Drug Approved. Is Disease Real? January 14, 2008

[Guest guest]

I have written a letter previously in response to the article titled " Drug

Approved. Is Disease Real? " which was published on January 14, 2008. It

insinuates that fibromyalgia is a " made up " disease. I am so sick of being ill

with a disease that has taken away just about everything I ever was. I am even

more sick and tired of the disbelief. Shame on the author and the article. I

am a registered nurse who never even knew what fibromyalgia was until the

symptoms became so bad I could hardly function. I did not just go looking up a

disease on the internet and develop the symptoms. I had it long before I ever

knew it existed.

Maybe the reader of this letter has headaches sometimes. Well, fibromyalgia

is much worse than an everyday run of the mill headache. However, to make a

point, suppose that headaches were only experienced by a few people. There are

no lab data, x-rays, or other means of proof that you actually hurt. You would

be infuriated to have a horrible headache and just have people tell you that you

only want sympathy, attention, and drugs. It might even be worse to have them

tell you that you are crazy because no one else can see the pain.

I have no sympathy for people who do not believe me. Especially when they

have a little 2 or 3 day virus and they are " hurting all over " . They are

believed. Why? Because it will go away. Also, just about everyone gets the

flu now and then. Well, imagine living with that pain everyday and magnify it

by 5 or 10 times the intensity. It is not only pain we deal with but a wide

spectrum of other symptoms that make us look even more non credible. A few of

the other symptoms are numbness and tingling, severe stiffness, sleep disorders,

and cognitive problems such as concentration and memory deficits, and severe

fatigue everyday.

I have a physician who knows that fibromyalgia is real. I am lucky. Some of

the people with this curse of an inivisible illness must suffer because of the

fixed beliefs of some doctors. It is also a very hurtful situation when

friends, family and co workers refuse to believe it.

I still work. ( I will not be able to if this disease worsens in the next 5

years as it has in the last 5 years). I am not an attention seeking, drug

seeking lunatic that can't deal with " everyday aches and pains " . I assure you

that fibromyalgia is NOT everyday aches and pain. It is a deep rooted all over

pain that probably hurts as bad as pain from cancer or AIDS in the worst cases.

It is REAL and disabling. I suppose someone could decide to make it all up.

But why? There are no personal gains from having an illness with such a stigma

attached to it.

I also have the belief that if this were not predominantely an illness that

plagues women,

there would be much more progress in research and it would not be nearly as

doubted.

Debra V. R.N.

Lufkin, TX

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

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[Guest guest]

Good Job!!!

Marti

debra van ness wrote:

I have written a letter previously in response to the article titled

" Drug Approved. Is Disease Real? " which was published on January 14, 2008. It

insinuates that fibromyalgia is a " made up " disease. I am so sick of being ill

with a disease that has taken away just about everything I ever was. I am even

more sick and tired of the disbelief. Shame on the author and the article. I am

a registered nurse who never even knew what fibromyalgia was until the symptoms

became so bad I could hardly function. I did not just go looking up a disease on

the internet and develop the symptoms. I had it long before I ever knew it

existed.

Maybe the reader of this letter has headaches sometimes. Well, fibromyalgia is

much worse than an everyday run of the mill headache. However, to make a point,

suppose that headaches were only experienced by a few people. There are no lab

data, x-rays, or other means of proof that you actually hurt. You would be

infuriated to have a horrible headache and just have people tell you that you

only want sympathy, attention, and drugs. It might even be worse to have them

tell you that you are crazy because no one else can see the pain.

I have no sympathy for people who do not believe me. Especially when they have a

little 2 or 3 day virus and they are " hurting all over " . They are believed. Why?

Because it will go away. Also, just about everyone gets the flu now and then.

Well, imagine living with that pain everyday and magnify it by 5 or 10 times the

intensity. It is not only pain we deal with but a wide spectrum of other

symptoms that make us look even more non credible. A few of the other symptoms

are numbness and tingling, severe stiffness, sleep disorders, and cognitive

problems such as concentration and memory deficits, and severe fatigue everyday.

