WE NEED people to speak out? LETS DO IT...

[Guest guest]

I just wrote a response to 's comments. He is right on the money. What

can we do in the future to put together some kind of awareness type operation

for Fibromyalgia??? The commercials are short and are a beginning but do no

justice. And just think, Fibromyalgia Awarenss day is coming up shortly. But

do you think anyone will hear about it except for a very few? The answer is NO.

It won't be advertised and no one will know it except those of us who have it.

I am just stating how this disease gets no coverage or gets the WRONG coverage.

NOW, THAT SAID, we have a very diverse group of people here with knowledge and

creativity from every walk of life. We have some very damn SMART people here

too with alot of intelligence and education backgrounds. How do we come

together in some way to figure out how to get the REAL word out about fibro? I

will help any way I can. If I could I would talk to a crowd of a million about

this disease. I am a registered nurse who had years of experience before fibro

took ahold of me. I DID NOT even know what fibromyalgia was until I got very

ill with it. I had not even heard the word " FIBROMYALGIA " . What does that tell

us? The disease is behind the lines, it is discounted, it is NOT taught in

nursing schools. It was not taught in medical school either until maybe the

very recent time.

Come on people. Help me. Is there any way we can ban together and come up with

something to educate people about this? I mean the real thing, not the stupid

articles that make us look like hypochondriacs and lunatics. Not the STUPID

articles that say " It does NOT get worse " .

That said, it will not happen overnight. But think together and lets at least

try to come up with something. (We may not be able to, but lets think on it)

love and hugs to my group of friends,

Debra V.

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

sure, email larry king live, get a couple people with fibro and a

couple docs who treat it and beleive in it, get some research

together to take to the show, be interviewed on national tv.

email the national news stations, the today show, evening new

stations, the newspapers, tell them you want to see more valid info

about fibro and commentary from docs who treat fibro, on their shows

and articles in the papers.

is there a contact link on the fibro websites? ask them how to get

more visibility for the disease and legitimate medical commentary.

too bad the fibro sites/national groups can't pay for those huge

highway billboards to advertise that fibro is real, fibro hope, does

someone in your family have fibro, etc.

take care,

marg

>

> I just wrote a response to 's comments. He is right on the

money. What can we do in the future to put together some kind of

awareness type operation for Fibromyalgia??? The commercials are

short and are a beginning but do no justice. And just think,

Fibromyalgia Awarenss day is coming up shortly. But do you think

anyone will hear about it except for a very few? The answer is NO.

It won't be advertised and no one will know it except those of us who

have it. I am just stating how this disease gets no coverage or gets

the WRONG coverage.

>

> NOW, THAT SAID, we have a very diverse group of people here with

knowledge and creativity from every walk of life. We have some very

damn SMART people here too with alot of intelligence and education

backgrounds. How do we come together in some way to figure out how

to get the REAL word out about fibro? I will help any way I can. If

I could I would talk to a crowd of a million about this disease. I

am a registered nurse who had years of experience before fibro took

ahold of me. I DID NOT even know what fibromyalgia was until I got

very ill with it. I had not even heard the word " FIBROMYALGIA " .

What does that tell us? The disease is behind the lines, it is

discounted, it is NOT taught in nursing schools. It was not taught

in medical school either until maybe the very recent time.

>

> Come on people. Help me. Is there any way we can ban together and

come up with something to educate people about this? I mean the real

thing, not the stupid articles that make us look like hypochondriacs

and lunatics. Not the STUPID articles that say " It does NOT get

worse " .

>

> That said, it will not happen overnight. But think together and

lets at least try to come up with something. (We may not be able to,

but lets think on it)

>

> love and hugs to my group of friends,

> Debra V.

[Guest guest]

I agree we need to do it somehow.Who is willing to speak up? We will need more

than one to speak, as we all feel different, and we need to get organize and

thoughts and ideas pulled together in some kind of format.We need  a lot media

attn; as well as the foundation to reach out and help us.It is even sad that

some of the experimental groups only that new patients who doesnt have a dr. all

ready and that is sad cause some of us could tell them alot.each day is a new

day and new symptoms or the same ones attacking a different part of our bodies.I

am willing to do what I can  very little finaces but a lot of time.Della

Re: WE NEED people to speak out? LETS DO IT...

sure, email larry king live, get a couple people with fibro and a

couple docs who treat it and beleive in it, get some research

together to take to the show, be interviewed on national tv.

email the national news stations, the today show, evening new

stations, the newspapers, tell them you want to see more valid info

about fibro and commentary from docs who treat fibro, on their shows

and articles in the papers.

is there a contact link on the fibro websites? ask them how to get

more visibility for the disease and legitimate medical commentary.

too bad the fibro sites/national groups can't pay for those huge

highway billboards to advertise that fibro is real, fibro hope, does

someone in your family have fibro, etc.

take care,

marg

>

> I just wrote a response to 's comments. He is right on the

money. What can we do in the future to put together some kind of

awareness type operation for Fibromyalgia? ?? The commercials are

short and are a beginning but do no justice. And just think,

Fibromyalgia Awarenss day is coming up shortly. But do you think

anyone will hear about it except for a very few? The answer is NO.

