The NFA’s survey is thought to be the largest fibromyalgia patient internet survey ever completed, and the vital demographic data and insights into topics such as the patient’s perception of aggravating factors, frequency and intensity of symptoms, and the effectiveness of specific interventions, will be crucial in understanding ways to better serve this patient population.
Since its inception in 1997, the National Fibromyalgia Association has evolved—from a group of very ill fibromyalgia patients who came together in an effort to bring awareness to the disorder and its life altering consequences—into an internationally recognized advocacy organization that annually provides assistance to an estimated 1.2 million people with fibromyalgia. Unlike other patient groups, the NFA’s original Board of Directors believed that in order to pursue its mission to improve the quality of life for people with fibromyalgia, it was imperative that the efforts of the association be driven by a blend of the patients’ insights and beliefs and the medical communities’ scientific experience and credibility. By combining the two communities’ expertise, the NFA has been able to accelerate the process of developing and implementing a comprehensive assortment of programs designed to assist and support patients, expand continuing medical education, increase general awareness, and further research. Crucial to this success was the willingness of the fibromyalgia scientific community to support NFA’s work by giving generously of their time and knowledge. NFA has been able to give hope to millions of people suffering from fibromyalgia who had, for many years, experienced negativity and skepticism from many health care providers, as well as the anguish of self doubt and frustration that comes from living in constant pain and having society judge one’s condition as “controversial” and “suspect.”
Today, almost ten years later, those joint efforts have had a huge impact on the negative perceptions that fibromyalgia patients once endured and have helped to reduce the stigma that patients experience in having an “invisible illness.” The extensive research that has recently been completed and presented in numerous scientific publications, the advances made by Functional MRI (fMRI) technology, and fibromyalgia patients’ persistence—have all helped to change both the medical community and the general public’s perceptions about fibromyalga.
Fibromyalgia Patients’ Experience
People who are in constant, excruciating pain are not always the most pleasant people to be around. One would expect that those with fibromyalgia who are living with aching, stabbing, burning, pulsing, numbing pain all over their body—without the promise of relief in the near future—might exhibit behavior that is viewed by others as whinny and negative. From a logical standpoint, it is understandable that pain will cause one to be angry, frustrated, fearful, emotional, and demanding, but when society questions the cause or even the very existence of that pain, and blames the person’s experience on their imagination, hyper sensitivity, or inability to cope with life, it becomes imperative that attitudes must change through the process of education. Often, people living with the pain of fibromyalgia become reclusive and depressed and avoiding the scrutiny that exists about their condition. They turn to the internet for the newest information on what might help them with their challenges. In fact, the interest in internet information about fibromyalgia has lead to an incredible increase in the number of fibromyalgia sites. In 2003 when researchers at Rush-Presbyterian-St. Luke’s Medical Center reviewed the fibromyalgia web sites on Yahoo and Google they found over 900,000 individual sites. The web is a resource for patients and a way to connect with the fibromyalgia community quickly and easily.
Need for Studies
Over the past five years, attitudes about fibromyalgia have begun to improve and a general interest in finding ways to better understand the people who are living with the disorder is emerging. Healthcare providers have recognized that these patients aren’t “going away” and they need to understand the patients’ perceptions of the illness in order to better appreciate what they can do to help their patients. As the NFA was asked about the fibromyalgia patients’ beliefs and expectations—and as these topics became items of frequent discussion in the media—it became apparent that anecdotal information was inadequate and what was needed, in the absence of formal epidemiological studies, was statistical information from the patients themselves. As a result, the NFA—together with their Medical Advisory Board, researchers, and patient advocates—developed an internet- based patient survey.