Wednesday, July 28 2021 - 2:16 AM
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Living with Fibromyalgia

When the mysterious pain and debilitating fatigue plaguing a loved one is diagnosed as “fibromyalgia,” the first reaction is usually relief at finally having a name for the pain, followed by confusion as everyone scrambles to get information. What does a diagnosis of fibromyalgia mean? Is there hope that things will get better?

Filmmakers Daneen Akers and Stephen Eyer asked these questions when Daneen’s mother was diagnosed with fibromyalgia several years ago. After watching their family search for answers, they decided to make a film about their own understanding and hope journey. They interviewed doctors, experts, and, most importantly, Daneen’s mom. They also interviewed other fibromyalgia patients from diverse backgrounds. The patients share their own stories of learning to survive and even thrive with this illness.

A Film Is Made

The result of over two years of interviews and research, Living With Fibromyalgia is the film they wish their family could have watched together when they first heard the word “fibromyalgia.”

Akers and Eyer, who are married, were first introduced to fibromyalgia when Akers’ mother was diagnosed with it in 2001. Watching their family hunt for good information and struggle with a chronic illness’s implications convinced the couple to make a film to help others dealing with the same situation. The filmmakers sold their house in San Diego to finance the documentary. Then they spent the next two years researching, filming, and producing.

The finished film features Akers as she tries to understand her mother’s illness, characterized by widespread pain and fatigue. She interviews her mother and six other patients, as well as doctors and health-care providers. “I didn’t originally think I would be in the film,” Akers said. “But it ended up making sense—it really was our family that was the motivation for the film.”

A Positive Response

Response to the documentary has been overwhelmingly positive. Lynne Matallana, president and founder of the National Fibromyalgia Association, who is also interviewed in the film, is happy to have a story about fibromyalgia on film finally. “Living with Fibromyalgia is the first documentary to explore the most intimate feelings and life-altering experiences of seven individuals living with the daily challenges of fibromyalgia,” said Matallana. “It will make you laugh and cry… A must-see for anyone who is living with or knows someone with fibromyalgia.”

The film is available on DVD, and partial proceeds from sales will go to the NFA. It’s estimated that as many as 8 to 10 million Americans have fibromyalgia. The condition has been noted in medical literature since at least the 1800s but was called muscular rheumatism or fibrositis. It’s even suspected that Florence Nightingale, who was essentially bed-bound after her heroics in the Crimean War, had fibromyalgia. Even with a long history, it wasn’t until 1990 that the American College of Rheumatology published diagnostic criteria for physicians to use.

For more information, visit: Living with Fibromyalgia.

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About Julie Z. Lee and Lainey S. Cronk

Julie Z. Lee

writes from Northern California.

Lainey S. Cronk

writes from Angwin, CA

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