It won't be advertised and no one will know it except those of us who

have it. I am just stating how this disease gets no coverage or gets

the WRONG coverage.

>

> NOW, THAT SAID, we have a very diverse group of people here with

knowledge and creativity from every walk of life. We have some very

damn SMART people here too with alot of intelligence and education

backgrounds. How do we come together in some way to figure out how

to get the REAL word out about fibro? I will help any way I can. If

I could I would talk to a crowd of a million about this disease. I

am a registered nurse who had years of experience before fibro took

ahold of me. I DID NOT even know what fibromyalgia was until I got

very ill with it. I had not even heard the word " FIBROMYALGIA " .

What does that tell us? The disease is behind the lines, it is

discounted, it is NOT taught in nursing schools. It was not taught

in medical school either until maybe the very recent time.

>

> Come on people. Help me. Is there any way we can ban together and

come up with something to educate people about this? I mean the real

thing, not the stupid articles that make us look like hypochondriacs

and lunatics. Not the STUPID articles that say " It does NOT get

worse " .

>

> That said, it will not happen overnight. But think together and

lets at least try to come up with something. (We may not be able to,

but lets think on it)

>

> love and hugs to my group of friends,

> Debra V.

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo..com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Here's some suggestions Debra:

Set up a website run by people who suffer with it

Make up a flyer/brochure and send it out to as many doctors (ALL

kinds of doctors) as you can think of

Write an article about the disease and send it to as many newspapers

and magazines as you can think of submitting it as a freelance

writer. Send it to the health editor of the newspapers. Start out

with small local newspapers and work from there. Also, work with any

local magazines that are pubished and there are definately some local

magazines (ANY type!)

Start a local support group and organize a booth at local events

(i.e, festivals, health events, etc)

Write to your local radio and TV stations and urge them to talk about

fibromyalgia on awareness day.

If any local TV or radio station has a " health " spot write and

encourage them to interview doctors/patients who suffer from

fibromyalgia.

Talk to your local government and have them do a recognition of

fibromaylgia awareness day city wide and get it in the paper.

That's all I can think of right now

N.

[Guest guest]

Debra,

To begin with...I had no idea there was a Fibromaygia awareness day. When is

it???? What is the color of pain and exhaustion? We could all wear it that day.

I once said we need a celebrity to come forward with it and boom, they would be

having fundraisers all over the place. Let us all think....it's got to start

somewhere, why not us.

WE NEED people to speak out? LETS DO IT...

I just wrote a response to 's comments. He is right on the money. What

can we do in the future to put together some kind of awareness type operation

for Fibromyalgia??? The commercials are short and are a beginning but do no

justice. And just think, Fibromyalgia Awarenss day is coming up shortly. But do

you think anyone will hear about it except for a very few? The answer is NO. It

won't be advertised and no one will know it except those of us who have it. I am

just stating how this disease gets no coverage or gets the WRONG coverage.

NOW, THAT SAID, we have a very diverse group of people here with knowledge and

creativity from every walk of life. We have some very damn SMART people here too

with alot of intelligence and education backgrounds. How do we come together in

some way to figure out how to get the REAL word out about fibro? I will help any

way I can. If I could I would talk to a crowd of a million about this disease. I

am a registered nurse who had years of experience before fibro took ahold of me.

I DID NOT even know what fibromyalgia was until I got very ill with it. I had

not even heard the word " FIBROMYALGIA " . What does that tell us? The disease is

behind the lines, it is discounted, it is NOT taught in nursing schools. It was

not taught in medical school either until maybe the very recent time.

Come on people. Help me. Is there any way we can ban together and come up with

something to educate people about this? I mean the real thing, not the stupid

articles that make us look like hypochondriacs and lunatics. Not the STUPID

articles that say " It does NOT get worse " .

That said, it will not happen overnight. But think together and lets at least

try to come up with something. (We may not be able to, but lets think on it)

love and hugs to my group of friends,

Debra V.

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

That is a good idea Marg. I know all the local news channels have a " for your

health " type segment. It sure wouldn't hurt for us to contact them all and

suggest having a piece on it. I'll do it here in Detroit area!!

Re: WE NEED people to speak out? LETS DO IT...

sure, email larry king live, get a couple people with fibro and a

couple docs who treat it and beleive in it, get some research

together to take to the show, be interviewed on national tv.

email the national news stations, the today show, evening new

stations, the newspapers, tell them you want to see more valid info

about fibro and commentary from docs who treat fibro, on their shows

and articles in the papers.

is there a contact link on the fibro websites? ask them how to get

more visibility for the disease and legitimate medical commentary.

too bad the fibro sites/national groups can't pay for those huge

highway billboards to advertise that fibro is real, fibro hope, does

someone in your family have fibro, etc.

take care,

marg

>

> I just wrote a response to 's comments. He is right on the

money. What can we do in the future to put together some kind of

awareness type operation for Fibromyalgia??? The commercials are

short and are a beginning but do no justice. And just think,

Fibromyalgia Awarenss day is coming up shortly. But do you think

anyone will hear about it except for a very few? The answer is NO.

