Fwd: Fibromyalgia ( I wrote this to the ny times) here is a copy

[Guest guest]

debra van ness wrote: Date: Tue, 15 Jan 2008 09:07:34

-0800 (PST)

Subject: Fibromyalgia

To: nytnews@...

Just a note to say what I know about fibromyalgia. I do know that it moved

into my life full blast about 5 years ago now. I am now 43. For years and

years I had symtoms that were so mild I discounted them and ignored them. I

made up excuses for the constant fatigue, the numnbness and tingling in my hands

and the pain which was mild back then.

I am a registered nurse and have been for 16 years. I did not even know what

the term " fibromyalgia " meant. I had a horrible flare about 5 years ago and did

not have a clue as to what was wrong with me. My entire body was hurting so bad

I could hardly move. My hands were tortured with burning pain and tingling that

would not stop. I was so overly exhausted I could not hardly move out of the

bed. The stiffness was horrible. I sought diagnosis then. Soon I would learn

just what fibromyalgia really is.

Since that one flare that sent me screaming to doctors for relief, I have

never ever been the same again. I fear that it will disable me as it has so

many others. I still work full time but cannot manage to do anything else

because of constant exhaustion and pain. I have a doctor who knows what this

does and treats me accordingly. I am lucky. Most of the estimated 6-10 million

Americans do not have a doctor who will believe... BECAUSE they cannot see it.

I have seen the sneers and the doubts from others who have never experienced

this illness. We are labeled " crazy " , " lazy " , " hypochondriacs " and " liars " .

This only adds to the physical miseries of this very REAL illness. I must not

forget the " you like fine " comments. However, I never really look fine. No

matter how much I sleep or don't sleep I am constantly exhausted and wake in the

mornings with stiffness so horrible I cannot bend my back for the first hour.

What I ask for those that do not believe us is for you to please rethink what

it would be like to live with this illness. Just entertain the possibility of

it being real.... because I can promise you that it is.

Debra V.

R.N.

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[Guest guest]

Dear Debra,

I also wrote to the NY Times. I do not have copy but did tell the author of

the article a few things about real fibro. and what it is like to have it. I

also told him that we need people that will help us educate docs and gen. public

and need help finding more treatments and cures.I told him he has the power to

help us not doubt us.

Jodi

debra van ness wrote:

debra van ness wrote: Date: Tue, 15 Jan 2008 09:07:34

-0800 (PST)

Subject: Fibromyalgia

To: nytnews@...

Just a note to say what I know about fibromyalgia. I do know that it moved into

my life full blast about 5 years ago now. I am now 43. For years and years I had

symtoms that were so mild I discounted them and ignored them. I made up excuses

for the constant fatigue, the numnbness and tingling in my hands and the pain

which was mild back then.

I am a registered nurse and have been for 16 years. I did not even know what the

term " fibromyalgia " meant. I had a horrible flare about 5 years ago and did not

have a clue as to what was wrong with me. My entire body was hurting so bad I

could hardly move. My hands were tortured with burning pain and tingling that

would not stop. I was so overly exhausted I could not hardly move out of the

bed. The stiffness was horrible. I sought diagnosis then. Soon I would learn

just what fibromyalgia really is.

Since that one flare that sent me screaming to doctors for relief, I have never

ever been the same again. I fear that it will disable me as it has so many

others. I still work full time but cannot manage to do anything else because of

constant exhaustion and pain. I have a doctor who knows what this does and

treats me accordingly. I am lucky. Most of the estimated 6-10 million Americans

do not have a doctor who will believe... BECAUSE they cannot see it.

I have seen the sneers and the doubts from others who have never experienced

this illness. We are labeled " crazy " , " lazy " , " hypochondriacs " and " liars " . This

only adds to the physical miseries of this very REAL illness. I must not forget

the " you like fine " comments. However, I never really look fine. No matter how

much I sleep or don't sleep I am constantly exhausted and wake in the mornings

with stiffness so horrible I cannot bend my back for the first hour.

What I ask for those that do not believe us is for you to please rethink what it

would be like to live with this illness. Just entertain the possibility of it

being real.... because I can promise you that it is.

Debra V.

R.N.

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

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

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[Guest guest]

Hey Debra

Somehow the post with your letter to New York times

got lost for me, but I found your letter in a reply to

that post...

It was really good. I hope the editor reads it. She

should read it and apologize to all who have fibro.

But I don't think she will do.

Anyway, you can always hope.

--

> debra van ness wrote:

>

>

> debra van ness wrote: Date:

> Tue, 15 Jan 2008 09:07:34 -0800 (PST)

>

> Subject: Fibromyalgia

> To: nytnews@...

>

> Just a note to say what I know about fibromyalgia. I

> do know that it moved into my life full blast about

> 5 years ago now. I am now 43. For years and years I

> had symtoms that were so mild I discounted them and

> ignored them. I made up excuses for the constant

> fatigue, the numnbness and tingling in my hands and

> the pain which was mild back then.

