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Invisible – A Film About Fibromyalgia is Closer to the Screen

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 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 say 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 that 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, ethnicity, 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 filmfestivals 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.

Sami Jankins is a co-producer of the film, which is moving into post-production.

“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,” she said.

“Why is there no urgency?” she asked.

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.

See On Next Page: The director and executive producer did a Facebook livestream to answer some questions

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4 Comments

  1. Yes I’m a ultimate like so many others of fibromyalgia. Also I have musclesleklectical problems pain all over my body and because I have a hole in my spine which was found 15 yes ago but very small the doctors worry was they found ostiopina the onset of osteoporosis. But I’ve been lucky in that . But over this and lack of medical care I had to give up.work. I have now curviture of the spine on my left side so base which has trapped a nerve. Plus 3 protruding dicks. I on lyclear max dose but I’ve had to stop take anti inflammatory drugs. Which I realy need. I’ve 8 months ago I’ve been given oxideshor text which is form.of heroine. Which I’m not happy about. But I cannot now manage just on the pregablin along with Dizipsm. I now use a tens machine . I live alone so you images I have to do everything . And still try put a smile on my face when just travelling to the hospital can cause me to be in so much pain. I’m layer up and my back locks . I’ve been rushed away so many times I’ve lost count. But I can’t move when that happens. Life of he’ll. Your body is weak yet on fire. May God bless all those that have fibeen and I do hope this film will help bring awareness. Has for the brain yes we lack the fluid serotonin in the spinal colour to the brain which is responsible for transmitting brain signals . Plus it’s documented that fibromyalgia suffers there brains shrink 12 times more then the normal non sufferer so what a life time to look forward to. That’s why so many of us do have councillong. Depression comes with it of couse. Ones life is totally altered in e every way. It’s like living in another person’s body. This is just the tip. A few things.

  2. I just had to add.. I have Fibromyalgia but as I have done research and had conversations with many many people another invisible and painful illness called CRPS which I call it the sister to Fibromyalgia. This happens after a traumatic experience like child birth (which I believe I may have both conditions, I almost died after giving birth to my son, I actually believe I did die) a surgery gone wrong, as well as a broken arm,leg,even after a heart attack. I lost count on all of the invisible illnesses that are plaguing people,even IBS is a invisible illness. I am glad a documentary of fibro has been made because we are so poorly treated and not just our families but the medical community calls us “DRUG SEEKERS” along with many many other names, I have seen over 60 doctors in my quest to find help,find answers, I was told to my face, stop faking,you just want attention, a doctor put me on a medication I am highly allergic to (I didn’t know I was at the time) I believe it was called TRAMADOL, very first dose made the pain so intense, I believe I called a dozen times when he finally called back he told me to keep taking it and come see him the next day, I still remember how he talked down to me, he said he treated thousands of patients and I was the only one complaining about it, by the third dose I landed in the er. This man did nothing to help me and made things much worse. About two weeks ago I saw an article saying that tramadol is claiming lives, I started to cry because he made me feel stupid and less of a human being,he could have killed me and even if he did what discipline actions would have happened, the insurance would have paid but he would still have a job. It is not just about being sick but every aspect of being sick plays apart in it as well,even family can be cruel. My friend died two weeks ago, my aunt died,my mom died,my cousin died ….yes…I blame Fibromyalgia. Recently I have been getting severe chest pains but all the tests showed nothing (yes I actually know what is causing it,I can not think of the name off hand) but right now I feel as if I am waiting my turn for fibromyalgia to take my life as well, and I am terrified. I thank you for the work you have done but this is my personal opinion, the world doesn’t care about us and they never will, I have talked so much had a Facebook page, preach and preached about this for 5 years now (been sick for 12 years) because it is not cancer it is not important enough for people to care. I’ve been at this a long time now and people don’t care unless it DIRECTLY EFFECTS THEM. That is the sad part ….

  3. I judt came across this artical and i am a person who has Fibromyalgia and other chronic fatigue as well as other things that go with it.
    Its been 25 years that i have had this disease and it gets worse,just reading this and i started to cry i have been in a flare now for monthes and i am so tired of the pain the tiredness, the ibs and all the rest.I wiuld love to see this film and thank you for doing it to make people aware of it.

  4. I was diagnosed with Fibromyagia in ’92. I have tried diets and drugs but so far NOTHING helps and it seems that just a stimulation of my muscles causes more pain and fatigue. My health care is VA and they don’t have FM specialists even though the VA recognizes FM as an illness in many soldiers. Mine was triggered after back surgery.