It won't be advertised and no one will know it except those of us who

have it. I am just stating how this disease gets no coverage or gets

the WRONG coverage.

>

> NOW, THAT SAID, we have a very diverse group of people here with

knowledge and creativity from every walk of life. We have some very

damn SMART people here too with alot of intelligence and education

backgrounds. How do we come together in some way to figure out how

to get the REAL word out about fibro? I will help any way I can. If

I could I would talk to a crowd of a million about this disease. I

am a registered nurse who had years of experience before fibro took

ahold of me. I DID NOT even know what fibromyalgia was until I got

very ill with it. I had not even heard the word " FIBROMYALGIA " .

What does that tell us? The disease is behind the lines, it is

discounted, it is NOT taught in nursing schools. It was not taught

in medical school either until maybe the very recent time.

>

> Come on people. Help me. Is there any way we can ban together and

come up with something to educate people about this? I mean the real

thing, not the stupid articles that make us look like hypochondriacs

and lunatics. Not the STUPID articles that say " It does NOT get

worse " .

>

> That said, it will not happen overnight. But think together and

lets at least try to come up with something. (We may not be able to,

but lets think on it)

>

> love and hugs to my group of friends,

> Debra V.

[Guest guest]

Yeah, when is Fibro Day? I think the colour of pain and exhaustion is taupe.

Cassandra

>

> Debra,

> To begin with...I had no idea there was a Fibromaygia awareness day. When is

it????

What is the color of pain and exhaustion? We could all wear it that day. I once

said we need

a celebrity to come forward with it and boom, they would be having fundraisers

all over

the place. Let us all think....it's got to start somewhere, why not us.

>

> WE NEED people to speak out? LETS DO IT...

>

>

> I just wrote a response to 's comments. He is right on the money. What

can we do

in the future to put together some kind of awareness type operation for

Fibromyalgia???

The commercials are short and are a beginning but do no justice. And just think,

Fibromyalgia Awarenss day is coming up shortly. But do you think anyone will

hear about

it except for a very few? The answer is NO. It won't be advertised and no one

will know it

except those of us who have it. I am just stating how this disease gets no

coverage or gets

the WRONG coverage.

>

> NOW, THAT SAID, we have a very diverse group of people here with knowledge

and

creativity from every walk of life. We have some very damn SMART people here too

with

alot of intelligence and education backgrounds. How do we come together in some

way to

figure out how to get the REAL word out about fibro? I will help any way I can.

If I could I

would talk to a crowd of a million about this disease. I am a registered nurse

who had

years of experience before fibro took ahold of me. I DID NOT even know what

fibromyalgia

was until I got very ill with it. I had not even heard the word " FIBROMYALGIA " .

What does

that tell us? The disease is behind the lines, it is discounted, it is NOT

taught in nursing

schools. It was not taught in medical school either until maybe the very recent

time.

>

> Come on people. Help me. Is there any way we can ban together and come up

with

something to educate people about this? I mean the real thing, not the stupid

articles that

make us look like hypochondriacs and lunatics. Not the STUPID articles that say

" It does

NOT get worse " .

>

> That said, it will not happen overnight. But think together and lets at

least try to come

up with something. (We may not be able to, but lets think on it)

>

> love and hugs to my group of friends,

> Debra V.

>

> __________________________________________________________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;

_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

>

>

>

>

[Guest guest]

Our Group logo:

" Stamp Out Fibromyalgia "

A big postage stamp with the letters FM in the middle, reflecting the

PenPal project and the self-support we give each other.

[Guest guest]

You really are a genius....I love it...

Re: WE NEED people to speak out? LETS DO IT...

Our Group logo:

" Stamp Out Fibromyalgia "

A big postage stamp with the letters FM in the middle, reflecting the

PenPal project and the self-support we give each other.

[Guest guest]

Here's a few links for Fibromyalgia Awareness Day:

About.com

http://chronicfatigue.about.com/b/2008/04/14/fibromyalgia-awareness-day-is-almos\

t-here.htm

National Fibromyalgia Association:

http://www.fmaware.org/site/PageServer?pagename=community_awarenessDay

Also Fibromyalgia Advocacy

[Guest guest]

I believe it is May 14th. I ordered a fibro bracelet off the net to wear. She

donates 10% to the FM site. Pricey but her work is good if anyone is interested

hugs

debra van ness ladybug75901@...> wrote:

I just wrote a response to 's comments. He is right on the money. What

can we do in the future to put together some kind of awareness type operation

for Fibromyalgia??? The commercials are short and are a beginning but do no

justice. And just think, Fibromyalgia Awarenss day is coming up shortly. But do

you think anyone will hear about it except for a very few? The answer is NO. It

won't be advertised and no one will know it except those of us who have it. I am

just stating how this disease gets no coverage or gets the WRONG coverage.

NOW, THAT SAID, we have a very diverse group of people here with knowledge and

creativity from every walk of life. We have some very damn SMART people here too

with alot of intelligence and education backgrounds. How do we come together in

some way to figure out how to get the REAL word out about fibro? I will help any

way I can. If I could I would talk to a crowd of a million about this disease. I

am a registered nurse who had years of experience before fibro took ahold of me.

