FaceBook

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.





3 comments:

  1. I feel your pain. I UNDERSTAND what you are going through. We can only do what we can handle. We try to do more than we can.We miss doing what we can no longer do. Live everyday the best we can. I lived in Florida for two years. I felt the best, I would clean the grandchildrens, swimming pool, then do exercises with the noodles. Before they would get in. Living in Wisconsin now, I have to do a indoor pool tho keep the water temp where it needs to be. I do not make it there as much as I should to help. As you know some days are harder than others to get motivated.

    ReplyDelete
  2. I'm so glad to read someone addressing this issue! I remember when I was diagnosed the doc said there is no cure but the good part is it does not do any permanent damage or progress! I knew within a year or two they were so wrong.

    ReplyDelete
  3. Fibromyalgia may not be progressive, technically. It is progressive in the toll it takes on our body and it gets worse with age. I am 59, some days I feel like I am 159. I believe there is internal damage like inflammation and mitochondrial damage that over time makes us feel worse. It is such a shame the our healthcare system is driven by profit.

    ReplyDelete