Spotlight on: National Fibromyalgia Association

Lynne Matallana had experienced chronic pain almost her entire life, and when she was in her thirties, she underwent surgery for fertility problems. Immediately following surgery, she began to experience a cornucopia of odd symptoms that would not disappear. Several years passed, and after seeing 37 doctors, she finally heard the word “fibromyalgia.”

“At the time I had a PR and advertising firm,” says Matallana, “and I was thinking that we really needed some awareness about this condition. There were probably a lot of other people out there who were just like me.”

But this was 1997, and the internet was still pretty limited. Social media didn’t exist. “You could post information and write to people back and forth, but it was very primitive,” says Matallana. “I connected with some women who had fibromyalgia, and we began talking.”

One of the women was Karen Lee Richards, who had also experienced the same drawn-out journey of seeing multiple doctors until finally getting a diagnosis. It became clear to both women that many people with fibromyalgia were being dismissed by the medical community and not receiving the medical care and support they needed. They began sharing ideas about how they could assist others with fibromyalgia and eventually started meeting at Matallana’s home, along with five other women.

"We called ourselves 'the pillow posse' because we were all propped up on pillows due to pain,” Matallana says.

Feeling that there was a lack of reliable information and public awareness, and limited patient support for individuals with fibromyalgia, Matallana and Richards cofounded what would eventually become the National Fibromyalgia Association (NFA). At the time of the launch, there were only seven members, and to raise awareness, they decided to hold a national conference. “I don’t know what made me think that I could do this, but we invited 30 of the top fibromyalgia and pain researchers from around the world and held it at a hotel at Universal Studios in Los Angeles,” says Matallana. “We ended up with over 600 fibromyalgia patients attending and more than 275 providers. They did continuing medical education with us, and we had a partnership with Cedars-Sinai Medical Center.”

It was the first time that people had ever come together at that level for fibromyalgia awareness, and it put the National Fibromyalgia Association on the map. “I think the public realized that I was serious about building an organization that was going to spread awareness and help people,” she says. “And now we just celebrated our 28th anniversary.”

The National Fibromyalgia Association’s mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia. It does this through building awareness, educating healthcare professionals, creating a supportive community for patients, and advocacy.

Other goals include increasing international awareness and understanding of this chronic pain disorder, hosting continuing medical education programs and conferences for the medical community, and facilitating and implementing clinical research. In addition, the NFA plays a role in the development of new treatments — including medications, medical devices, and self-care — and builds collaboration between patients, healthcare providers, and scientific communities.

“It’s 28 years and we are still fighting for the same things we started out doing — removing the stigma attached to this disease and improving quality of life,” says Matallana.

The National Fibromyalgia Association is a comprehensive resource for people with fibromyalgia. It offers information on a wide variety of topics, including fibromyalgia diagnosis and treatment. It also provides an extensive resource list (including cost-saving programs and vetted products), a video series, and a free monthly newsletter with news, events, and research opportunities.

Although it doesn’t sponsor its own support groups, the NFA does provide assistance to local groups. It tries to answer email from anyone who has a question or needs information regarding any aspect of fibromyalgia.

As part of its awareness initiatives, the NFA established and coordinates the annual Fibromyalgia Awareness Day. This international program promotes awareness and understanding among both the general public and healthcare professionals. It is held every year on May 12 and is also used by local groups to get media coverage of local events and raise awareness of activities being held by local support groups.

Sometimes it can be difficult to find a provider who is knowledgeable about fibromyalgia, but the NFA provides a list of fibromyalgia-friendly practitioners in various states. These providers are often recommended by other medical professionals and people with fibromyalgia.

Research is a vital part of fibromyalgia care, to gain a better understanding of the disease and its causes as well as discover new and effective treatments. The NFA has played a role in helping to facilitate research, and according to Matallana, it has been part of about 18 projects over the past year and a half. These include evaluating CBD as a substitute for opioids and the economic impact of fibromyalgia.

The NFA’s main events are the annual Fibromyalgia Awareness Day campaign as well as activities geared toward raising awareness. “We did medical conferences for about 20 years, but it’s very expensive to hold them, and we just don’t have that kind of funding anymore,” says Matallana. “So now we are using the internet.”

More than 350,000 people have visited the NFA’s website this year, about 25 percent of whom were outside of the United States, says Matallana. “People know that the information they receive from the NFA is reliable and based in science, and we vet anything that’s put on the website,” she says.

The NFA has also started producing webinars, which are interactive and allow viewers to ask questions. The webinars are recorded for anyone to view at a later date.

“I’ve been doing this for 28 years — basically as a volunteer — and it has been a part of my life every day, along with others who’ve worked with me,” says Matallana. “We continue to keep the continuity of the efforts we have made during the past three decades, and we continue to fight for the fibromyalgia patient.”

Matallana is confident that others will take up the torch with the NFA’s mission when she is ready to step down. “It is important to have a resource that has the credibility that the National Fibromyalgia Association has in representing these people who oftentimes feel forgotten.”