I DID NOT even know what fibromyalgia was until I got very ill with it. I had

not even heard the word " FIBROMYALGIA " . What does that tell us? The disease is

behind the lines, it is discounted, it is NOT taught in nursing schools. It was

not taught in medical school either until maybe the very recent time.

Come on people. Help me. Is there any way we can ban together and come up with

something to educate people about this? I mean the real thing, not the stupid

articles that make us look like hypochondriacs and lunatics. Not the STUPID

articles that say " It does NOT get worse " .

That said, it will not happen overnight. But think together and lets at least

try to come up with something. (We may not be able to, but lets think on it)

love and hugs to my group of friends,

Debra V.

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

------------------------------------

1. While it is wonderful to share our experiences with everyone on the list as

to what treatments do and don't work for us, pls always check with your dr. Some

treatments are dangerous when given along with other meds as well as to certain

health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't be

afraid to ask for help. It is the first step to trying to make that situation

better.

3. To unsubscribe the e-mail is:

Fibromyalgia_Support_Group-unsubscribe

4. Also, it is not uncommon for more than one member to be feeling bad at the

same time when it comes to flares and b/c of that potentially take something

another member says the wrong way. And that includes the things that one member

may find funny (even if it's laughing at fibro itself) even though we who deal

with illness whether one such as fibro or multiple illnesses try to keep a sense

of humor.

5. Pls let's be gentle with each other, and if you are having a bad day pls let

us know so that we can do our best to offer our support.

Have a nice day everyone.

[Guest guest]

Hi! I am a lurker here for the mostpart, but on this post, I have to

agree.

A bit about me, then..my idea, if it is alright.

I am a 44 year old woman, with syndrome X(pre-diabetes, metabolic

disorder). I have finally been diagnosed with FM by several doctors,

that finally listened to me. Others, wanted to treat me for pulled or

sprained muscles, five me flexiril(sp), and let me be done. As we all

know, that does not help or ease the pain and discomfort at all. I

have been on Cymbalta for years for depression/anxiety, and have been

on Lyrica with it for about three months now. 100mg 3 times a day,

and I suspect that will increase soon.

My kids are grown,and I married a wonderful man last year. 7-7-07.

Have been married before and finally found one that is decent to me,

and considerate.

My pain, although it is all day everyday, I have to say..it really

gets worse when I try to lay down to rest. OMG--it feels as if my

muscles are twisting around every bone in my body, and shrinking to

boot. My face even hurts. Needless to say, I am awake quite late, as

I cannot rest thru it. Thinking that is what explains my being tired

all the time. And the foggy way my thinking is...but, both could just

be this damned beast that is taking away my livlihood.

Now..the speaking out..

I was reading, and thinking..and maybe, we should get to these major

personalities as a group. Hell, all of them..Larry King, Oprah..news

organizations..and..what about dear old Dr. Gupta on CNN?

Someone, that has the knowledge..and appropriate wording..should..I

think..write out a petition before awareness day. WE CAN ALL SIGN

IT-family and friends too..and then..email it to those places..and get

the word out. And we should make sure they all know..that we expect

more than a 30 sec. commercial for a drug manufacturer. We need to

get attention, and we should all have the respect of normal

individuals with lives to live even tho we have no cuts or bruises.

Oh. I apologize for the swearing..but, sometimes, I just cannot

emphasize my communitive skills without a " bleep " here and there. I

by no means want to offend not one of you.

Soft Hugs to ya all (from Knoxville, TN)

> >

> > I just wrote a response to 's comments. He is right on the

> money. What can we do in the future to put together some kind of

> awareness type operation for Fibromyalgia? ?? The commercials are

> short and are a beginning but do no justice. And just think,

> Fibromyalgia Awarenss day is coming up shortly. But do you think

> anyone will hear about it except for a very few? The answer is NO.

> It won't be advertised and no one will know it except those of us who

> have it. I am just stating how this disease gets no coverage or gets

> the WRONG coverage.

> >

> > NOW, THAT SAID, we have a very diverse group of people here with

> knowledge and creativity from every walk of life. We have some very

> damn SMART people here too with alot of intelligence and education

> backgrounds. How do we come together in some way to figure out how

> to get the REAL word out about fibro? I will help any way I can. If

> I could I would talk to a crowd of a million about this disease. I

> am a registered nurse who had years of experience before fibro took

> ahold of me. I DID NOT even know what fibromyalgia was until I got

> very ill with it. I had not even heard the word " FIBROMYALGIA " .

> What does that tell us? The disease is behind the lines, it is

> discounted, it is NOT taught in nursing schools. It was not taught

> in medical school either until maybe the very recent time.

> >

> > Come on people. Help me. Is there any way we can ban together and

> come up with something to educate people about this? I mean the real

> thing, not the stupid articles that make us look like hypochondriacs

> and lunatics. Not the STUPID articles that say " It does NOT get

> worse " .

> >

> > That said, it will not happen overnight. But think together and

> lets at least try to come up with something. (We may not be able to,

> but lets think on it)

> >

> > love and hugs to my group of friends,

> > Debra V.

