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11 Articles in Volume 7, Issue #4
Cervical-Medullary Meningioma
CES in the Treatment of Depression
Deep Penetration Therapeutic Laser
Fibromyalgia Patient Insights
Invoking the Placebo Effect
Multidimensional Ultrasonography
Paradigm Shift in Cancer Pain Management
Prolotherapy for Low Back Pain
Sedation Levels for Intraspinal Injections
Self-Protection Against “Off-label” Lawsuits
Viewpoint: Methadone Successes and Cautions

Fibromyalgia Patient Insights

The National Fibromyalgia Association’s patient internet survey has helped identify issues for future research and provided health care providers with insights for improved treatment options for patients living with fibromyalgia.

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.

NFA Background

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.

Table 1. Demographics of survey responders
  • Average age of responder 47.3 years
  • Average height 5 foot 3.9 inches
  • Average weight 179.3 pounds
  • Household income under $30,000 = 22.4%
  • Household income over $70,000 = 27.0%
Table 2. Survey results: Symptoms
  • Most commonly reported symptom = low back pain
  • Most extreme symptom = morning stiffness
  • Most common exacerbating event = mental stressors
  • Highest rated symptoms (Scale of 0-10) = morning
  • stiffness, fatigue, poor sleep and pain (in descending order)

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.

Table 3. Survey results: Health Care
  • Majority of responders (44%) see a health care provider 1-4 times a year
  • Over a quarter of the responders had visited an
  • emergency room 1-4 times in the last year
  • 42.4% of the responders were diagnosed by a
  • rheumatologists
  • 27.8% of the responders felt that their health care provider did not view FM as a legitimate disorder
  • 31.39 % spend over $100 on seeing a health care
  • professional
  • 47.31% spend over $100 on pharmaceutical drugs
  • 22.57% spend over $100 on OTC products
  • 27.04% spend over $100 on alternative modalities
Table 4. Survey results: Health Care
  • Medications reported to be most helpful: hydrocodone preparations, aprazolam, oxycodone preparations,
  • zolpidem, clonazepam
  • Medications reported to be used on a continuing basis: hydrocodone preparations, ibuprofen, clonazepam,
  • acetaminophen, trazodone, gabapentin, zolpidem
  • Most commonly used interventions = rest, heat,
  • distraction
  • Most effective interventions: sleep medications, pain medications, rest, heat, antidepressants

Patient Response to Online Survey

When the NFA’s internet survey was placed on its web site and notices were sent out to the fibromyalgia community asking them to take part in a study that was going to allow them to help explain what their experiences have been and what they feel would be important for the medical community to know, the response was extraordinary. Many of the participants even wrote to the NFA asking how else they could help. An example:

“Even though I have fibromyalgia and have to live with pain, I want the researchers to know that I hate feeling abnormal. If I had cancer pain or post surgical pain it would be real to them. Just because we haven’t found out exactly what is causing my pain, that doesn’t mean it isn’t real. That doesn’t mean that it is psychological. I hope that they will find value in the results of this survey and that we can help provide insights into this complex disorder that will give the health care providers the ability and willingness to accept our situation and help us find a better quality of life.”

Survey Results

Statistical analysis of the survey data provided a wealth of new information, some of which is compiled and summarized in Tables 1 through 4. Among the most salient points were:

  1. The prescribing habits of health care providers vs. what the patients feel are effective treatments
  2. The significance of low back pain
  3. The intensity of their experience with stiffness
  4. The impact of obesity
  5. Responders’ perceptions of what causes an increase in their symptom severity
  6. Responders’ reported success with non-medicinal interventions
  7. Responders’ willingness to spend large amounts of money on OTC products, while also reporting that many of these products were not very effective
  8. More responders equated the onset of their symptoms to an emotional trauma or stressor, rather than a physical stressor
  9. Responder’s reported a high incidence of neurological complaints
  10. More than a quarter of the responders have never had children


The NFA survey resulted in a great deal of statistical data on the perceptions and experiences of those suffering with fibromyalgia and offered many insights that will be of benefit to clinicians treating this patient population. Although the survey team has already had several articles accepted as poster or plenary presentations at national conferences, there is extensive data that still needs to be analyzed and published. The research team has established guidelines for use of the data and is encouraging in terested parties to contact the National Fibromyalgia Association regarding the data’s availability. Collaboration is key and we encourage you to become a part of the process. n

Last updated on: February 21, 2011
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