An often misdiagnosed, painful musculoskeletal condition, fibromyalgia affects about 6 million Americans from every age group, all races and genders. Because there is no definitive diagnostic test, diagnosis is based on the individual’s symptoms and a physical exam.
In 2010, the American Pain Foundation organized a nationwide effort to educate the pubic about fibromyalgia, in hopes that by empowering patients, families, the public and healthcare professionals with knowledge, they could advocate for those who suffer from the disease.
Karen Kiefer, RN, BAIS, staff nurse, interventional radiology/cardiac CT imaging at Overlook Medical Center, Summit, N.J., and Deana Luchs, MS, CCC-SLP, medical think-tank and parent advocacy coordinator, Comprehensive Autism Medical Assessment and Treatment Center in Warren, N.J., have served as APF Action Network co-leaders for New Jersey. In the role, they have implemented a statewide fibromyalgia awareness campaign by organizing the distribution of almost 9,000 toolkits in more than 50 towns and implementing four major awareness events in the state.
“Nurses understand the power of networking. We had many nurses who helped at our events and distributed toolkits at churches, community and pain centers, physician offices, hospitals and subacute settings,” Kiefer said.
Atlantic Health supported Kiefer’s efforts by sponsoring two daylong events and creating and distributing a systemwide postcard that served as an educational tool.
Commitment to the causeDeana Luchs
“Is Fibro the Cause? A Toolkit for People Living With Fibromyalgia,” is a free, 32-page booklet published by the APF that covers fibro basics; tips for finding experts and talking with a healthcare provider; easing depression and anxiety; first steps for coping; new directions in research and advocacy; common questions and answers; and resources. Also included is a worksheet to track symptoms and a self-assessment tool.
The awareness events covered all aspects of the condition, with participation from nurses, physicians, yoga therapists, acupuncturists, physiatrists, massage therapists and psychiatrists. A person with fibromyalgia for the past 30 years, Luchs organized an awareness event at the Franklin Township Library in Somerset, N.J. “We had an interactive evening, with a tai chi expert demonstrating specific moves; the yoga therapist demonstrating chair yoga positions and breathing techniques; and the acupuncturist showing the various needles she uses in therapy,” Luchs said. Luchs plans to continue to advocate for patients in pain, particularly for those who have autism and cannot speak for themselves.
Initially, the APF conducted the first phase of the campaign in Missouri in 2010. Then in 2011, the organization branched out to New Jersey, Georgia and Michigan.
“Through the efforts of the campaign, we’ve seen people who now can sit with their primary provider and talk intelligently about their symptoms, physicians who are more open to working with pain management specialists and nurses who are more willing to speak up for their patients who are in pain,” Kiefer said. “Actually, because they are right there with patients and because they are educated and willing to advocate for their patients, I think nurses are today’s leaders in pain management.”
For information about fibromyalgia and other disorders associated with pain, visit www.PainFoundation.org. To obtain a toolkit, contact [email protected]