>

>

>

>

>

________________________________________________________________________________\

____

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo..com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

>

[Guest guest]

Too bad they could not do a commercial that has a theme like " Fibromyalgia

effects me and me and me and me " Showing different people each time saying " me "

So that the public can see that REAL people have this. Then a narrator explains

the highlights of the disease. Just an idea.

Blessings

Penny, Illinois

Penny s

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Yes fibro day is the 14 th of May ,i think in my fog brain it`s been going

on since 2002, i got a t-shirt ,with a bull dog that said " don`t bother me

,i am in a fog " have to see if it is still around ,what site did you get

your bracelet from , ?

Ethel

Behold the turtle ,

he who makes slow progress wins the race !

Re: WE NEED people to speak out? LETS DO IT...

>I believe it is May 14th. I ordered a fibro bracelet off the net to wear.

>She donates 10% to the FM site. Pricey but her work is good if anyone is

>interested

> hugs

>

>

>

> debra van ness ladybug75901@...> wrote:

> I just wrote a response to 's comments. He is right on the money.

> What can we do in the future to put together some kind of awareness type

> operation for Fibromyalgia??? The commercials are short and are a

> beginning but do no justice. And just think, Fibromyalgia Awarenss day is

> coming up shortly. But do you think anyone will hear about it except for a

> very few? The answer is NO. It won't be advertised and no one will know it

> except those of us who have it. I am just stating how this disease gets no

> coverage or gets the WRONG coverage.

>

> NOW, THAT SAID, we have a very diverse group of people here with knowledge

> and creativity from every walk of life. We have some very damn SMART

> people here too with alot of intelligence and education backgrounds. How

> do we come together in some way to figure out how to get the REAL word out

> about fibro? I will help any way I can. If I could I would talk to a crowd

> of a million about this disease. I am a registered nurse who had years of

> experience before fibro took ahold of me. I DID NOT even know what

> fibromyalgia was until I got very ill with it. I had not even heard the

> word " FIBROMYALGIA " . What does that tell us? The disease is behind the

> lines, it is discounted, it is NOT taught in nursing schools. It was not

> taught in medical school either until maybe the very recent time.

>

> Come on people. Help me. Is there any way we can ban together and come up

> with something to educate people about this? I mean the real thing, not

> the stupid articles that make us look like hypochondriacs and lunatics.

> Not the STUPID articles that say " It does NOT get worse " .

>

> That said, it will not happen overnight. But think together and lets at

> least try to come up with something. (We may not be able to, but lets

> think on it)

>

> love and hugs to my group of friends,

> Debra V.

>

>

>

________________________________________________________________________________\

____

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

> ------------------------------------

>

> 1. While it is wonderful to share our experiences with everyone on the

> list as to what treatments do and don't work for us, pls always check with

> your dr. Some treatments are dangerous when given along with other meds as

> well as to certain health conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't matter what it is) pls

> don't be afraid to ask for help. It is the first step to trying to make

> that situation better.

>

> 3. To unsubscribe the e-mail is:

> Fibromyalgia_Support_Group-unsubscribe

>

> 4. Also, it is not uncommon for more than one member to be feeling bad at

> the same time when it comes to flares and b/c of that potentially take

> something another member says the wrong way. And that includes the things

> that one member may find funny (even if it's laughing at fibro itself)

> even though we who deal with illness whether one such as fibro or multiple

> illnesses try to keep a sense of humor.

>

> 5. Pls let's be gentle with each other, and if you are having a bad day

> pls let us know so that we can do our best to offer our support.

>

> Have a nice day everyone.

>

[Guest guest]

On the Fibro Association Home Page it says it's May 10th??? Maybe I missed read

it!

Re: WE NEED people to speak out? LETS DO IT...

>I believe it is May 14th. I ordered a fibro bracelet off the net to wear.

>She donates 10% to the FM site. Pricey but her work is good if anyone is

>interested

> hugs

>

>

>

> debra van ness wrote:

> I just wrote a response to 's comments. He is right on the money.

> What can we do in the future to put together some kind of awareness type

> operation for Fibromyalgia? ?? The commercials are short and are a

> beginning but do no justice. And just think, Fibromyalgia Awarenss day is

> coming up shortly. But do you think anyone will hear about it except for a

> very few? The answer is NO. It won't be advertised and no one will know it

> except those of us who have it. I am just stating how this disease gets no

> coverage or gets the WRONG coverage.

>

> NOW, THAT SAID, we have a very diverse group of people here with knowledge

> and creativity from every walk of life. We have some very damn SMART

> people here too with alot of intelligence and education backgrounds. How

> do we come together in some way to figure out how to get the REAL word out

> about fibro? I will help any way I can. If I could I would talk to a crowd

> of a million about this disease. I am a registered nurse who had years of

> experience before fibro took ahold of me. I DID NOT even know what

> fibromyalgia was until I got very ill with it. I had not even heard the

> word " FIBROMYALGIA " . What does that tell us? The disease is behind the

> lines, it is discounted, it is NOT taught in nursing schools. It was not

> taught in medical school either until maybe the very recent time.

