A copy, the letter I wrote CNN today

[Guest guest]

>

> Subject: Estimated ten million Americans with this illness

> To: vcm@...

> Date: Sunday, May 11, 2008, 9:03 AM

> To whom it may concern:

>

> I am writing not only on behalf of myself, but about 1500

> members of my support group and approximately ten million

> people in the U.S. alone who suffer from Fibromyalgia.

> Please read this. Even if we don't get much news

> coverage, if ONE person reads this and tries to understand,

> then this letter is worth writing.

>

> My personal experience with Fibromyalgia began in my

> 20's. I am now 44. I did not even pay attention in my

> twenties because the symptoms were mild.

> I had never even heard the word " fibromyalgia "

> until it progressed and hit me hard at the age of 39. I am

> an R.N. of 16 years. So this tells you that the medical

> community as well as the general population has little

> knowledge of this illness.

>

> It started with numbness and tingling in the fingertips and

> chronic " tiredness " when I was in my twenties. I

> went to doctors with the " always feeling tired no

> matter how much I sleep " . I was simply told to

> exercise more. I was young, active, and not overweight

> then. I blew it off and thought it must be normal to feel

> like that. I also thought I had carpal tunnel syndrome to

> explain the numbness and tingling that would come and go in

> my fingers.

>

> At the age of thirty-nine I bacame very ill. My hands

> began to hurt and sway from tingling sensations to burning

> pain that was severe. At the same time my knees began to

> hurt. I had all over flu like aches and was so exhausted I

> could hardly move. My mind was foggy with concentration and

> memory problems. The stiffness of my whole body also

> began. I missed several weeks of work not knowing what was

> wrong. I thought I was dying with something fatal. I felt

> like I was dying. Keep in mind that up until that

> particular flare, I never had a pain which Tylenol would

> not take care of. I would learn in about four to six weeks

> that I have Fibromyalgia. I had NEVER read anything about

> it but quickly learned what this disease is. I have never

> been the same since that flare at thirty-nine years of age.

>

> I still work full time out of necessity. It is very

> difficult and if not for a great physician who knows

> Fibromyalgia is real, I would not be able to support my

> young children. I am completely exhausted 90% of the time

> no matter how much I sleep. I wake up every morning

> feeling like someone has beaten me with a board and the

> stiffness is so bad at times that I cannot get out of bed

> without help.

>

> I want to say that if it is researched, you will find that

> most of the people with this illness were once very active,

> educated, and have or HAD highly demanding careers. Most of

> us could not fit the stereotype of this illness which the

> general public has given us. We are not lazy. We are not

> hypochondriacs and we are not drug seekers and liars.

> Though you cannot see this illness, those of us who have it

> KNOW it is REAL.

>

> Please consider offering more coverage and education about

> this. Keep in mind also that Lyrica helps some of us,

> whereas it does not help others at all. Even though it

> does help some of us, it is NOT a cure.

>

> Thank you,

> Sincerely,

> Debra Van Ness R.N.

>

>

>

>

>

________________________________________________________________________________\

____

> Be a better friend, newshound, and

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

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

________________________________________________________________________________\

____

Be a better friend, newshound, and

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

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

[Guest guest]

KUDOS AND A STANDING OVATION TO YOU DEBRA!!!!!

That was lovely..and my letters tell some about the way I feel, and

when it started with me as well.

Sooner or later, they are going to either have to give in and agree to

a news report, or something about FMS, or block all our emails

one..LOL..They should be aware, that we are not kidding about any of

these ills we have. Most of us share common grounds with the pain.

All of share the stiffness, and fogginess that Fibromyalgia brings to us.

I want you to know, I haven't gotten one reply from CNN. Just only

the auto email to let me know it was received.

Let us all know if you receive any kind of email from a reporter

there, will you?

Good Luck to all of us on this mission, and God Bless each and every

one of us that suffer with this monster!

~

-- In Fibromyalgia_Support_Group , debra van ness

wrote:

>

>

>

>

>

>

> > From: debra van ness

> > Subject: Estimated ten million Americans with this illness

> > To: vcm@...

> > Date: Sunday, May 11, 2008, 9:03 AM

> > To whom it may concern:

> >

> > I am writing not only on behalf of myself, but about 1500

> > members of my support group and approximately ten million

> > people in the U.S. alone who suffer from Fibromyalgia.

> > Please read this. Even if we don't get much news

> > coverage, if ONE person reads this and tries to understand,

> > then this letter is worth writing.

> >

> > My personal experience with Fibromyalgia began in my

> > 20's. I am now 44. I did not even pay attention in my

> > twenties because the symptoms were mild.

> > I had never even heard the word " fibromyalgia "

> > until it progressed and hit me hard at the age of 39. I am

> > an R.N. of 16 years. So this tells you that the medical

> > community as well as the general population has little

> > knowledge of this illness.

> >

> > It started with numbness and tingling in the fingertips and

> > chronic " tiredness " when I was in my twenties. I

> > went to doctors with the " always feeling tired no

> > matter how much I sleep " . I was simply told to

> > exercise more. I was young, active, and not overweight

> > then. I blew it off and thought it must be normal to feel

> > like that. I also thought I had carpal tunnel syndrome to

> > explain the numbness and tingling that would come and go in

> > my fingers.

