Fibromyalgia is characterized by widespread muscle tenderness and pain, fatigue, and sleep problems. The cause is unclear, but abnormalities in the way the body responds to and processes pain may play a role.
An online survey, completed by 2,559 people diagnosed with fibromyalgia and 459 people with undiagnosed chronic pain conditions, suggests chronic pain causes significant changes in the way people live their lives.
92% say the condition has had a major effect on life decisions, including whether to remain in a relationship, start a new one, or change jobs. Ninety-five percent of the 650 respondents with children under 18 say their pain affects parenting duties, making it difficult to manage their kids’ schedules and enjoy their kids’ milestones. They also say the illness makes it more difficult to manage the household.
Less specifically, 68% say their pain limits their ability to care for their family.
98% of respondents say they have compensated for or attempted to compensate for their pain by changing their daily routine to make life easier or more bearable.
The three top concerns of the 450 people who said the disorder affected their decision to have children were: 62% worried about caring for a child, 53% wondered about their ability to go through childbirth, and 49% had fears about loss of more sleep after having a baby.
75% had visited a health care provider about their chronic pain because they felt they weren’t able to function at work to their best capacity.
Diagnosis Sometimes Takes Years
“It took two long, painful years and countless doctor visits before I was diagnosed with fibromyalgia, but our survey respondents had an even lengthier process -- their average time to receive a diagnosis was three years,” Lynne Matallana, MS, president and founder of the NFA, says in a news release.
She says her diagnosis has allowed her to work toward managing her pain more effectively, and that researchers hope that enhanced awareness and education will make it easier for people in the future.
Micke Brown, RN, of the American Pain Foundation, says in the news release that she has witnessed first-hand through her clinical work the impact that fibromyalgia and chronic pain conditions have on everyday activities that others take for granted, “such as holding your child, walking your dog, or cooking a family meal.”
Greater Awareness of Fibromyalgia
Brown, past president for the American Society for Pain Management Nursing, says she believes a greater awareness of the problems caused by fibromyalgia “will empower others to advocate for their health, talk frankly with their health care providers, and speak out about their right to receive timely and appropriate pain care.”
The survey was conducted by Synovate Healthcare in March 2011 and developed by the National Fibromyalgia Association, the American Pain Foundation, and Pfizer Inc. Most of the survey participants were female (91%) and the average age was 51.