>

> Come on people. Help me. Is there any way we can ban together and come up

> with something to educate people about this? I mean the real thing, not

> the stupid articles that make us look like hypochondriacs and lunatics.

> Not the STUPID articles that say " It does NOT get worse " .

>

> That said, it will not happen overnight. But think together and lets at

> least try to come up with something. (We may not be able to, but lets

> think on it)

>

> love and hugs to my group of friends,

> Debra V.

>

>

> ____________ _________ _________ _________ _________ _________ _

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

> http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

>

> ------------ --------- --------- ------

>

> 1. While it is wonderful to share our experiences with everyone on the

> list as to what treatments do and don't work for us, pls always check with

> your dr. Some treatments are dangerous when given along with other meds as

> well as to certain health conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't matter what it is) pls

> don't be afraid to ask for help. It is the first step to trying to make

> that situation better.

>

> 3. To unsubscribe the e-mail is:

> Fibromyalgia_ Support_Group- unsubscribe@ yahoogroups. com

>

> 4. Also, it is not uncommon for more than one member to be feeling bad at

> the same time when it comes to flares and b/c of that potentially take

> something another member says the wrong way. And that includes the things

> that one member may find funny (even if it's laughing at fibro itself)

> even though we who deal with illness whether one such as fibro or multiple

> illnesses try to keep a sense of humor.

>

> 5. Pls let's be gentle with each other, and if you are having a bad day

> pls let us know so that we can do our best to offer our support.

>

> Have a nice day everyone.

>

[Guest guest]

Wow - you have many great ideas!

Jeanne in WI

Here's some suggestions Debra:

Set up a website run by people who suffer with it

Make up a flyer/brochure and send it out to as many doctors (ALL kinds of

doctors) as you can think of

Write an article about the disease and send it to as many newspapers and

magazines as you can think of submitting it as a freelance writer. Send it to

the health editor of the newspapers. Start out with small local newspapers and

work from there. Also, work with any

local magazines that are pubished and there are definately some local

magazines (ANY type!)

Start a local support group and organize a booth at local events (i.e,

festivals, health events, etc)

Write to your local radio and TV stations and urge them to talk about

fibromyalgia on awareness day.

If any local TV or radio station has a " health " spot write and encourage them

to interview doctors/patients who suffer from fibromyalgia.

Talk to your local government and have them do a recognition of fibromaylgia

awareness day city wide and get it in the paper.

That's all I can think of right now

N.

[Guest guest]

I have a television show interested in story about chronic pain. It has been

sent to the producers. It is a show with Leeza Gibbons. I am awaiting an

answer. It would be great to have a bunch of us on the show to tell our

stories.

Annie in TN

Jeanne and Dave djgraves9497@...> wrote:

Wow - you have many great ideas!

Jeanne in WI

Here's some suggestions Debra:

Set up a website run by people who suffer with it

Make up a flyer/brochure and send it out to as many doctors (ALL kinds of

doctors) as you can think of

Write an article about the disease and send it to as many newspapers and

magazines as you can think of submitting it as a freelance writer. Send it to

the health editor of the newspapers. Start out with small local newspapers and

work from there. Also, work with any

local magazines that are pubished and there are definately some local magazines

(ANY type!)

Start a local support group and organize a booth at local events (i.e,

festivals, health events, etc)

Write to your local radio and TV stations and urge them to talk about

fibromyalgia on awareness day.

If any local TV or radio station has a " health " spot write and encourage them to

interview doctors/patients who suffer from fibromyalgia.

Talk to your local government and have them do a recognition of fibromaylgia

awareness day city wide and get it in the paper.

That's all I can think of right now

N.

[Guest guest]

The Fibro bracelet (much like the Breast Cancer Awareness, etc.) is

purple and the National Fibro Awareness group sells them so many in a

bag. I gave my great nieces one or two to wear. I also have the

fibro pen which is a butterfly. There are several more things for

sale on the site; it's much like the Komen site, which I want to log

back into as there are several pretty flower pots for Mother's day

and since I lost one aunt to the disease, and know a number of other

people who have that disease, I want to order some! And I just

realized, I sent money for my cousin to do the relay for life, I

guess we could find a way to raise local awareness about fibro ---

don't know how many of us could do a relay that lasted as long as the

one she did! But she certainly had gotten interesting in working for

the Breast Cancer Awareness group, her mother would be so proud of

what she did! Especially after the pain my aunt lived with until

they finally got her to the hospital and I reported my uncle for

elder abuse! Even then she was still begging Grandma for help ---

" Mommy, help me, help me, Mommy! " Even then uncle told her a few

times that Grandma was dead --- I say Grandma was waiting for her and

had her arms wide open to offer her the comfort she so badly needed,

when she took that last breathe!

> >

> > Debra,

> > To begin with...I had no idea there was a Fibromaygia awareness

day. When is it????

> What is the color of pain and exhaustion? We could all wear it that

day. I once said we need

> a celebrity to come forward with it and boom, they would be having

fundraisers all over

> the place. Let us all think....it's got to start somewhere, why not

us.

> >

> > WE NEED people to speak out? LETS DO IT...

