Nick Demos, a Tony Award-winning producer and filmmaker, has a mission – he wants to bring Fibromyalgia diagnosis, treatment, and life consequences to the consciousness of the world. He is personally touched by Fibromyalgia: his mother, a woman living with fibromyalgia, has encountered a lack of pain relief, social ramifications, and few answers. He is on a mission to discover the experiences of other people living with Fibromyalgia, including people typically not thought of as having the chronic pain syndrome, including a young athlete. He says it is important to bring Fibromyalgia to the forefront in hopes of getting answers.
“We asked every person interviewed for this film, ‘What is Fibromyalgia?’ The answer is never consistent, and for those who don’t have it there is a lack of urgency to find the answer.”
According to Demos, his findings so far indicate that those with fibromyalgia are subjected to a broken health care delivery system, and those demographics such as access to education and socioeconomic factors come into play, according to National Pain Report. In his film, he speaks with people of different backgrounds, ethnicities, and socioeconomic groups, but discovers common themes for all participants, he says.
“The illnesses that no one sees, even more so, illnesses that could potentially trigger or be triggered by all of these other conditions that are indeed fatal. Fibromyalgia has yet to have the limelight because it doesn’t kill you, in the technical sense. But those in the Fibromyalgia community will tell you how deteriorating this syndrome can be if they don’t receive the empathy, the lifestyle education, and the community support that all of their fatal counterparts already get. It continues to be a controversial topic, though millions prove the illness is real and rampant.”
The film is scheduled to be released in 2017 and will be entered in several film festivals next year, Demos says. So far, the film has been completely donation based, usually from Fibromyalgia sufferers or groups that are organized to bring about fibromyalgia awareness. The syndrome has been referred to as an “elusive illness”, according to Chronic Body Pain. It is characterized by chronic, all-over body pain, headaches, sleep disorders, and mood changes. The fatigue associated with Fibromyalgia can be debilitating as well and leads to difficulty in distinguishing Fibromyalgia from Chronic Fatigue Syndrome.
It is not a disease that causes deformities or threatens life through physical means, although patients who suffer from Fibromyalgia and other chronic painful disorders may be more likely to take their own lives. People living with Fibromyalgia describe the fallout as severe: relationship difficulties, difficulty in performing many jobs, financial instability, and depressed mood. Although nobody knows the exact cause of Fibromyalgia, some researchers believe it is due to levels of chemicals in the brain and that it may be genetic, as it seems to run in families. Women are more likely to be affected, although the syndrome can affect men as well.
Although treatments are available, such as the medications Lyrica and Cymbalta, no one drug seems to be the answer for everyone, and it may take significant time and trial and error to discover what medications work for patients and which dosages they require. Self-care is an important part of dealing with the symptoms of Fibromyalgia, such as getting enough rest, eating nutritious foods, and avoiding circumstances that cause undue stress or emotional energy. This can be a challenge for many people due to life obligations and the symptoms surrounding the disorder itself.
Many people who have the disorder feel isolated and misunderstood because the syndrome is invisible to others and not well understood by anyone, including many doctors. Demos hopes his film may educate people and bring awareness to this debilitating syndrome.