Directed by Nick Demos. Click here for the link. To listen to the podcast interview with Nick, Click here.
Making the invisible visible.
I got a chance to interview Nick and discuss the new film which does a great job of capturing the life of average people living with fibromyalgia. It also weaves education and understanding for this stigmatized illness.
Nick asks at the end of the trailer, "Is this in my head. Or is it real?"
The pain, brain fog, and fatigue are real. The central nervous system processes pain differently in those with fibromyalgia compared to those who don't have a fibro style nervous system. Those suffering are not hypochondriacs imagining this or intentionally choosing to have fibromyalgia. The film brings to the screen similar stories to what I have shared in my book and podcast and highly recommend checking it out.
It was a long journey
Nick shared that it took 7 years to put this independent film together for a variety of reasons, with one big one being that many people didn't feel fibromyalgia was a valid problem deserving of real attention. It is representative of what so many with fibromyalgia go through during their lifetimes. They are often dismissed, passed along from doctor to doctor without meaningful answers or solutions and in the process are felt to be nothing. The diagnosis is delayed typically for years despite seeing multiple doctors
"No one is putting all the symptoms together," said Dr Lipton, a family practice doctor who treats adults with fibromyalgia. Patients are going to many different doctors with regional pain symptoms. She also shared that the medical community is "50 years behind in research on fibromyalgia."
Children and adolescents get Fibromyalgia
The film shares the story of Rose who was diagnosed with fibromyalgia as a teenager but wasn't given much education or hope. She shared that it was scary when she got diagnosed. People told her she was crazy and all in her head. Despite this, she started to believe she could make positive results. She decided to do more of what makes her feel better and less of what hurts. She has to have a regular schedule, a healthy diet, and exercise to conquer and live well with fibromyalgia and put it into remission. Her story is truly inspiring. Due to time restraints and Nick's diagnosis of fibromyalgia during the documentary's filming, we get a brief glimpse of her journey. I will interview her for my podcast and look forward to hearing more about her story.
More focus on acute but not chronic pain
There are struggles for those with chronic pain getting the help needed. Expensive procedures may be covered, but a gym membership might not be. A yoga class or getting help from a dietitian may also be helpful and more cost-effective but not covered.
Many people assume those with fibromyalgia want to sit around eating bonbons and not want to work. Johann, who was a former athlete and had a full-time job before she developed severe fibromyalgia, shared a strong desire to work but was unable due to disabling fibromyalgia. She struggled greatly to pay bills and pay for meds.
Her partner, Amelia, also has fibromyalgia and has developed depression with it as well. Amelia was also very active and employed full-time in law enforcement before succumbing to fibromyalgia.
Is fibromyalgia preventable?
Genetics plays a big role. Tammi Stacklehouse, a fibromyalgia coach, shared, "You are eight times more likely to get it if you have a close relative with it."
Nick, the producer, shared he had chronic joint pain and IBS symptoms with dairy, so he stopped it. He realized he needed to stretch every morning, exercise, and do yoga to feel normal. He checked the insurance coverage for fibromyalgia treatments, such as meeting with a dietician or acupuncturist to help. This lack of coverage leads to significant out-of-pocket expenses that are a major barrier to achieving optimal treatments for fibromyalgia.
What is clear is that some people are more vulnerable to developing fibromyalgia due to their genetics. There are many other factors that affect the development of fibromyalgia.
Do I have Fibromyalgia?
During the seven years of investigating and learning more about fibromyalgia, Nick recognized he likely had fibromyalgia that he had been treating through exercise, yoga, stress management, a healthy diet, and other self cares. For example, he had IBS symptoms that were worsened with dairy and were controlled by removing it from his diet and eating lots of whole grains, fruits, vegetables, legumes, nuts, and seeds with limited processed carbs and animal protein. Nick told me in the interview that he would have chronic intermittent diffuse pain dating back to his years dancing. He compared the training intensity to the Olympic training of athletes. The environment was also competitive and stressful, which he feels retrospectively played a role in his pain. He also reports his chronic pain in early childhood with a history of growing pains at night, disrupting his sleep.
