Tony Award-winning producer and filmmaker Nick Demos is on a mission to bring the diagnosis, treatment, and consequences of fibromyalgia to the world’s attention. He has been personally affected by fibromyalgia: his mother, a woman with fibromyalgia, encountered a lack of pain relief, social ramifications, and few answers. He is on a mission to uncover the experiences of others living with fibromyalgia, including those not typically considered to have chronic pain syndrome, including a young athlete. He says it’s important to bring fibromyalgia to the forefront in the hopes of getting answers.
“We asked every person interviewed for this film, ‘What is fibromyalgia?’ The answer never makes sense, and for those who don’t, there’s a lack of urgency to find the answer.”
According to Demos, their findings so far indicate that people with fibromyalgia are subject to a failing healthcare system and that demographics such as access to education and socioeconomic factors come into play, according to the National Pain Report. In his film, he speaks to people of different backgrounds, ethnicities, and socioeconomic groups, but discovers common themes across all participants, he says.
“Diseases that no one sees, even more so, diseases that could trigger or be triggered by all these other conditions that are truly deadly. Fibromyalgia hasn’t gotten much attention yet because it doesn’t kill you, in the technical sense. But members of the fibromyalgia community will tell you how this syndrome can get worse if they don’t receive the empathy, lifestyle education, and community support that all their mortal counterparts already receive. This remains a controversial issue, even though millions of people are proving that the disease is real and rampant.”
The film is expected to be released in 2017 and will be featured in several movies next year, Demos says. Until now, the film has relied entirely on donations, usually from fibromyalgia patients or groups organized to raise awareness about fibromyalgia. The syndrome has been called an “elusive disease,” according to Chronic Pain Body. It is characterized by chronic pain, body aches, headaches, sleep disturbances, and mood swings. The fatigue associated with fibromyalgia can also be debilitating and makes it difficult to distinguish between fibromyalgia and chronic fatigue syndrome.
It is not a disease that causes deformities or threatens life by physical means, although patients with fibromyalgia and other chronic pain disorders may be more likely to commit suicide. People living with fibromyalgia describe the effects as severe: relationship difficulties, difficulty holding many jobs, financial instability, and depressed mood. Although no one knows the exact cause of fibromyalgia, some researchers believe it is due to chemical levels in the brain and may be genetic, as it appears to run in families. Women are more likely to be affected, although the syndrome can also affect men.
Although treatments are available, such as Lyrica and Cymbalta, no single medication seems to be the answer for everyone, and it can take a lot of time and trial and error to determine which medications work for patients and what doses they require. Self-care is an important part of treating fibromyalgia symptoms, including getting enough rest, eating nutritious foods, and avoiding circumstances that cause excessive stress or emotional energy. This can be difficult for many people due to life’s commitments and the symptoms surrounding the disorder itself.
Many people with this disorder feel isolated and misunderstood because the syndrome is invisible to others and misunderstood by everyone, including many doctors. Demos hopes his film can educate people and raise awareness about this debilitating syndrome.
