Re: Sad State of Affairs for Fibro Sufferers--OK, I am MAD!!!!!

January 23, 2008

I am about the spit pea soup and my head is about the spin around backwards! I

am so pissed! What the hell does anybody know about fibromyalgia except the

ones that suffer from it and have to live with the stigma attached to it.

Just imagine that tomorrow all the x/ray machines are not working. Imagine

some of these same A_ _ holes having a broken bone and in pain. Imagine no

bruising or swelling but they cannot move the limb that is broken. Now imagine

that the medical staff in the E.R. say " well, we can't FIND anything wrong, so

you must be imagining this " " here are some antidepressants, go home and take

these. After you take them a few weeks you will not have this pain because it

will fix your head " ..... " why can't you walk on that leg " ???? We can't SEE

anything wrong with it " . " now the pain can't be THAT bad " ..... " no you can't

have a release from work, there is nothing we can see that is causing you any

pain " .

grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.......

Debra V.

Mystic wrote:

After reading the report in the New York Times that has caused such

an uproar I was curious about other articles in newspapers concerning

fibromyalgia.

I found one that is very disturbing. A lady at teh Philadelphia

Inquirer wrote a column about the high cost of drugs. Even though

most of the article is about STEROID use! her first sentence

was: " Time for another episode of the Wonderful World of Drugs. The

disease fibromyalgia might not be real, but the drug used to treat

it, Lyrica - a bewitching name for a painkiller - is very much so, a

whopping $1.8 billion annual success. " The whole article can be seen

at:

http://www.philly.com/inquirer/columnists/karen_heller/20080116__

Heller__They_do_the_drugs__we_pay.html

Then in this online article: Accused of hiding drug dangers again,

Big Pharma starts 2008 defending itself,By Martha Rosenberg

Online Journal Contributing Writer, the writer not only states this

about fibro sufferers " And then there's fibromyalgia, another

amorphous, no cause/no cure/no clear definition condition that lends

itself to lucrative direct-to-consumer self-diagnosis. " This whole

article is at:

http://onlinejournal.com/artman/publish/article_2864.shtml

Another online article in the Abilene Online Reporter News mirrors

the New York Times article. You can view the article at:

http://www.reporternews.com/news/2008/jan/17/the-controversy-over-

fibromyalgia/

Another article, in the same negative vein, is on the health blog at

the wall street journal. It can be found at:

http://blogs.wsj.com/health/2008/01/14/fibromyalgia-pioneer-rethinks-

disease-as-pfizer/

These are a few recent articles, opinon columns that i found that

have the same negative tone as the New York Times Article. Please,

everyone who is outraged and writing the New York Times, take a

minute to visit these sites also and email the author, leave a

comment about the column, etc.

The only way to change the opinion of people who are writing columns

like these are for the people who are actually suffering from this

condition to speak up! I know that we do not have a lot of control

over our health when it comes to this disease, but writing emails and

comments to these authors, trying to enlighten them at least a little

to the realities of living with this disease is something that we CAN

do without having to leave our homes!! I was appalled at how many

newspapers picked up that new york times article and ran it!!! There

were MANY!! For anyone who has the spirit and energy, add those to

your list of editors to write and try to at least get the viewpoint

of the sufferers to their attention.

If anyone is interested I will try to see if I can get together a

list of the newspapers that ran the New York Times article and post

it in the files section with the websites.

It is sad that the sufferers of this illness are the ones who are

going to have to educate the media but that is exactly what is going

to have to be done!

Okay, off my soapbox

N.

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

Never miss a thing. Make Yahoo your homepage.

January 23, 2008

Debra - I'm not even reading them, because I don't have the energy for the

anger. Please try to calm down. Well, it's several hours later now, you

may even be at work. All I'm saying is I understand your frustration and

anger, but taking on this personal crusade might wear you out more than you

already are. Yes, the word about the truth of FM does need to get out, and

it will in time. Does anger energize you or tire you out? For me, it's the

latter.

I appreciate the letters you've written to these idiots. Just make sure you

keep taking care of you, too. Take care.

Jeanne in WI

>I am about the spit pea soup and my head is about the spin around

>backwards! I am so pissed! What the hell does anybody know about

>fibromyalgia except the ones that suffer from it and have to live with the

>stigma attached to it.

> Just imagine that tomorrow all the x/ray machines are not working.

> Imagine some of these same A_ _ holes having a broken bone and in pain.

> Imagine no bruising or swelling but they cannot move the limb that is

> broken. Now imagine that the medical staff in the E.R. say " well, we

> can't FIND anything wrong, so you must be imagining this " " here are some

> antidepressants, go home and take these. After you take them a few weeks

> you will not have this pain because it will fix your head " ..... " why

> can't you walk on that leg " ???? We can't SEE anything wrong with it " .

> " now the pain can't be THAT bad " ..... " no you can't have a release from

> work, there is nothing we can see that is causing you any pain " .

>

> grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.......

>

> Debra V.

January 23, 2008

You are so right Jeanne. I am better now. I just get so sick of this doubt.

It makes me madder than the illness itself. I am going to try in the future to

accept that most of the general public does not believe this. I am now calm.

Thanks honey. And yes, anger wears me out.

love ya,

Debra V.

djgraves9497@... wrote:

Debra - I'm not even reading them, because I don't have the energy for

the