>

> I am a registered nurse and have been for 16 years.

> I did not even know what the term " fibromyalgia "

> meant. I had a horrible flare about 5 years ago and

> did not have a clue as to what was wrong with me. My

> entire body was hurting so bad I could hardly move.

> My hands were tortured with burning pain and

> tingling that would not stop. I was so overly

> exhausted I could not hardly move out of the bed.

> The stiffness was horrible. I sought diagnosis then.

> Soon I would learn just what fibromyalgia really is.

>

> Since that one flare that sent me screaming to

> doctors for relief, I have never ever been the same

> again. I fear that it will disable me as it has so

> many others. I still work full time but cannot

> manage to do anything else because of constant

> exhaustion and pain. I have a doctor who knows what

> this does and treats me accordingly. I am lucky.

> Most of the estimated 6-10 million Americans do not

> have a doctor who will believe... BECAUSE they

> cannot see it.

>

> I have seen the sneers and the doubts from others

> who have never experienced this illness. We are

> labeled " crazy " , " lazy " , " hypochondriacs " and

> " liars " . This only adds to the physical miseries of

> this very REAL illness. I must not forget the " you

> like fine " comments. However, I never really look

> fine. No matter how much I sleep or don't sleep I am

> constantly exhausted and wake in the mornings with

> stiffness so horrible I cannot bend my back for the

> first hour.

>

> What I ask for those that do not believe us is for

> you to please rethink what it would be like to live

> with this illness. Just entertain the possibility of

> it being real.... because I can promise you that it

> is.

>

> Debra V.

> R.N.

>

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

> Looking for last minute shopping deals? Find them

> fast with Yahoo! Search.

>

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

> Be a better friend, newshound, and know-it-all with

> Yahoo! Mobile. Try it now.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

> Jodi (JEM)

>

>

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

> Never miss a thing. Make Yahoo your homepage.

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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[Guest guest]

Thanks . I don't know. They will probably just toss everything with the

word " fibromyalgia " asside and delete it all. People don't want to hear us. If

they wanted to hear us, they might understand or believe what we go through.

Somehow, it is just not THEIR problem, therefore, they choose to not believe it.

love and hugs,

Debra V.

Svensson wrote:

Hey Debra

Somehow the post with your letter to New York times

got lost for me, but I found your letter in a reply to

that post...

It was really good. I hope the editor reads it. She

should read it and apologize to all who have fibro.

But I don't think she will do.

Anyway, you can always hope.

--

> debra van ness wrote:

>

>

> debra van ness wrote: Date:

> Tue, 15 Jan 2008 09:07:34 -0800 (PST)

>

> Subject: Fibromyalgia

> To: nytnews@...

>

> Just a note to say what I know about fibromyalgia. I

> do know that it moved into my life full blast about

> 5 years ago now. I am now 43. For years and years I

> had symtoms that were so mild I discounted them and

> ignored them. I made up excuses for the constant

> fatigue, the numnbness and tingling in my hands and

> the pain which was mild back then.

>

> I am a registered nurse and have been for 16 years.

> I did not even know what the term " fibromyalgia "

> meant. I had a horrible flare about 5 years ago and

> did not have a clue as to what was wrong with me. My

> entire body was hurting so bad I could hardly move.

> My hands were tortured with burning pain and

> tingling that would not stop. I was so overly

> exhausted I could not hardly move out of the bed.

> The stiffness was horrible. I sought diagnosis then.

> Soon I would learn just what fibromyalgia really is.

>

> Since that one flare that sent me screaming to

> doctors for relief, I have never ever been the same

> again. I fear that it will disable me as it has so

> many others. I still work full time but cannot

> manage to do anything else because of constant

> exhaustion and pain. I have a doctor who knows what

> this does and treats me accordingly. I am lucky.

> Most of the estimated 6-10 million Americans do not

> have a doctor who will believe... BECAUSE they

> cannot see it.

>

> I have seen the sneers and the doubts from others

> who have never experienced this illness. We are

> labeled " crazy " , " lazy " , " hypochondriacs " and

> " liars " . This only adds to the physical miseries of

> this very REAL illness. I must not forget the " you

> like fine " comments. However, I never really look

> fine. No matter how much I sleep or don't sleep I am

> constantly exhausted and wake in the mornings with

> stiffness so horrible I cannot bend my back for the

> first hour.

>

> What I ask for those that do not believe us is for

> you to please rethink what it would be like to live

> with this illness. Just entertain the possibility of

> it being real.... because I can promise you that it

> is.

>

> Debra V.

> R.N.

>

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

> Looking for last minute shopping deals? Find them

> fast with Yahoo! Search.

>

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

> Be a better friend, newshound, and know-it-all with

> Yahoo! Mobile. Try it now.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

> Jodi (JEM)

>

>

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

> Never miss a thing. Make Yahoo your homepage.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Be a better friend, newshound, and

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

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

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

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