> >

> >

> > I just wrote a response to 's comments. He is right on the

money. What can we do

> in the future to put together some kind of awareness type operation

for Fibromyalgia???

> The commercials are short and are a beginning but do no justice.

And just think,

> Fibromyalgia Awarenss day is coming up shortly. But do you think

anyone will hear about

> it except for a very few? The answer is NO. It won't be advertised

and no one will know it

> except those of us who have it. I am just stating how this disease

gets no coverage or gets

> the WRONG coverage.

> >

> > NOW, THAT SAID, we have a very diverse group of people here

with knowledge and

> creativity from every walk of life. We have some very damn SMART

people here too with

> alot of intelligence and education backgrounds. How do we come

together in some way to

> figure out how to get the REAL word out about fibro? I will help

any way I can. If I could I

> would talk to a crowd of a million about this disease. I am a

registered nurse who had

> years of experience before fibro took ahold of me. I DID NOT even

know what fibromyalgia

> was until I got very ill with it. I had not even heard the

word " FIBROMYALGIA " . What does

> that tell us? The disease is behind the lines, it is discounted, it

is NOT taught in nursing

> schools. It was not taught in medical school either until maybe the

very recent time.

> >

> > Come on people. Help me. Is there any way we can ban together

and come up with

> something to educate people about this? I mean the real thing, not

the stupid articles that

> make us look like hypochondriacs and lunatics. Not the STUPID

articles that say " It does

> NOT get worse " .

> >

> > That said, it will not happen overnight. But think together and

lets at least try to come

> up with something. (We may not be able to, but lets think on it)

> >

> > love and hugs to my group of friends,

> > Debra V.

> >

> > __________________________________________________________

> > Be a better friend, newshound, and

> > know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;

> _ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

> >

> >

> >

> >

> >

[Guest guest]

Wow, Annie that is awesome...let us know.

Re: Re: WE NEED people to speak out? LETS DO IT...

I have a television show interested in story about chronic pain. It has been

sent to the producers. It is a show with Leeza Gibbons. I am awaiting an answer.

It would be great to have a bunch of us on the show to tell our stories.

Annie in TN

Jeanne and Dave djgraves9497@...> wrote:

Wow - you have many great ideas!

Jeanne in WI

Here's some suggestions Debra:

Set up a website run by people who suffer with it

Make up a flyer/brochure and send it out to as many doctors (ALL kinds of

doctors) as you can think of

Write an article about the disease and send it to as many newspapers and

magazines as you can think of submitting it as a freelance writer. Send it to

the health editor of the newspapers. Start out with small local newspapers and

work from there. Also, work with any

local magazines that are pubished and there are definately some local

magazines (ANY type!)

Start a local support group and organize a booth at local events (i.e,

festivals, health events, etc)

Write to your local radio and TV stations and urge them to talk about

fibromyalgia on awareness day.

If any local TV or radio station has a " health " spot write and encourage them

to interview doctors/patients who suffer from fibromyalgia.

Talk to your local government and have them do a recognition of fibromaylgia

awareness day city wide and get it in the paper.

That's all I can think of right now

N.

[Guest guest]

According to the National Fibromyalgia Association website

Fibromyalgiaa Awareness Day is May 12. Have they changed it?

N.

>

> Yes fibro day is the 14 th of May ,

[Guest guest]

Hi !!

First, howdy neighbor!! I live in Nashville, TN. Thanks for telling your

story. I also like your idea. We just have to get our heads together (gently)

and see what we can come up with.

Hugs,

annie

magicaldream411 magicaldream411@...> wrote:

Hi! I am a lurker here for the mostpart, but on this post, I have to

agree.

A bit about me, then..my idea, if it is alright.

I am a 44 year old woman, with syndrome X(pre-diabetes, metabolic

disorder). I have finally been diagnosed with FM by several doctors,

that finally listened to me. Others, wanted to treat me for pulled or

sprained muscles, five me flexiril(sp), and let me be done. As we all

know, that does not help or ease the pain and discomfort at all. I

have been on Cymbalta for years for depression/anxiety, and have been

on Lyrica with it for about three months now. 100mg 3 times a day,

and I suspect that will increase soon.

My kids are grown,and I married a wonderful man last year. 7-7-07.

Have been married before and finally found one that is decent to me,

and considerate.

My pain, although it is all day everyday, I have to say..it really

gets worse when I try to lay down to rest. OMG--it feels as if my

muscles are twisting around every bone in my body, and shrinking to

boot. My face even hurts. Needless to say, I am awake quite late, as

I cannot rest thru it. Thinking that is what explains my being tired

all the time. And the foggy way my thinking is...but, both could just

be this damned beast that is taking away my livlihood.

Now..the speaking out..

I was reading, and thinking..and maybe, we should get to these major

personalities as a group. Hell, all of them..Larry King, Oprah..news

organizations..and..what about dear old Dr. Gupta on CNN?

Someone, that has the knowledge..and appropriate wording..should..I

think..write out a petition before awareness day. WE CAN ALL SIGN

IT-family and friends too..and then..email it to those places..and get

the word out. And we should make sure they all know..that we expect

more than a 30 sec. commercial for a drug manufacturer. We need to

get attention, and we should all have the respect of normal

individuals with lives to live even tho we have no cuts or bruises.

