For those of you who aren’t familiar with this syndrome, fibromyalgia (abbrev FM or Fibro) is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue, cognitive problems, and depression. (This is the abbreviated list, there are a few other, less common symptoms as well as a host of additional diseases and syndromes that are often co-morbid). For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities.
(There is a wonderful explanation of living with these types of symptoms called “The Spoon Theory” which was one woman’s way of explaining it to a friend, because it is really hard to understand if you’ve never experienced it.)
There is no cure for fibromyalgia. In recent years there have been improvements in drug therapies to help manage the symptoms, as well as additional recommendations on specific lifestyle modifications, dietary changes and complementary alternative medicines that can be useful for managing symptoms. But it is only management, not a cure.
There is no simple diagnostic test to identify the syndrome. It is an invisible illness, meaning those who suffer from it “don’t look sick.” It also disproportionally affects women. All of these factors lead people, even many doctors until recently, to dismiss the suffering of those afflicted by it. They are told that “there is nothing wrong with you” or “it’s all in your head.” The average length of time it takes to even receive a diagnosis is 7 years. Imagine living in constant pain for 7 years and being told that you were crazy.
That’s why FM Awareness Day is so very important. (It also raises awareness about invisible illness/invisible disability generally, which helps those suffering from things like CFS/ME, IBS, Crohn's, Lupus, RA, MS, etc.)
I was diagnosed with Fibromyalgia in 2006. I was working on my PHD at the time and I was a complete wreck, practically bed ridden. As if the debilitating pain and fatigue weren’t enough, the cognitive impairment was severe and scary. I started bawling one day because I couldn’t remember the word for the microwave. I was 26 years old and trying to complete an advanced degree and couldn’t remember basic words and was putting the peanut butter in the freezer and my car keys in the pantry.
I was very fortunate. I was able to get a diagnosis only a year after the onset of the first symptoms. This was largely due to the support and the medical knowledge of my parents. My dad is doctor and he’s been on top of all of the latest studies and off-label prescription options and we’ve managed to find a combination of medications that keep me relatively functional. (Though I live with my parents and I’m leaving my current job in part because the hours, stress, and lack of flexibility are taking their toll on me. So, ‘functional’ is still way outside of the norm for a 30 year old.)
So, please, take a moment today to read or share the info available at a http://www.fmaware.org or the stories of those living with this and other related conditions at a site like http://www.butyoudontlooksick.com/
Add the “Make Fibromyalgia Visible” graphic on your website/journal/blog/email signature, etc (additional sizes available). Send a tweet or retweet or post on facebook. Add a twibbon to your icon. Anything you can do to help get the word out will be much appreciated by all of us.
Sorry so long, but I’m obviously very invested in the subject!