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.”
A young rheumatologist explained to her that an estimated 10 million people in the United States had this condition.
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There wasn’t much in the way of effective treatment, and Matallana spent two years in bed dealing with pain and fatigue.
“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.”
