Friday, June 22, 2012

How Do I Explain Fibromyalgia?

I attended the birthday party of a good friend last night, just an intimate and impromptu get together at her house. I found myself given the opportunity, for the first time since taking up the proverbial Fibromyalgia cross, to explain my condition and raise awareness. But I was at a loss as to what to say without launching into 20 minutes of background information to answer each question. It is a messy and complicated illness with so many variables between every patient, each with an individual and woeful tale to tell. It became abundantly clear as I was losing my momentum and focus that I must devise a "30-Second Elevator Ride" synopsis that clearly defines, explains and promotes the cause. So today while football pulsed from the TV and my husband hollered so loud Yorkie & Porkie ducked for cover under the bed, I researched. I need the best, most effective, clear and concise synopsis of Fibromyalgia to get the word out and leave each person I encounter with a basic and clear understanding of what Fibromyalgia is. Not Fibromyalgia as Lyrica or Cymbalta advertise, not to diss the attention their advertising brings. But really, WHAT IS FIBROMYALGIA?

Fibromyalgia is a neurological disorder resulting from excessive pain stamped permanently onto the central nervous system. It heightens the sensory perception of pain through a disruption of neurotransmitters, blood flow to the brain and impaired communication between the brain and spinal cord. The pain can be so bad it is disabling and there are lots of other symptoms too. Basically it feels like the worst flu you have ever had in your life, pretty much all the time. Genetics make a person susceptible to Fibro but alone don't cause it. There is no cure and medications offer limited relief with a high-incident of side-effects.

And that is my layman's definition of Fibromyalgia. Now I just have to commit this to memory (did I mention Fibro-fog?) and pull it out any chance I get. I believe if I keep the focus off my specific experience and make it more about a general condition many suffer from it will go a long way in promoting the "realness" of this spectacularly awful predicament we find ourselves in.

Thanks for joining,
Leah

This blog was originally published on 9/12/10. When I wrote this it made me realize I didn't really even know how to define it myself. Two years later I can now tell you pretty much anything about Fibromyalgia inside out, upside down and backwards in Latin. Knowledge is power!

4 comments:

  1. Leah I have 4 kids and they are getting of the age where they ask questions about my health so I thought I would share how I explained Fibro for them in case you or anyone else has littlies to try and explain it to.

    If you fall over and hurt your knee your nerves send a message to the brain to say you are hurt and you feel pain. With my illness my brain sends messages through my nerves to say I am hurt and in pain when actually I haven't fallen over or hurt myself. When you are in pain all the time it makes you very tired and can make you cross so because my brain is sending the wrong messages it makes me ill.

    My 12 year old I went into a bit more about fibro as he gets it better but this explanation has really helped my younger kids x

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  2. I copied and printed out your explaination, it was perfect!

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