> >

> > At the age of thirty-nine I bacame very ill. My hands

> > began to hurt and sway from tingling sensations to burning

> > pain that was severe. At the same time my knees began to

> > hurt. I had all over flu like aches and was so exhausted I

> > could hardly move. My mind was foggy with concentration and

> > memory problems. The stiffness of my whole body also

> > began. I missed several weeks of work not knowing what was

> > wrong. I thought I was dying with something fatal. I felt

> > like I was dying. Keep in mind that up until that

> > particular flare, I never had a pain which Tylenol would

> > not take care of. I would learn in about four to six weeks

> > that I have Fibromyalgia. I had NEVER read anything about

> > it but quickly learned what this disease is. I have never

> > been the same since that flare at thirty-nine years of age.

> >

> > I still work full time out of necessity. It is very

> > difficult and if not for a great physician who knows

> > Fibromyalgia is real, I would not be able to support my

> > young children. I am completely exhausted 90% of the time

> > no matter how much I sleep. I wake up every morning

> > feeling like someone has beaten me with a board and the

> > stiffness is so bad at times that I cannot get out of bed

> > without help.

> >

> > I want to say that if it is researched, you will find that

> > most of the people with this illness were once very active,

> > educated, and have or HAD highly demanding careers. Most of

> > us could not fit the stereotype of this illness which the

> > general public has given us. We are not lazy. We are not

> > hypochondriacs and we are not drug seekers and liars.

> > Though you cannot see this illness, those of us who have it

> > KNOW it is REAL.

> >

> > Please consider offering more coverage and education about

> > this. Keep in mind also that Lyrica helps some of us,

> > whereas it does not help others at all. Even though it

> > does help some of us, it is NOT a cure.

> >

> > Thank you,

> > Sincerely,

> > Debra Van Ness R.N.

> >

> >

> >

> >

> >

________________________________________________________________________________\

____

> > Be a better friend, newshound, and

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

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

>

>

>

________________________________________________________________________________\

____

> Be a better friend, newshound, and

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

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

>

[Guest guest]

Excellent, Debra!!!!

Estimated ten million Americans with this illness

> To: vcm@...

> Date: Sunday, May 11, 2008, 9:03 AM

> To whom it may concern:

>

> I am writing not only on behalf of myself, but about 1500

> members of my support group and approximately ten million

> people in the U.S. alone who suffer from Fibromyalgia.

> Please read this. Even if we don't get much news

> coverage, if ONE person reads this and tries to understand,

> then this letter is worth writing.

>

> My personal experience with Fibromyalgia began in my

> 20's. I am now 44. I did not even pay attention in my

> twenties because the symptoms were mild.

> I had never even heard the word " fibromyalgia "

> until it progressed and hit me hard at the age of 39. I am

> an R.N. of 16 years. So this tells you that the medical

> community as well as the general population has little

> knowledge of this illness.

>

> It started with numbness and tingling in the fingertips and

> chronic " tiredness " when I was in my twenties. I

> went to doctors with the " always feeling tired no

> matter how much I sleep " . I was simply told to

> exercise more. I was young, active, and not overweight

> then. I blew it off and thought it must be normal to feel

> like that. I also thought I had carpal tunnel syndrome to

> explain the numbness and tingling that would come and go in

> my fingers.

>

> At the age of thirty-nine I bacame very ill. My hands

> began to hurt and sway from tingling sensations to burning

> pain that was severe. At the same time my knees began to

> hurt. I had all over flu like aches and was so exhausted I

> could hardly move. My mind was foggy with concentration and

> memory problems. The stiffness of my whole body also

> began. I missed several weeks of work not knowing what was

> wrong. I thought I was dying with something fatal. I felt

> like I was dying. Keep in mind that up until that

> particular flare, I never had a pain which Tylenol would

> not take care of. I would learn in about four to six weeks

> that I have Fibromyalgia. I had NEVER read anything about

> it but quickly learned what this disease is. I have never

> been the same since that flare at thirty-nine years of age.

>

> I still work full time out of necessity. It is very

> difficult and if not for a great physician who knows

> Fibromyalgia is real, I would not be able to support my

> young children. I am completely exhausted 90% of the time

> no matter how much I sleep. I wake up every morning

> feeling like someone has beaten me with a board and the

> stiffness is so bad at times that I cannot get out of bed

> without help.

>

> I want to say that if it is researched, you will find that

> most of the people with this illness were once very active,

> educated, and have or HAD highly demanding careers. Most of

> us could not fit the stereotype of this illness which the

> general public has given us. We are not lazy. We are not

> hypochondriacs and we are not drug seekers and liars.

> Though you cannot see this illness, those of us who have it

> KNOW it is REAL.

>

> Please consider offering more coverage and education about

> this. Keep in mind also that Lyrica helps some of us,

> whereas it does not help others at all. Even though it

> does help some of us, it is NOT a cure.

>

> Thank you,

> Sincerely,

> Debra Van Ness R.N.

>

>

>

>

> __________________________________________________________

> Be a better friend, newshound, and

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

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

__________________________________________________________

Be a better friend, newshound, and

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

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