I recently watched the newly released documentary on fibromyalgia – “Invisible.” produced by Nick Demos. The interviews with the individuals living with fibromyalgia did not surprise me – being I live with fibromyalgia myself and completely understand their struggles. What it did show me was that people all over the world with fibromyalgia do struggle with many of the same hardships. What I found interesting was the information presented by the doctors and wellness coach in their interviews.
Dr. Liptan was interviewed in this documentary. She got diagnosed with fibromyalgia during medical school, has treated patients with fibromyalgia and now focuses her attention to research on fibromyalgia. She stated she feels we are 50 years behind in regards to fibromyalgia knowledge and treatments. Yes, you read that right, 50 years!!! In fact, she presented a time line of fibromyalgia. Did you know there was a 35 year gap on research or discovering anything new in regards to fibromyalgia!? We all know that there is lack of research, but I never thought there would be such an enormous gap between discoveries on a condition that is being diagnosed more and more. The first FDA approved medication to treat fibromyalgia was not even released until 2007! Reality is that wasn’t very long ago seeing as fibromyalgia was being diagnosed way before 2007! Liptan explains that she feels that fibromyalgia should be considered a disease, not a syndrome. She believes this because there is proof that there is consistent changes in the brain and body.
Dr. Liptan also shared her thoughts about insurance companies and how they only pay for certain medical routes. Most support people with fibromyalgia need, is not covered by insurance companies – vitamins, maintenance appointments such as acupuncture, massage, myofascial release, ect. Dr. Liptan states insurance companies will pay for MRIs and expensive medications, but all she wants in some cases is to see insurance pay for a gym membership. It does make sense. I was told from day one I should utilize the gym, but I can’t afford to pay for a membership. Same goes with swimming – all the doctors I saw recommended swimming as a treatment option for fibromyalgia as it is a low impact exercise. However, who can afford a membership? Even a monthly membership to the pool can get costly not to mention the money spent on gas to travel to and from the rec center. In my case, the pool is on the completely opposite side of the city then I live.
Tammy Stackelhouse, who is a fibromyalgia coach and also has fibromyalgia herself was also shown being interviewed by Nick Demos in Invisible. Demos and Stackelhouse converse about how many people can’t afford the holistic treatments that insurance either has a cap on how much they will cover yearly or simply do not cover these treatment options at all. Nick asks what happens then!? I know many people who can’t afford treatments being recommended to them such as yoga, massage therapy, acupuncture..the list goes on – especially with cost of living continuing to increase! I know there are many yoga, tai chi, ect. self directed videos online, but when you factor in chronic pain, it is not as simple as taking part in these follow along videos. There are a lot of other aspects to consider when dealing with chronic pain – which many of us need the guidance with, but don’t receive. Stackelhouse’s response is very realistic and hit me hard emotionally. She states, ” There is not a-lot of hope!” People in these difficult situations – of not being able to get treatment because they can’t afford these routes – “are probably not living really.” In my own struggle with fibromyalgia I often told my doctor I felt I was only existing and not living anymore. When we wake up with chronic pain – pain that hits levels of 10 that lasts all day long and go to bed in pain it makes life unbearable! No one wants to live life trying to “survive” instead of enjoying life, but for many of us living with fibromyalgia that is reality.
Stackelhouse explains there is a hopelessness in the fibromyalgia community. How true this statement is. I think all of us who live with fibromyalgia feel hopeless at some point during our journey! How can we not!? We get diagnosed with fibromyalgia which currently has no cure and then we are often left on our own without guidance to figure out how to limit our chronic pain. We are left to adjust to life with fibromyalgia. Many of us may even feel like we have “lost our identity” – of who we are. Through our journey we encounter doctors who believe fibromyalgia is not real and we are often told to get used to it as this is now your life. I recently had two back to back experiences with doctors who I believe do not believe fibromyalgia is a big deal. I got dismissed stating I was not sick and got told my anxiety was the cause of why I was not feeling well. These doctor visits were not even fibromyalgia related.
Demos also gets diagnosed with fibromyalgia while filming the documentary. He visits Dr. Melissa Congdon ( who has fibromyalgia herself and treats many patients with fibromyalgia) who conducts a physical exam to look for a specific pattern of muscle spasms or swellings. I found this interesting information so I decided to do some research on Dr. Congdon. On her website she refers to Dr. St. Amand – who has examined over 10 000 patients with fibromyalgia. He noted in every exam – every patient had muscle spasms and swollen places ( he calls these nodules) scattered pattern like though out the body! 100% of the patients examined had nodules in their left anterior thigh. He believes if someone has nodules in their left anterior thigh they have fibromyalgia. I had never even heard of this theory. Why isn’t this way of diagnosing fibromyalgia used by doctors and specialists!? Is there not enough proof ? Or are doctors, specialists and health care providers just not aware of the information!? I don’t have the answer to this. Again, food for thought!
I would recommend watching the documentary Invisible! It was put together well and very informative! You can rent it on Vimeo.