RE: So tired of people asking what is that? --- fibromyalgia

[Guest guest]

Vent all you want to, hon. That is what we are here for. People are

so inconsiderate. I hope next time you work, they will tend to their

own business instead of grilling you about how you feel. Even

better, maybe for a change you could have a great night (it's about

time). That would help a lot I am sure. I have to admit, until I was

diagnosed, I knew nothing about fibro. Look how far it has come

though, I have not met a single doctor who has said it was in my head

or that I was faking. That is a huge leap right there. It will

happen, you'll see, I saw the fibro commercial a couple of nights

ago. If it's on tv it will brainwash people until they understand

what it is.

I am going to bed, I am so tired. I don't know why I have been doing

this to myself lately.

Love,

Annie

>

> Well, I am tired of not telling people what is wrong with me.

Especially on days like today at work when I have been in pain all

day and exhausted beyond belief. I have horrible dark circles under

my eyes and look like a pile of you know what. So instead of

saying " I just don't feel good " .... when they ask what is wrong I

say " It is called fibromyalgia " ...

> I said it to several people today and none of them had any clue

what the hell this is. So I explained to one person (after she said

it looked like I had two black eyes)... " It is a disease that affects

about 6 million peolple in the U.S. alone. It is chronic fatigue,

pain in the muscles ligaments and tendons and comes with a sleep

disorder " ... Of course she looked at me like I was an alien. But she

meant well.

> I am just so sick of this non informative society about this

cursed illness. What the heck do we have to do... go on top of a

mountain and shout together for someone to hear us and want to know

what it is??????? No, it might not kill us but it makes us feel like

we are dying. So why is it so insignificant that no one knows what

it is.

> I am just sick of dealing with the total ignorance of the

public. It is not their fault but it just is so aggravating. CAN WE

SHOUT!!!!!!!!!!!!!!!!!!!!!!!!

> Damn,

> ok anyway, there is my venting.

> hugs to the fibromites

> Debra V.

>

> __________________________________________________

>

[Guest guest]

Hi

I am tired too of the ignorance! But still I can't tell people. Yes, I know,

it's stupid. But I can't help having a social phobia. Could you may be call a

newspaper and ask if they can do an interview or at least an article? May be

some medical magazine would be interested or something like that? Then at least

the readers would know about the hell we are going through and may be recognize

some symptoms that they may have. But it's good that you at least told some of

your co-workers. Does your boss know?

I think I will print out the short story I wrote about fibro and tell the social

worker here to read it and then give me feedback. I am afraid of doing that but

I don't want to be silent either. She know I have something called fibromyalgia,

because I had to answer some questions on my first day here and I wrote it. But

she has totally ignored it. I would assume that she could at least ask me what

other symptoms I have. But not a single word. I hope that when she reads the

short story she will get an idea what I am going through, because I wrote my

story, I just called the young woman something else and removed certain details

from my past.

I am shivering cold and exhausted and it's still may be 5 and a half hour until

I'll be home. I don't want to look for jobs, but I must do it soon.

Gentle hugs to all.

--

debra van ness wrote:

Well, I am tired of not telling people what is wrong with me. Especially on

days like today at work when I have been in pain all day and exhausted beyond

belief. I have horrible dark circles under my eyes and look like a pile of you

know what. So instead of saying " I just don't feel good " .... when they ask

what is wrong I say " It is called fibromyalgia " ...

I said it to several people today and none of them had any clue what the hell

this is. So I explained to one person (after she said it looked like I had two

black eyes)... " It is a disease that affects about 6 million peolple in the U.S.

alone. It is chronic fatigue, pain in the muscles ligaments and tendons and

comes with a sleep disorder " ... Of course she looked at me like I was an alien.

But she meant well.

I am just so sick of this non informative society about this cursed illness.

What the heck do we have to do... go on top of a mountain and shout together for

someone to hear us and want to know what it is??????? No, it might not kill us

but it makes us feel like we are dying. So why is it so insignificant that no

one knows what it is.

