Fibromyalgia, among other things…

I realized recently that aside from a few simple “mentions” I’ve never really blogged about my … er, um… ‘disorder’ or whatever you want to call it. I’ve always taken issue with calling it a disorder or a disease because I don’t feel as though I’m out of order or riddled with disease LOL It’s a bit different for me than it is for most people who suffer from Fibromyalgia because I’ve been dealing with it basically my whole life. Almost all of the people diagnosed with the illness are middle aged (around 35) and more women are diagnosed with Fibromyalgia than men. When I was diagnosed 17 years ago, I was 9 years old. No one knew what it was… I felt like I was a walking cootie or something because I would say I had it and people would go, “What’s THAT?” with an ewwww look on their face. Then, they would simply become perplexed when this 9 year old would start babbling about how it’s a musculoskeletal disorder with no known cause and no known cure characterized by widespread pain throughout the body, blah blah blah (as if I really knew what ANY of that meant at the time anyway…) and no one even had a clue what I was talking about.

Now, here we are almost 2 decades later and after all of the “it’s all in your mind” speeches, and the doctors claiming I had been misdiagnosed because there wasn’t any POSSIBLE way a child of that tender age could have such a thing, it’s such a liberating feeling to see COMMERICALS about it… I mean, people actually acknowledge that it exists – that it’s not all in my mind… for YEARS I had begun to wonder if I was just crazy enough to imagine I was in pain, or if something was actually wrong with me. I was subsequently REdiagnosed by three different doctors between 2000 and 2004 as I sought treatment for my symptoms {pain, pain, and more pain, basically… add in the daily headaches, sucky memory/concentration/focus and a little more pain, stiffness, and the dreaded eye-burning sleepiness no matter how much sleep I get, and there ya go}…

The initial response I always got from medical professionals {chuckle} was, “That’s nearly impossible. No one is diagnosed that young.” That statement is normally followed by something along the lines of, “Oops.” Then the diagnosis that *gasp* I actually DO have fibromyalgia and the doctors who took care of me so diligently at Shriner’s Hospital for Crippled Children in Shreveport, LA for 5 years following the removal of my bone tumor when I was 8 actually WEREN’T total quacks after all. HUH? Whoa… Anyway… I’ve often been asked how I manage such a “disease” and honestly I don’t have an answer to that. Some days are harder than others; sometimes I can ignore the pain completely just because it’s always been there and I don’t really know what it’s like to be free of it. I like to think I’m kind of lucky that I’ve been dealing with it for so long because it is kinda like the difference between being born blind or becoming blind at like 35 years old. Probably much more difficult to adapt at 35 than at birth. Well, of course fibromyalgia doesn’t keep me from seeing, but since pain has been sort of a part of my daily life for so long, my tolerance/threshhold is through the roof because I’m just used to it. Barely any level of pain can actually stop me and rarely even slows me down at all. So I suppose I manage simply because I don’t know anything different. For me, it’s just part of how life has always been… which I assume is much easier than developing it in mid-life after having spent so many years NOT experiencing these kind of symptoms.

When I have headaches, backaches, shoulder/neck pain, joint stiffness, numbness, fatigue, depression… when my hands just won’t allow me to use the manual can opener; when it feels as though my spine is trying to pull apart from my lower body… or when my knee feels as though there’s a rock of hot coal inside of it, or my muscles ache like I played the role of the football in last night’s game… well, I just try my best to move on, knowing that the next hour may be better than the last… or it may not. But the fact of the matter is, no “disorder” is going to claim me and make me label myself a “sufferer” – I have fibromyalgia. But fibromyalgia doesn’t have me.