I have a physician who knows that fibromyalgia is real. I am lucky. Some of the

people with this curse of an inivisible illness must suffer because of the fixed

beliefs of some doctors. It is also a very hurtful situation when friends,

family and co workers refuse to believe it.

I still work. ( I will not be able to if this disease worsens in the next 5

years as it has in the last 5 years). I am not an attention seeking, drug

seeking lunatic that can't deal with " everyday aches and pains " . I assure you

that fibromyalgia is NOT everyday aches and pain. It is a deep rooted all over

pain that probably hurts as bad as pain from cancer or AIDS in the worst cases.

It is REAL and disabling. I suppose someone could decide to make it all up. But

why? There are no personal gains from having an illness with such a stigma

attached to it.

I also have the belief that if this were not predominantely an illness that

plagues women,

there would be much more progress in research and it would not be nearly as

doubted.

Debra V. R.N.

Lufkin, TX

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

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Very good and Amen

Diane

--- Marti Boguski wrote:

> Good Job!!!

> Marti

>

> debra van ness wrote:

> I have written a letter previously in

> response to the article titled " Drug Approved. Is

> Disease Real? " which was published on January 14,

> 2008. It insinuates that fibromyalgia is a " made up "

> disease. I am so sick of being ill with a disease

> that has taken away just about everything I ever

> was. I am even more sick and tired of the disbelief.

> Shame on the author and the article. I am a

> registered nurse who never even knew what

> fibromyalgia was until the symptoms became so bad I

> could hardly function. I did not just go looking up

> a disease on the internet and develop the symptoms.

> I had it long before I ever knew it existed.

>

> Maybe the reader of this letter has headaches

> sometimes. Well, fibromyalgia is much worse than an

> everyday run of the mill headache. However, to make

> a point, suppose that headaches were only

> experienced by a few people. There are no lab data,

> x-rays, or other means of proof that you actually

> hurt. You would be infuriated to have a horrible

> headache and just have people tell you that you only

> want sympathy, attention, and drugs. It might even

> be worse to have them tell you that you are crazy

> because no one else can see the pain.

>

> I have no sympathy for people who do not believe me.

> Especially when they have a little 2 or 3 day virus

> and they are " hurting all over " . They are believed.

> Why? Because it will go away. Also, just about

> everyone gets the flu now and then. Well, imagine

> living with that pain everyday and magnify it by 5

> or 10 times the intensity. It is not only pain we

> deal with but a wide spectrum of other symptoms that

> make us look even more non credible. A few of the

> other symptoms are numbness and tingling, severe

> stiffness, sleep disorders, and cognitive problems

> such as concentration and memory deficits, and

> severe fatigue everyday.

>

> I have a physician who knows that fibromyalgia is

> real. I am lucky. Some of the people with this curse

> of an inivisible illness must suffer because of the

> fixed beliefs of some doctors. It is also a very

> hurtful situation when friends, family and co

> workers refuse to believe it.

>

> I still work. ( I will not be able to if this

> disease worsens in the next 5 years as it has in the

> last 5 years). I am not an attention seeking, drug

> seeking lunatic that can't deal with " everyday aches

> and pains " . I assure you that fibromyalgia is NOT

> everyday aches and pain. It is a deep rooted all

> over pain that probably hurts as bad as pain from

> cancer or AIDS in the worst cases. It is REAL and

> disabling. I suppose someone could decide to make it

> all up. But why? There are no personal gains from

> having an illness with such a stigma attached to it.

>

> I also have the belief that if this were not

> predominantely an illness that plagues women,

> there would be much more progress in research and it

> would not be nearly as doubted.

>

> Debra V. R.N.

> Lufkin, TX

>

>

>

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

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> Yahoo! Mobile. Try it now.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

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

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> Yahoo! Mobile. Try it now.

>

> [Non-text portions of this message have been

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>

>

>

> 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.

>

>