I am just sick of dealing with the total ignorance of the public. It is not

their fault but it just is so aggravating. CAN WE SHOUT!!!!!!!!!!!!!!!!!!!!!!!!

Damn,

ok anyway, there is my venting.

hugs to the fibromites

Debra V.

__________________________________________________

[Guest guest]

I must be honest....I finally gave up. The heck with it. My family all

thinks what they want as do others. I don't try anymore. I agree people need to

be

educated but most of them don't listen or care anyway. This disease has

taken sooo much from me including jobs, family, " home " " marriage " , lifestyle,

hobbies, friends, my kids!, my grandkids! and my life period. Sooo little is

left...... and I feel like basically none of " me " is left.

Sorry for the downer. Tired. Period!

~Jennie

************************************** See what's new at http://www.aol.com

[Guest guest]

I like your answer, Tigger! Good one!

************************************** See what's new at http://www.aol.com

[Guest guest]

Thank you Annie. So true it is not their fault. I am a nurse and had been for

12 or13 years when I got really really sick with it. I did not know what it was

either. But I am just so angry that so many of us are in misery and 80% of the

population doesn't even know what it is or never even heard the word. I guess a

disease has to be fatal to be taken very serious or get much attention.

My daughter saw that commercial the other day too. I wish they would run it

more. And to be honest it doesn't even begin to tell all we go through but it

is a start.

Oh, I was also asked did I party too hard the night before. I look like I

have a hangover alot of the time.

Debra V.

missle49 wrote:

Vent all you want to, hon. That is what we are here for. People are

so inconsiderate. I hope next time you work, they will tend to their

own business instead of grilling you about how you feel. Even

better, maybe for a change you could have a great night (it's about

time). That would help a lot I am sure. I have to admit, until I was

diagnosed, I knew nothing about fibro. Look how far it has come

though, I have not met a single doctor who has said it was in my head

or that I was faking. That is a huge leap right there. It will

happen, you'll see, I saw the fibro commercial a couple of nights

ago. If it's on tv it will brainwash people until they understand

what it is.

I am going to bed, I am so tired. I don't know why I have been doing

this to myself lately.

Love,

Annie

>

> Well, I am tired of not telling people what is wrong with me.

Especially on days like today at work when I have been in pain all

day and exhausted beyond belief. I have horrible dark circles under

my eyes and look like a pile of you know what. So instead of

saying " I just don't feel good " .... when they ask what is wrong I

say " It is called fibromyalgia " ...

> I said it to several people today and none of them had any clue

what the hell this is. So I explained to one person (after she said

it looked like I had two black eyes)... " It is a disease that affects

about 6 million peolple in the U.S. alone. It is chronic fatigue,

pain in the muscles ligaments and tendons and comes with a sleep

disorder " ... Of course she looked at me like I was an alien. But she

meant well.

> I am just so sick of this non informative society about this

cursed illness. What the heck do we have to do... go on top of a

mountain and shout together for someone to hear us and want to know

what it is??????? No, it might not kill us but it makes us feel like

we are dying. So why is it so insignificant that no one knows what

it is.

> I am just sick of dealing with the total ignorance of the

public. It is not their fault but it just is so aggravating. CAN WE

SHOUT!!!!!!!!!!!!!!!!!!!!!!!!

> Damn,

> ok anyway, there is my venting.

> hugs to the fibromites

> Debra V.

>

> __________________________________________________

>

[Guest guest]

maybe a lot of the public not knowing is the people who suffer with

fibromyalgia. i know that for myself i never tell anyone the illnesses

that i suffer with, be it my asthma that is bothering me, my sciatica,

heidal hernia or the fibromyalgia. i never bother to inform anyone

about what the illnesses really are because they way i see it when

someone asks me " how are you today " they REALLY do not want to know,

they are just asking that out of habit. so my response all the time

is " I'm fine. " but in doing that i also know that i am contributing to

the prevalence of people being so totally unaware of the disease.

lisa n.

