"NFA Launches 'Facing Fibromyalgia, Finding Hope,' a New Fibromyalgia Education Campaign"
New Nationwide Surveys Demonstrate Need for More Education, Resources for “Invisible” Pain Condition Affecting More Than Six Million Americans
Contact: Corin Walson
August 7, 2007 (Anaheim, CA) The National Fibromyalgia Association (NFA) today announced the launch of a new national educational campaign aimed at increasing understanding of fibromyalgia among patients, healthcare providers and the public. Fibromyalgia is the most common widespread, chronic pain condition in the United States, characterized by a unique kind of persistent pain and usually accompanied by poor sleep, stiffness and fatigue. The campaign was driven in part by the results of two new fibromyalgia surveys one of the general public and one of physicians underscoring the need for greater awareness of the debilitating condition.
The multi-faceted campaign includes patient education materials, resources and tools, answering the call from more than eight in 10 physicians surveyed (82%) who agree there is a need for more patient-oriented information on fibromyalgia. The campaign also features a partnership with internationally renowned physician and author Dr. Pamela Peeke, who has treated people with fibromyalgia for more than 20 years. A nationally-broadcast public service announcement featuring patient stories and an interactive Web site http://www.fibrohope.org/ are also available. The campaign is supported through a sponsorship by Pfizer.
“Fibromyalgia is a major public health issue that deserves increased attention and understanding, yet it’s very much a misunderstood and invisible illness,” said Lynne Matallana, founder and president of the NFA, and fibromyalgia sufferer. “While the pain of fibromyalgia can be chronic, people with the condition usually don’t look sick, so it can be difficult for their families, friends, colleagues and healthcare providers to understand the serious impact of the condition.”
“The chronic pain of fibromyalgia can be frustrating for patients and healthcare providers alike at times it’s like grabbing fog and this can lead to a communication gap,” said Pamela Peeke, M.D., MPH, assistant clinical professor of medicine at the University of Maryland School of Medicine. “An empathetic and knowledgeable healthcare provider who will work in partnership with an educated patient is a critical component of managing fibromyalgia.”
Under Recognized and Misunderstood
The new public awareness survey shows a significant lack of understanding about fibromyalgia: nearly half of the general public (45%) has never heard of fibromyalgia and many people who are knowledgeable about the disorder incorrectly believe that nothing can be done to manage it.
Approximately one in three survey respondents who are knowledgeable about fibromyalgia incorrectly classify the condition as an autoimmune disease (32%) or a type of arthritis (28%). In fact, fibromyalgia is a chronic pain condition thought to result from neurological changes in how patients perceive pain, specifically a heightened sensitivity to stimuli that are not normally painful.
Significant Emotional and Financial Impact on Patients
A persistent and debilitating disorder, fibromyalgia can have a devastating effect on all aspects of a person’s life. Survey results show that respondents perceive fibromyalgia as having a strong or very strong impact on patients’ ability to work (62%), ability to care for family (54%), and personal relationships (47%). In the survey of physicians, doctors rank the ability to work as the area of a patient’s life most impacted by fibromyalgia, followed by personal relationships and ability to care for family.
Diagnosis Elusive and Lengthy
According to the physician survey, many healthcare providers lack confidence in diagnosing fibromyalgia and are reluctant to diagnose patients with the condition. For most specialties surveyed, less than one-third of physicians were extremely/very confident in their ability to diagnose the disorder (6% of OB/GYNs; 23% of psychiatrists; 27% of neurologists; 28% of primary care physicians). In contrast, rheumatologists are the most confident in their ability to diagnose (87% extremely to very confident).
In addition, more than half of physicians surveyed (60%) agree they worry about labeling patients as having fibromyalgia. Nearly half (48%) report they are reluctant to diagnose a patient with the condition.
This reluctance may lead to delayed diagnosis the general public survey reveals that more than two in five (42%) respondents diagnosed with fibromyalgia by a healthcare provider report waiting two or more years for the diagnosis, including 22 percent who waited five years or more.
“People with a diagnosis of fibromyalgia have struggled with their symptoms for many years,” said Dr. I. Jon Russell, associate professor of medicine in the division of clinical immunology and rheumatology and director of the university clinical research center, University of Texas Health Science Center. “What they're looking for is not only information about the disorder, but also an understanding of their struggle. This understanding should come in the form of tangible compassion, with a medical care plan that offers realistic hope for improvement.”
Prognosis Has Never Been Better
Once patients are diagnosed with fibromyalgia, they can work in partnership with their physicians to manage the condition through individualized therapeutic strategies, which may include lifestyle measures (such as exercise, nutrition and relaxation techniques) and behavioral support, as well as medication. There is a wealth of fibromyalgia research being conducted in the US and globally.
For additional information on fibromyalgia, please visit http://www.fibrohope.org/.
About the Surveys
The general public awareness survey was conducted by Schulman, Ronca and Bucuvalas, Inc. using a random-digit dial (RDD) sample of 1,606 adults over the age of 18, living in the U.S. The survey, which included some patients diagnosed with fibromyalgia by healthcare providers, took place from May 22 to June 4, 2007. The maximum expected sample error for a simple random sample of this size is plus or minus 2.5 percentage points. The survey was commissioned on behalf of the National Fibromyalgia Association.
The physician survey, designed to understand the perceptions and attitudes doctors have towards fibromyalgia, was conducted by Penn, Schoen, & Berland Associates, LLC. Interviews with 557 physicians (100 rheumatologists, 102 neurologists, 103 OB/GYNs, 100 psychiatrists, 101 primary care physicians, and 51 anesthesiologists with a pain management sub-specialty) were conducted on the Internet from March 30 to April 9, 2007. The survey was commissioned on behalf of the National Fibromyalgia Association.
Fibromyalgia is a chronic pain disorder characterized by widespread musculoskeletal aches, pain, and stiffness, soft tissue tenderness, fatigue, and sleep disturbances. Patients experience a range of symptoms of varying intensities that may wax and wane over time. Fibromyalgia is thought to result from neurological changes in how patients perceive pain. Because of its debilitating nature, fibromyalgia has a serious impact on patients’ families, friends and employers, and society.
About the National Fibromyalgia Association
The National Fibromyalgia Association is a non-profit 501(c)(3) organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia by increasing the awareness of the public, media, government and medical communities. The NFA publishes a quarterly magazine, Fibromyalgia AWARE, and hosts an award-winning Web site at www.FMaware.org.
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