These realizations led him to seek a diagnosis from a fibromyalgia specialist, which was seen in the documentary. One minor criticism about his on-film diagnosis was that the doctor focussed on assessing for tenderness or swelling. Most people with fibromyalgia don't have any swelling or nodules unless they have a coexisting condition like rheumatoid arthritis. Also, tenderness may not be present, especially in men. The updated criteria in 2016 don't require tenderness. Instead, the widespread pain index and symptom severity score are used instead of tender points to make the diagnosis, along with taking a careful clinical history and screening tests like a thyroid panel, CBC, and sed rate.
Nick shared there was some variability in the understanding of fibromyalgia based on his interviews with those who had fibromyalgia and the medical community which he had previously been unaware of. "It seemed like everyone I interviewed had a slightly different perspective."
"Just a woman's disease?"
The doctor accurately shared that men with fibromyalgia are less likely to come in and seek a diagnosis. She also shared that fibromyalgia has unfortunately been thought of as just a woman's disease. Nick shared that they couldn't get any men to go on camera to discuss their fibromyalgia. Updated studies using the new criteria have shown that about 40% of those with fibromyalgia are men or boys. I have many men I treat for fibromyalgia and related problems.
He functions well with fibromyalgia due to "course correcting" through healthier lifestyle choices. But he contemplates, "what happens when I get older? The problem with fibromyalgia is that it manifests in so many different ways, here is not a treatment that will work the same for everyone." When you look at pain symptoms over a lifespan, there are higher rates of pain on average as one ages. There are many reasons for this, including overall decreased activity due to injuries, osteoarthritis, life stresses, and responsibilities. With this awareness, however, adaptions can help minimize the impact of these barriers.
We hear about Frida Kahlo, a Mexican artist with chronic pain and fatigue, who made her mark in the early 20th century in Mexico and may seem far removed from the challenges of living with fibromyalgia in the contemporary United States. Yet, experts believe she likely suffered from fibromyalgia. Dr. Lipton named her clinic after Frida. Her painting vividly shows what living with fibromyalgia feels like. Her story reminds me of Margaret Mitchell, the author of Gone With the Wind, who also had fibromyalgia. I did a 13-part series about her journey last summer.
Hopelessness in the Fibromyalgia community
What happens when one gets diagnosed with fibromyalgia? "Maybe you get diagnosed, and there is a belief you have lost your identity: working, the kind of parent, joy contributing to the world, your friends, and your life," according to Tammi.
Dr. Lipton shares her story of getting diagnosed during medical school in the early 2000s. "If I can just get better enough to get back to medical school, I will devote my whole life to helping people with fibromyalgia because no one should feel like this. When I get to the place where I want to give up, I think of my family." She has used evidence medicine and trial and error to discover what helps her live the best life possible with fibromyalgia.
No two people with fibromyalgia are the same, with each person having their own unique background, vulnerabilities, challenges, and goals. Through all his interviews, Nick discovered common themes in those with fibromyalgia, which I have found through working with my patients and research.
A Life's sentence?
Getting diagnosed is "like a life sentence." according to Nick. The reaction and response to the fibromyalgia diagnosis can vary. It is similar to my discovery of being vulnerable to heart disease and diabetes at age 33. No one wants bad news, but if you can do something to change the course, it is really good news. Just as we recognize treating conditions that lead to cardiovascular disease like high cholesterol, hypertension, smoking, and a poor diet can be prevented and reversed through lifestyle changes and medications, so too can fibromyalgia.
Tami Stacklehouse offered encouragement. "You can choose to have a good life. It's not a death sentence." Nick shared that consistent yoga and constant moving have helped him tremendously. Some with fibro think "they can't exercise, but they can. It may be different."
There is hope in hearing Rose's story, diagnosed with fibromyalgia at age 13. She works with clients who have fibro and helps prevent an injury from turning into chronic pain which happens for many. "For the longest time, I thought fibro was attacking me, the fibro and the Megan are together, and it didn't matter which it is. My purpose was to live on the planet with no limitations and to do everything to bring me joy despite the things I was told when she was younger. I feel like I am here to live as an example, and I hope it inspires other people to feel and do the same things."
Who should watch the film?
This film is great if you have fibromyalgia or a related problem like chronic fatigue syndrome, POTS, chronic abdominal or pelvic pain, or other pain syndromes. You will feel validated, more understood, and have hope.
If you have a loved one with fibromyalgia, you will recognize that many others live with this invisible illness. You will see the breadth and diversity of how it can impact those living with it.
If you are a doctor or work in the medical community, you, at a minimum, will gain a deeper compassion and understanding for your patients who are enduring this.