Tuesday, March 8, 2011

You Say You Want A Revolution?

The diagnostic criteria for Fibromyalgia was established by the American College of Rheumatology in 1990. 21 years later entirely too many of our medical professionals still don't "believe" in it. Dismiss us as lazy, crazy, wimpy or junkies, believing it is depression or made-up or whatever. As new research comes in it is trying to ditch the "Arthritic" classification and align itself as a "Neurological" illness. However, if one has a Rheumatic disease they are more likely to develop Fibromyalgia. It is very confusing and complicated. The Mayo Clinic, a trusted superior authority in medical advancements and research, explains the unknown causes and known research:

"Doctors don't know what causes fibromyalgia, but it most likely involves a variety of factors working together. These may include:
  • Genetics. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.
  • Infections. Some illnesses appear to trigger or aggravate fibromyalgia.
  • Physical or emotional trauma. Post-traumatic stress disorder has been linked to fibromyalgia.
Why does it hurt?
Current thinking centers around a theory called central sensitization. This theory states that people with fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to pain signals. Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals."*

That's it? That is all they have come up with in 21 years? That and 3 FDA approved drugs, the first approval in 2007. WHY? Because of lack of research. Because of lack of funding. Because of lack of awareness. Because we the patients are too sick to fight for ourselves. Because we the patients spend our precious diminished energy fighting each other since we all experience Fibromyalgia so differently. Because we the patients are ashamed to have something that is not "real" so we shut-up and suffer silently and miserably. And while it is not a terminal illness, it can progress to the point where one can no longer function, rendering them disabled. And then its good luck getting that disability check or government health care or prescriptions to dull the raging burning fire inside. It's a horrible situation not enough people are doing not enough about!

As I started networking and sharing my blog with so many other Fibromyalgia patients last summer I became seriously enraged. So I started this little awareness campaign called The Fibromyalgia Crusade on September 24, 2010. It was a rant of a post on my Facebook notes, a just planted seed. I had no idea what I was going to do, just knew something had to be done. I looked out and saw a huge and growing patient body suffering beyond belief and knew if we came together, putting all the petty differences aside, and stood strong as one huge collective, we could affect change. We have grown, my we have grown, and slowly but surely it is knitting itself into a mighty cause. 
  • We developed a "Purple Pain Code" to communicate our fluctuating symptoms to each other. 
  • We created a Doctor Appointment packet for those that needed help in getting their symptoms managed with their doctor. 
  • We started a support page on Facebook called The Fibromyalgia Fun House
  • We began wearing The Fibromyalgia Crusade wristbands and key chains in our 3 eye catching colors of the Purple Pain Code. 
  • We developed a postcard with a brief summary and description of who we are and what Fibromyalgia is, which one can print and pass out to those that are uninformed.  
  • We started talking about it and standing up for ourselves to all the naysayers. 
  • Now we are wearing tee-shirts with our beautiful purple ribbon, dark at the top fading to light at the bottom, blaring Fibromyalgia awareness into the faces of everyone we come into contact with and standing tall in the reality of this illness, with the strength of The Crusade behind us.
So that was phase 1.

Now we must progress to phase 2. I am writing a letter to our government, from the President on down to Governors of states, and everyone in between, that will be made available shortly and each person can print out, add their story, and send to their elected representatives.  We are taking "government for the people, by the people" at its word and exercising our rights. And maybe if enough of that The Fibromyalgia Crusade letterhead passes the desks of these Senators and Congressmen we will start to get some attention. And that is all we need to start a revolution.

Thanks for joining,

 The Fibromyalgia Crusade Tee Shirts up to size 4x are in!

P.S. Please "Follow" Chronicles Of Fibromyalgia on Networked Blogs on Facebook (link from my badge on the right). Thanks!



  1. one thing that amazes me is that they saw we have a LOW tolerance to pain. I beg to differ!!!!! I had a c-section in May and the nurses were surprised at how quickly I was up and about and tolerating the pain...I simply told them based on the amt of pain I live with daily...this is nothing!
    While we might experience more pain due to nerve sensitivity we also become accustomed to it and in my humble opinion, we are have a much higher tolerance than most!
    What you are doing is soooo important....I'm on board 1000 percent!

  2. I agree with the above comment...I have had multiple surgeries, been involved in a bad car accident and I have always bounced back quickly..my threshold for pain is pretty high but the pain that we experience daily is the type that can wear you down and anything we can do to raise awareness and encourage research is so worth the time!! Keep up the good work!!

  3. My name is Matt Hawkins. My instagram is Munchkinator_17. You can count me in. I am not a FM patient but I want to help the most I can. I want to start the Fibromyalgia Awareness Revolution. Please if there is anything I can do too help raise awareness please dm me on my instagram.