May 12th is Fibromyalgia Awareness Day! This year I plan to attend a walk in New York City to raise money and awareness of this disabling disorder. It is called the Caterpillar Walk and will be held this Saturday. My wonderful son will be accompanying me. I think he is most excited to be going into the the city. He has never been even though we have driven by or stopped on the outskirts numerous times. I am also excited (er… nervous) – (1) I have never driven in NYC before, (2) with my brain fog, I am worried I will get hopelessly lost, (3) I will forget where I parked, (4) what if my feet and legs are in too much pain? (5) what if I am too fatigued to drive home? The worries are endless…
Raising awareness for any illness is important. It helps when we are advocating to legislatures about allocating funds for research and treatment options. It helps when we are raising money for advocacy and research. It helps when trying to explain our symptoms to family and friends, and even strangers.
So, for those of you who are not familiar with fibromyalgia, here is the 30-second elevator speech version:
Fibromyalgia is a chronic pain disorder with a variety of symptoms, the main ones being: fatigue, sleep problems (including insomnia, sleep apnea, non-restorative sleep), cognitive dysfunction (also know as brain fog or fibro fog), stiffness, tenderness. Other symptoms that can occur are depression (because who wouldn’t be depressed sitting around all day in pain?), anxiety, migraines, acid reflux, irritable bowel syndrome, irritable bladder, pelvic pain, temporomandibular joint disorder. Doctors do not know what causes this condition but research has shown it effects the central nervous system, immune system, and the sympathetic/autonomic nervous systems.
In a nutshell, it sucks. As a Guns & Roses songs states, “What we have here is a failure to communicate.” It is like our bodies are out of sync and rebelling against us. This has a profound impact on our daily quality of life.
I have a challenge for all of you who do not have fibromyalgia. Place a clothespin on one of your fingers. Can you last ten minutes with it on? How about an hour? A day? That is only one of the symptoms people with fibromyalgia live with on a constant basis – only we never get to take the clothespin off.
What makes something real? I really want to know (no pun intended). I recently got into an argument about what makes an illness a real illness. So many illnesses start off as being attributed to stress – e.g. lupus, multiple sclerosis, arthritis, ulcers, migraines. If an ailment is not properly understood, it seems to be brushed aside as yet another consequence of stress. Patients are told to buck up and get over it; think positively and carry on. Just because medical technology has not gotten to the point where it can detect an illness does not make it psychosomatic, a figment of their hypochondriac imagination, or (my favorite) depression. Nowadays it is accepted that MS is a real disease. We would never dream of telling a MS patient that they would feel better if they just got out more, or exercised more, or thought more positively. We wouldn’t call someone in the midst of a migraine lazy for needing to lie down in a quiet, dark room to rest. Fibromyalgia and chronic fatigue syndrome both have a large body of scientific, peer-reviewed research behind it. So why do people, including doctors, continue to still insist they are not real? Just because there is not single test to detect either disease, just because there isn’t a cure doesn’t mean these are not real diseases.
The person I was arguing with pointed out that you can find a study to prove anything, that often current research will negate research that is 10 or 20+ years old. That is true to a certain degree. There is a lot of flawed research out there. This is why research is not acceptable until it has been peer-reviewed and replicated. The scientific method states that in order for an observation to be valid, it must be replicable. Also, people will erroneously believe that an earlier study has been disproved (I am talking about medications and supplements here) when abuse of said substance results in different results. Of course the end result with be different if abuse occurs. Duh! Case in point: way back in the 1990s, creatine was considered a wonderful supplement for bodybuilders to take. Now the media treats it like a pariah. Why? Because a bunch of baseball players, among others, abused it to get astronomical results. That doesn’t mean it is a bad supplement to take. Taken in moderation or when a person has a deficiency in it can have wonderful results. Bottom line is when research is peer-reviewed and replicable, it can be trusted as fact. If we doubt ALL research, science will come to a standstill.