Oh. I apologize for the swearing..but, sometimes, I just cannot

emphasize my communitive skills without a " bleep " here and there. I

by no means want to offend not one of you.

Soft Hugs to ya all (from Knoxville, TN)

>

> I agree we need to do it somehow.Who is willing to speak up? We will

need more than one to speak, as we all feel different, and we need to

get organize and thoughts and ideas pulled together in some kind of

format.We need a lot media attn; as well as the foundation to reach

out and help us.Della

>

>Reply (via web post) | Start a new topic

Messages | Files | Photos | Links | Database | Polls | Calendar

1. While it is wonderful to share our experiences with everyone on the list as

to what treatments do and don't work for us, pls always check with your dr.

Some treatments are dangerous when given along with other meds as well as to

certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't be

afraid to ask for help. It is the first step to trying to make that situation

better.

3. To unsubscribe the e-mail is:

Fibromyalgia_Support_Group-unsubscribe

4. Also, it is not uncommon for more than one member to be feeling bad at the

same time when it comes to flares and b/c of that potentially take something

another member says the wrong way. And that includes the things that one member

may find funny (even if it's laughing at fibro itself) even though we who deal

with illness whether one such as fibro or multiple illnesses try to keep a sense

of humor.

5. Pls let's be gentle with each other, and if you are having a bad day pls let

us know so that we can do our best to offer our support.

Have a nice day everyone.

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[Guest guest]

Annie that is great. I hope that it works out for you. I am willing to help

anyway that I can.Della

Re: Re: WE NEED people to speak out? LETS DO IT...

I have a television show interested in story about chronic pain. It has been

sent to the producers. It is a show with Leeza Gibbons. I am awaiting an answer.

It would be great to have a bunch of us on the show to tell our stories.

Annie in TN

Jeanne and Dave wrote:

Wow - you have many great ideas!

Jeanne in WI

Here's some suggestions Debra:

Set up a website run by people who suffer with it

Make up a flyer/brochure and send it out to as many doctors (ALL kinds of

doctors) as you can think of

Write an article about the disease and send it to as many newspapers and

magazines as you can think of submitting it as a freelance writer. Send it to

the health editor of the newspapers. Start out with small local newspapers and

work from there. Also, work with any

local magazines that are pubished and there are definately some local magazines

(ANY type!)

Start a local support group and organize a booth at local events (i.e,

festivals, health events, etc)

Write to your local radio and TV stations and urge them to talk about

fibromyalgia on awareness day.

If any local TV or radio station has a " health " spot write and encourage them to

interview doctors/patients who suffer from fibromyalgia.

Talk to your local government and have them do a recognition of fibromaylgia

awareness day city wide and get it in the paper.

That's all I can think of right now

N.

[Guest guest]

I would do a commercial " Walking Tall " style.

Doctor tells me he doesn't believe in Fibromyalgia.

Cut to the " Walking Tall " part 1 scene where Sheriff Bufford Pusser

where he swings at the camera with a 4 foot Hickory stick.

" Sorry Doc, Did you say you were in pain? "

" Well,..I just don't see it so it must all be in your head, here let

me help you pull that club out of your skull "

[Guest guest]

, you are TOO FUNNY!!!! But it's oh so true. Most doctors as well as others

don't believe in things they can't see, they can't test or prove by testing.

I have written to our local ABC station here in Tyler giving them information

about Fibromyalgia. They have a section with a Doctor that answers questions. I

am hoping to see the fibro info on there soon.

I also notices the FMA is going to have a walk to raise money and awareness for

Fibro. Who can walk??? I can't!!

Debra B

Re: WE NEED people to speak out? LETS DO IT...

I would do a commercial " Walking Tall " style.

Doctor tells me he doesn't believe in Fibromyalgia.

Cut to the " Walking Tall " part 1 scene where Sheriff Bufford Pusser

where he swings at the camera with a 4 foot Hickory stick.

" Sorry Doc, Did you say you were in pain? "

" Well,..I just don't see it so it must all be in your head, here let

me help you pull that club out of your skull "

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

-too funny!

I keep a stick in my purse. The stick is about 7 inches long 3/4in in diameter

and smooth.

My intended use for 'the stick' is that when I have had MORE THAN ENOUGH of

anyone's

bull- but especially MD Bull, I will simply take a deep calming breath rummmage

in my

purse for a moment and produce 'the stick.' Then I would hand them 'the stick'

and

say,calmly, " This is for you. Put it where it will do you the most good. " Not

great as a

Public Service Announcement. It helps me cope. Knowing that I have 'the stick',

should I

ever realy,realy, need it,

Cassandra

>

> I would do a commercial " Walking Tall " style.

>

> Doctor tells me he doesn't believe in Fibromyalgia.

>

> Cut to the " Walking Tall " part 1 scene where Sheriff Bufford Pusser

> where he swings at the camera with a 4 foot Hickory stick.

>

> " Sorry Doc, Did you say you were in pain? "

>

> " Well,..I just don't see it so it must all be in your head, here let

> me help you pull that club out of your skull "

>