[Guest guest]

That would be a good idea. if we can just get this on awereness and that it

would help alot. Rox

So tired of people asking " what is that " ? --- fibromyalgia

Well, I am tired of not telling people what is wrong with me. Especially on days

like today at work when I have been in pain all day and exhausted beyond belief.

I have horrible dark circles under my eyes and look like a pile of you know

what. So instead of saying " I just don't feel good " .... when they ask what is

wrong I say " It is called fibromyalgia " ...

I said it to several people today and none of them had any clue what the hell

this is. So I explained to one person (after she said it looked like I had two

black eyes)... " It is a disease that affects about 6 million peolple in the U.S.

alone. It is chronic fatigue, pain in the muscles ligaments and tendons and

comes with a sleep disorder " ... Of course she looked at me like I was an alien.

But she meant well.

I am just so sick of this non informative society about this cursed illness.

What the heck do we have to do... go on top of a mountain and shout together for

someone to hear us and want to know what it is??????? No, it might not kill us

but it makes us feel like we are dying. So why is it so insignificant that no

one knows what it is.

I am just sick of dealing with the total ignorance of the public. It is not

their fault but it just is so aggravating. CAN WE SHOUT!!!!!!! !!!!!!!!!

!!!!!!!!

Damn,

ok anyway, there is my venting.

hugs to the fibromites

Debra V.

____________ _________ _________ _________ _________ __

[Guest guest]

I usually just tell people it's like arthritis of the muscles with extreme

fatigue and lots of insomnia.

Tigger (Ruth) in Rhode Island

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of missle49

Sent: Monday, October 22, 2007 1:19 AM

To: Fibromyalgia_Support_Group

Subject: Re: So tired of people asking " what is that " ? ---

fibromyalgia

Vent all you want to, hon. That is what we are here for. People are

so inconsiderate. I hope next time you work, they will tend to their

own business instead of grilling you about how you feel. Even

better, maybe for a change you could have a great night (it's about

time). That would help a lot I am sure. I have to admit, until I was

diagnosed, I knew nothing about fibro. Look how far it has come

though, I have not met a single doctor who has said it was in my head

or that I was faking. That is a huge leap right there. It will

happen, you'll see, I saw the fibro commercial a couple of nights

ago. If it's on tv it will brainwash people until they understand

what it is.

I am going to bed, I am so tired. I don't know why I have been doing

this to myself lately.

Love,

Annie

>

> Well, I am tired of not telling people what is wrong with me.

Especially on days like today at work when I have been in pain all

day and exhausted beyond belief. I have horrible dark circles under

my eyes and look like a pile of you know what. So instead of

saying " I just don't feel good " .... when they ask what is wrong I

say " It is called fibromyalgia " ...

> I said it to several people today and none of them had any clue

what the hell this is. So I explained to one person (after she said

it looked like I had two black eyes)... " It is a disease that affects

about 6 million peolple in the U.S. alone. It is chronic fatigue,

pain in the muscles ligaments and tendons and comes with a sleep

disorder " ... Of course she looked at me like I was an alien. But she

meant well.

> I am just so sick of this non informative society about this

cursed illness. What the heck do we have to do... go on top of a

mountain and shout together for someone to hear us and want to know

what it is??????? No, it might not kill us but it makes us feel like

we are dying. So why is it so insignificant that no one knows what

it is.

> I am just sick of dealing with the total ignorance of the

public. It is not their fault but it just is so aggravating. CAN WE

SHOUT!!!!!!!!!!!!!!!!!!!!!!!!

> Damn,

> ok anyway, there is my venting.

> hugs to the fibromites

> Debra V.

>

> __________________________________________________

>

[Guest guest]

i totally agree 100 percent. People think you are just complaining. I

have had a couple people that think I am just nuts. It gets frustrating!

