Saturday, December 20, 2008



Such a simple word but so very hard to deal with, understand, and treat. I know everyone has some kind of pain in their life. When you deal with it on a daily basis all you can do with it is deal.

I live with fibromyalgia. It is my constant companion, my friend and foe, the one thing I can say will always be there. For those of you that do not know what it is let me explain it a little. It is wide spread pain that cause's your muscles to contract and hurt 24/7. There is no cure, only pain management. They do not know what causes it either.

I have heard of several non-medical treatments such as hypnosis and acupuncture but I'm not sure if I really believe those 2 treatments work. would you want to see a shrink for your pain and let them tell you it's all in your head like so many other MD's have done in the past? or would you like to have someone poke you with needles over and over again causing you more pain when your already in pain? I for one would not. People have said "the needles are so small you don't really feel them" well I would because some times just the slightest touch hurts me, and I mean... A LOT!

So what is there to do? Since I was diagnosed 3 years ago this Feb. I have been on more medication than I would like to be on and the only thing that seems to help is the narcotics which I do not want to be on the rest of my life, because after a while even those don't work and the Dr. has to up the dose over and over again. So I pose the question again..... What is there to do?

So many people in my life have said "everyone lives with pain, honestly how bad can it be?"..... "your just a hypochondriac"..... "your just depressed"...."lose some weight and you'll feel better"....."just deal with it everyone else does, aren't you strong enough to?". Well now, If all of the above statements are true then I'm just a mental case then aren't I? I think not!

This is a REAL disease and the definition of a disease is this:
a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms
I have been told like all the others before me that is not a disease it is a disorder. Well the definition of a disorder is this:

1 : to disturb the order of 2 : to disturb the regular or normal functions of
now when you look up fibromyaglia in the medical dictonary it says this: any of a group of rheumatic disorders affecting soft tissues and characterized by pain, tenderness, and stiffness of muscles and associated connective tissue structures

How can something that disturbs the regular or normal function of a person that can't be cured just be a disorder? I honestly believe that it is a disease because EVERYONE I know with this "disorder" is getting worse the older they get, their quality of life is not what it should be and once they go on pain medication they never come off of it.

I do not want to be this way and I do not want to live the rest of my life in pain. I would gladly take part in ANY trail study that is out there to "cure" is "disorder" but there isn't any in my area or any that I can get to with out losing everything I have worked so hard for.

I say to all of you.... If there is anyone in your life that is in constant pain or dealing with any kind of struggle.. PLEASE do not try to "soften" the situation by saying any of the above phrase's. Just be there for the person in anyway that you can and if you find that you can't be there for the person then stand up, be an adult and just talk to them about it all instead of treating them badly, it only makes things worse when you think you have someone that truly cares for you and understands some of what your going through one minute and the next you don't. So if you don't understand,... ask. If you still don't understand or if your interested in understanding
then do research on the subject. DO NOT just "drop off the face of the earth" to that person, we all are still human and have feelings too.


1 comment:

Recovering Grady Addict said...

I live with chronic pain too. Two people's worth. Mine AND Lenya's. I can'tbegin to tell you how disruptive it is for our home, careers, and lives.

As for as your fibromyalgia goes... couple of suggestions:
1.) Gabipentin (aka Neurontin).
It's a non-narcotic nerve blocker. It works for several neurological symptoms such as seizures and neuralgia / neuropathy. It's being used to treat fibromyalgia because of it's (not yet understood) effets of blocking pain receptors in those tiny lil nerve endings where the pain begins. It's MY miracle drug because it GREATLY REDUCES my dependancy on narcotics every day.

2.) Accupuncture. Yes. It sounds very much like it would worsen the pain and defeat the purpose. But when I could afford to go (worker's comp will not pay for "alternative therapy" like this and chiropractics, and I had to pay out of pocket) It really did help. You HONESTLY don't feel the needles because they are like 26 or 28 guage. TINY! Many health insurance policies WILL cover it these days!

3.) Reiki Therapy. I know I can't be there to do session for you. I'd do them for free. Next time you visit your mom, let me know and I will treat you! If you feel better (which I think you will) I can help you find a reputable Reiki Master near you.

4.) Meditation. I will be happy to help you out with this one too. Call me later today when you are free!!! I will send you some CD's I have burned for my own clients.