Big Huge List of Questions for Everyone

February 22, 2008

Why is it, even in a support group, everyone I've spoken to, or sent

private e-mail to, says they suffer this horrible disease alone?

This group has over 5,000 members or something like that. We all

share many things in common. Sure, we don't see treatment eye to eye.

We don't even see medication eye to eye. I won't get into the other

parts of this world we may or may not see eye to eye.

What do we share? We share a common thread and that is PAIN, ANGER,

FRUSTRATION at the fact that everyone I've come across outside this

group and the friends I have made here tells me I'm exaggerating my

pain, exercise will help me if I get off my butt and move.

If they had any idea, I wonder, how do you express your pain?

Do you bottle it up?

Do you put it on paper?

Do you scream at the top of your lungs?

Do you ask whatever higher power you follow why?

Do you hear the words " pain is pain " you get over it?

I do, every day, and that comes from my MOTHER.

Her mother has suffered Polymyalgia since way before she was

diagnosed, THIRTY years ago.

I was diagnosed with CFS eleven years ago in July, after I spent

nearly a month unable to eat more than chicken noodle soup and water,

unable to walk without help, and shaking like palm trees in a

category four hurricane. I was working full time at that point,

trying to stay standing because I couldn't stand to stay home. That

was in 1997, and just after that diagnosis, I moved. I haven't worked

since. Until just about two or three weeks ago, my memory had wiped

out that knowledge. I lived with this pain, not thinking about that

diagnosis, terrified to go to a doctor, and unable to afford to do

so. My poetry and writing, and my faith get me through. It's friends

like you all, who share with me your experience with medicine,

doctors, family, co-workers and more, who show me that I am not

alone. My pain may make me feel like I am, but I am not alone,

because I am not imagining what I am going through if there are 5000

of you or more right here sharing a similar experience. That alone is

solace. That alone is why I'm here.

A. Neff

February 22, 2008

How very true . We are not alone. We have each other even if it is on a

computer. I have read the estimate of fibromyalgia diagnoses in the U.S. alone

is 6-10 million. That is just in the states. How many might there be world

wide? It is a very life changing and silent illness that has never really been

discussed much until lately. We finally have some public service announcements

out there. Research I believe is finally getting more serious.

I don't know what I would do without this group here. It is the only place I

am understood.

I can't figure how anybody thinks that 6-10 million Americans are all full of

$- - t. The people who don't believe us just have not opened their minds to

even TRY to learn about this. If they did it might make them think. We come

from every walk of life. Rich, poor, young, old, different races and etc.

I understand you and what you go through when people tell you to " exercise "

and you will feel better. Hell, we don't even have the energy to hardly get out

of bed. And the pain is horrendous at times. (some people are in severe pain

ALL the time). Then people tend to judge us by others and their capabilities

with fibro. Just because one person manages to drag their butt to work does not

mean that someone else does not have it to a degree that they absolutely cannot

do it. I have heard that comment several times from people and it really gets

me. You know the comment " well, so and so has fibro and they still work and

keep house and exercise and ..... " etc. It is like saying " well so and so has

cancer just like you have cancer and they are not in that much pain " .... They

would never say that because they know that cancer is a real proven illness with

tests to prove it is there. ( I don't want cancer and I am very very sorry to

hear of anybody with it).... I am

trying to make a point. If it is on paper with some lab tests to back it or

something, the disease is real. If there is not an objective test and all they

can go by is the way we say we feel, it is not validated in most cases.

Shoot, I got off the topic. As for pain, I do tell people when I am hurting

sometimes. Some of them resond with some compassion and others just give the

blank " you don't look sick "

stare.

love and hugs,

Debra V.

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