Sunday, September 27, 2015

Progression Of Symptoms

The medical community as a whole says that Fibromyalgia is not a progressive illness.  I highly disagree with that.  Even my family doctor told me that I'm getting worse.  This is an area that I'd love to see more research in.

My symptoms progressed from a child to a teen ager.  From a teen ager to a young adult.  From a young adult to middle age.  Now in my mid-40's I can see and feel a difference almost monthly.  I hate to see what kind of shape I'm in when I reach my mid-50's and beyond.  I worry that eventually I'll end up in a wheelchair.

I'm by no means an expert; I only have my personal experience and the countless stories of others that I've met, but there isn't a doctor out there that could convince me that Fibromyalgia isn't progressive.  Everyday pain is worse for me.  Flares come closer together, last longer, and are more intense.  What is your personal experience?

I handle the pain, because I have to. There isn't any other choice.  I must say though, it becomes harder and harder to deal with on a daily basis.  I awoke this morning with my lower back feeling as if someone poked a hole in it while I was sleeping, and poured it full of concrete.  It still feels that way.  The pain and stiffness just won't go away.

Constant, nagging pain wears on a person's mental state.  It's easy to allow yourself to fall into the dark hole of depression.  That's something that's a constant battle.  Everything combined, the pain, the fatigue, the depression, makes living life feel like a war zone.  Always trying to dodge a bullet.  

The medical community has come a long way concerning Fibro over the years, but we still have a long, long way to go.  I'd love to see a case study done, that follows people with fibro over a 20 year span.  If it was done with a big enough sample, I'm sure doctors would come to the conclusion that Fibro is a progressive illness.

There are researchers out there who would love to do more research on Fibromyalgia, but they just don't have the money to do so.  The NIH's categorical spending says that in 2015 $10M was allocated to Fibromyalgia research.  In 2016 it's supposed to be $11M.  In retrospect, screening and brief intervention for substance abuse received $30M in 2015 and will receive $31M in 2016.  Call me what you will, but it makes me sick that $20M MORE is being spent on something that is someone's own fault, than to try and find a cure for something that none of us asked for.  You can see the breakdown chart by clicking HERE.  Someone who's addicted to drugs or alcohol made the personal choice to pick up that needle or that bottle of alcohol the very first time they did it and every time thereafter.  Not one time in my life did I make a choice to be burdened with an illness that is slowly destroying my entire life and ripping away any quality of life.

In my opinion, we all need to shout and cry until we don't have a voice left, for more research of Fibromyalgia.  For more funding for Fibromyalgia research.  The old saying "You get what you get and you don't pitch a fit" does not apply.  I refuse to sit quietly back and just accept this illness as fate.  If those of us who doesn't personally suffer with Fibro won't try to do anything about it, then how can we expect anyone else to?  We can't.  It's up to us, my fellow fibromites.  We need to band together and make things happen.

Wednesday, September 2, 2015

Just Another Day In Life, With Fibro

I use this hashtag a LOT on my facebook page:  #JustAnotherDayInLifeWithFibro  because it seems no matter what is going on in my life; no matter what symptoms I have, it all can always be chalked up to "just another day in life, with fibro".  It's my feable attempt at being at sarcasm.  If I didn't just shrug and tell myself it's "just another day in life, with fibro" then I'd spend a lot more time crying than throwing my head back and laughing.  

As long as I've been sick; as many stories of others pain with this illness that I've read, you'd think I'd be use to this by now but I'm not.  Tonight, I feel as if a dagger is going through the top of my head.  My forehead and cheek bone feel as if they've been crushed into a thousand pieces.  My knees have a dull, deep ache, I keep getting sharp shooting pains in my shoulders, my middle back feels disconnected from my lower back, and just to the left of my spine in my lower back ...yeah, right where that dimple is just above the butt, is throbbing with a sharp shooting pain.  I am not, nor will I ever be, used to this.

This is one of those nights where I keep mumbling "ouch" outloud, but what I'd really like to do is throw myself down on the ground and have a good 'ole temper tantrum.  Just kick, and scream, and let the tears fly until someone scoops me up, hugs me, and tells me everything is going to be alright.  If only that would work.  

It's a hard night.  I'm in pain.  The pain is making me depressed.  I hate that I'm alone (single) because I think having a significant other in my life would help in times like this.  I DO know though, that I'm not the only one to feel like this.  I know that there's unfortunately others out there feeling the same kind of pain as I am, at this same exact moment in time.  I also know, that it's just something I'm going to have to live with because after all  ....it's "just another day in life, with fibro".  

If any of you ever have a "just another day in life, with fibro" moment please feel free to hashtag it to me.  You can find me on twitter @jaammull or on facebook at: The Fibro Frog.