[Guest guest]

Hi everyone. I have a question on this subject of fibromyalgia. I need to

share real information with my friends and family on this disease, instead

of saying it makes your body feel like you have the flu everywhere. I want

to be more specific so they will understand, and I am suffering from so much

mind fog that it's hard for me to orally express myself. So here comes my

question; does anyone know of a very down to earth, informative web site

that I could print and share with my loved ones. If I had cancer, I wouldn't

have a problem expressing info, if I had diabetes I wouldn't have a problem,

but as soon as you say fibromyalgia, well I'm sure I am not alone in trying

to explain myself. So if anyone could help me, I would be very grateful.

Just writing this email is taking me longer than I expected as I used to be

a champion speller and now I use spell check like a drug. I am scared and I

just do not know what is happening to me....huggs to you all...Ruthie

[Guest guest]

Hey Debra,

Maybe you should have. Or maybe you should give her some handouts and web sites

so she will know how much effort you are putting out and hope much support she

should be giving her sister in law and brother and their family.

I worked as long as I could. Now I can't but I sure wish I could. Making phone

calls for my family for appts doing the few things I can helps my self esteem.

On the days that my husband wants me to do more and I can't he complains and

latter apoligises because he knows how much I use to be able to do and now it is

so limited. I was where you are at several years ago and wish I were there

again.

Judy

---- debra van ness wrote:

> Thank you . Yes my boss knows that I have it. She made two comments...

" oh, my sister-in-law has that but she refuses to work. And she is hooked on

prescription drugs. She sleeps all day too and makes her husband make the

living " .

> Well, what can I say. " I force myself to drag in here because I will live

on the street if I don't " . ????????????

> Debra V.

>

> Svensson wrote:

> Hi

> I am tired too of the ignorance! But still I can't tell people. Yes, I know,

it's stupid. But I can't help having a social phobia. Could you may be call a

newspaper and ask if they can do an interview or at least an article? May be

some medical magazine would be interested or something like that? Then at least

the readers would know about the hell we are going through and may be recognize

some symptoms that they may have. But it's good that you at least told some of

your co-workers. Does your boss know?

>

> I think I will print out the short story I wrote about fibro and tell the

social worker here to read it and then give me feedback. I am afraid of doing

that but I don't want to be silent either. She know I have something called

fibromyalgia, because I had to answer some questions on my first day here and I

wrote it. But she has totally ignored it. I would assume that she could at least

ask me what other symptoms I have. But not a single word. I hope that when she

reads the short story she will get an idea what I am going through, because I

wrote my story, I just called the young woman something else and removed certain

details from my past.

>

> I am shivering cold and exhausted and it's still may be 5 and a half hour

until I'll be home. I don't want to look for jobs, but I must do it soon.

> Gentle hugs to all.

> --

>

> debra van ness wrote: Well, I am tired of not telling

people what is wrong with me. Especially on days like today at work when I have

been in pain all day and exhausted beyond belief. I have horrible dark circles

under my eyes and look like a pile of you know what. So instead of saying " I

just don't feel good " .... when they ask what is wrong I say " It is called

fibromyalgia " ...

> I said it to several people today and none of them had any clue what the hell

this is. So I explained to one person (after she said it looked like I had two

black eyes)... " It is a disease that affects about 6 million peolple in the U.S.

alone. It is chronic fatigue, pain in the muscles ligaments and tendons and

comes with a sleep disorder " ... Of course she looked at me like I was an alien.

But she meant well.

> I am just so sick of this non informative society about this cursed illness.

What the heck do we have to do... go on top of a mountain and shout together for

someone to hear us and want to know what it is??????? No, it might not kill us

but it makes us feel like we are dying. So why is it so insignificant that no

one knows what it is.

> I am just sick of dealing with the total ignorance of the public. It is not

their fault but it just is so aggravating. CAN WE SHOUT!!!!!!!!!!!!!!!!!!!!!!!!

> Damn,

> ok anyway, there is my venting.

> hugs to the fibromites

> Debra V.

>

> __________________________________________________

>