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New surveys reveal striking differences between public perceptions and private realities of people with Fibromyalgia

Saturday 31 March 2012

 

From the American Chronic Pain Association:

 

American Chronic Pain AssociationNew Surveys Reveal Striking Differences Between Public Perceptions and Private Realities of People With Fibromyalgia

National findings suggest better understanding and support may empower people to seek help early for fibromyalgia symptoms

Rocklin, Calif. March 21, 2012 /PRNewswire/ — In a unique approach that compares the attitudes of people living with fibromyalgia with those of the general public, the American Chronic Pain Association (ACPA) in partnership with Forest Laboratories Inc. today released results from two new national surveys, revealing substantial differences between public perceptions and the private realities of fibromyalgia, a chronic pain condition that affects up to 12 million Americans.

The survey shows that people with fibromyalgia inaccurately believe the public views them negatively. Forty-one percent of the general public believes people with fibromyalgia are courageous, while only 17 percent of people who have the condition believe society actually views them this way.

“Imagine, for some people living with fibromyalgia, having to deal with a persistent pain condition while feeling isolated from society,” says Penney Cowan, founder and executive director of ACPA and someone who has lived with fibromyalgia. “These survey results show that some people with fibromyalgia have misperceptions about how society views them, and our hope is that they learn about these findings and feel empowered to speak openly about their experiences with this condition.”

The two surveys also reveal that while 92 percent of the general population has heard of fibromyalgia, many do not understand the challenges the condition may pose for those living with it. For example, what some may consider simple everyday tasks, such as driving, sitting for long periods and doing household chores are, in reality, difficult for people living with fibromyalgia. In fact, 67 percent of people with fibromyalgia symptoms report they are not satisfied with their ability to carry out their normal routines, yet more than half delay seeking help from a healthcare professional.

“Many people in the general population have misperceptions about the impact fibromyalgia can have on people’s lives,” says Cowan. “This lack of understanding may lead people with fibromyalgia to delay seeking help and receiving an accurate diagnosis. However, the good news is that people with fibromyalgia, along with their healthcare provider, can learn to manage their condition.”

Importance of Early Diagnosis

An early fibromyalgia diagnosis is critical, but many with symptoms do not seek help soon enough. According to the survey, among people with fibromyalgia, most (77 percent) waited up to three years before seeking help from a healthcare professional. Remarkably, 70 percent of people with fibromyalgia reported that they hesitated to visit a healthcare professional because they thought their symptoms would go away. Yet once they did seek help, 55 percent said talking with their healthcare provider was a good decision.

Fibromyalgia impacts simple everyday activities

  • Seventy-one percent of people experiencing fibromyalgia symptoms had difficulty vacuuming, doing yard work or cleaning their apartment or house.
  • More than half (58 percent) had difficulty lifting and carrying a bagful of groceries or taking out the trash.

Romantic intimacy suffers as a result of fibromyalgia, especially among men

  • Sixty-four percent of people with fibromyalgia in a relationship reported that they experienced difficulty being intimate with their partner.
  • Among all people with fibromyalgia surveyed, more men (56 percent) than women (48 percent) said it has become more difficult to be physically intimate with their partner.
  • One in four men (25 percent) and 15 percent of women with fibromyalgia reported that when they were experiencing symptoms, they could no longer sleep in the same bed as their partner.

Fibromyalgia may contribute to decreased income, missed work, increased sick time and missed career opportunities

  • Seventy percent of people with fibromyalgia responded that they had difficulty completing tasks at work, and 61 percent admitted their work life/career became more difficult because of their fibromyalgia symptoms.
  • Sixty percent of people with fibromyalgia responded that they had to take more sick/personal days, and more than half (56 percent) reported their personal income had decreased because of their fibromyalgia symptoms.

“As a doctor who has been treating fibromyalgia for several years, I’m encouraged by surveys like these that increase the conversation about the condition,” said Dr. Beth Hodges, a physician with Hodges Family Practice in Asheboro, N.C. “I urge people who think they may have fibromyalgia to seek help from their healthcare provider and maintain an open dialogue,” she continued. “There are FDA-approved treatment options specifically for the management of fibromyalgia. The sooner people with fibromyalgia are diagnosed, the sooner they can begin an effective management plan.”

About Fibromyalgia

Fibromyalgia is a condition marked by chronic, widespread pain and tenderness, decreased physical function, fatigue and difficulty sleeping. It affects up to 12 million Americans, with an estimated 70 percent undiagnosed. It mostly affects women, but can impact men as well.

About the Surveys

The surveys, known as “Two Takes on Fibro: Public Perceptions and Private Realities,” were designed to gather and better understand perspectives about fibromyalgia among people with the condition and the general public, and to understand the level of impact fibromyalgia has on a person’s life, including daily physical function, relationships, intimacy and workplace productivity. The survey results aim to help bridge the perception gap between the public and those who live with fibromyalgia, improve awareness of the condition, promote a compassionate dialogue, and help affect a better system of support for people with fibromyalgia.

Research for “Two Takes on Fibro” was conducted by StrategyOne and fielded by the Harris Interactive Service Bureau; 1,215 men and women diagnosed with fibromyalgia and 1,022 adults from the general population were questioned. The survey of people with fibromyalgia was fielded between October 10, 2011 and October 21, 2011 and consisted of 58 questions. The general population survey was fielded between October 10, 2011 and October 17, 2011 and consisted of 37 questions.

For more information about fibromyalgia visit www.TheACPA.org and www.FibroTogether.com.

About the American Chronic Pain Association (ACPA)

The American Chronic Pain Association has offered support and information for people with chronic pain since 1980. Its mission is to facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain and to raise awareness among the healthcare community, policy makers and the public at large about issues associated with living with chronic pain.

ACPA support groups meet in the United States, Canada, the United Kingdom and in many other nations around the world. In addition, the ACPA provides a wealth of materials, including self-help manuals, videos, workbooks and other resources that can help people with pain and their families. These materials, created by people with pain for people with pain, offer unique insight into the reality of chronic pain and its management and hope for improving quality of life for those who live with pain daily.

Learn more about the American Chronic Pain Association and Partners for Understanding Pain at www.TheACPA.org.

About Forest Laboratories, Inc.

Forest Laboratories (NYSE: FRX) is a U.S.-based pharmaceutical company with a long track record of building partnerships and developing and marketing products that make a positive difference in people’s lives. In addition to its well-established franchises in therapeutic areas of the central nervous and cardiovascular systems, Forest’s current pipeline includes product candidates in all stages of development and across a wide range of therapeutic areas. The Company is headquartered in New York.

 

The above originally appeared here.

 


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