Re: Think on this..... Fibromyalgia WONT kill us- To Marg

[Guest guest]

Well, I am really procrastinating today --- should be working on

Turbo tax but my mind is not functioning on a level it should!!

I think I watched both of my parents and other older members of my

family who may very well have had symtoms such as we have but because

so many of them were from an earlier generation, they just kept

going. My father, I know was in constant pain and at some point in

his older years, he realized he could not get out and walk the fields

of the family's 600 + acre, he decided (this could have also been a

way to return to his youth, but perhaps not) anyway, here was this

man in his late 60's or early 70's out there riding a motorcycle

again!!! Now, I will admit, that when I watched the world's Fastest

Indian Movie, I could only think of my father doing that --- he had

an Indian motorcycle in his younger days, but there he was checking

conditions on that farm. And I also have to wonder HOW did the man

who was in such pain! work at a job in an independent coal mine so he

could have insurance for his family and at the same time, turn a farm

that had been a joke, into one of the best in the area???? He had

back surgery, he would sleep on the floor because his back hurt, he

and my mother finally just put a board between the mattress and the

box springs --- they both had back problems!!! And then there is my

youngest aunt whom I call from time to time and when I ask how she

is, I know that's a silly question to ask because she is going to

say " I'm tired! " But once again, even though she's less than 10

years older than me, she continues to do so many things. She does

not have a dryer, so when she does her laundry, it is hung on the

clothes line AND then other times, she has just finished ironing!!!

While her sister, who lived next door, was fighting her loosing

battle with cancer, my aunt was cooking 2 or 3 main meals each week

for her husband, her sister and brother-in-law and her only surviving

daughter who has type 1 diabetes. And when I thought about

suggesting they get meals on wheels, I think she was insalted! So, I

never followed through on that!!

But if I were to suggest that any of these people had fibro, I think

they would deny it, but I am not so certain that is not what they all

have had or do have fibro!!

But when I think of how many people in the past have had similiar

pains to our's just keep going, I am really amazed. And also they

did not have a way to communicate with each other as we can!!

And yes, we will possibly die of something that is related to the

fibro but until the medical community spends more time on this

mystery that has so many different conditions that area a part of it!!

And I still hate it when I read on the site as I did yesterday by

someone who said her doctor didn't believe it WAS A REAL condition or

disease. He needs to check his newest medical books.

> >

> > Ok, just thoughts again that run through my head. I have been

> comtemplating the mystery of this illness. The truth is, NO ONE

> knows exactly what the hell it is. There are theories probably as

> thick as a text book, yet no one has it figured out. It is all

> pretty much a guessing game because they cannot pin point the

> monster. What is it really? Several answers are: it is too much

> substance P in the spinal fluid, it is autoimmune, it is not

> autoimmune it is a disease of the nervous system, it is toxins, it

is

> a hidden virus they can't find, it is a mycoplasma, it is

> inflammatory in nature, it is not inflammatory, etc. etc. etc.

> >

> > I want to know for sure how they know the potential fatality of

> this illness? Ok, maybe it won't keel us over right away. Maybe it

> can. However, I suppose that so many of us have suffered for so

> many years and did not die from it. But think of it this way, fibro

> puts some people in bed for good. (some, not all). When you go to

> bed and can't hardly move and cannot care for yourself anymore,

then

> the secondary health problems come into play. Just the immobility

is

> dangerous to anyone. We are like a car that idles at about 6 or 8

> thousand RPM's instead of the healthy 1500 RPM's. Our muscles and

> nerves are in full gear and running all the time. If we took a car

> and punched the gas until it went into the red zone, it would not

> take long for the engine to blow. (just a little analogy). So, they

> think our bodies are not wearing out at an abnormal rate??

> >

> > And why the hell do I feel somedays like I am dying. I feel like

> everything in my body is screaming and starting to refuse to

> function. For some it affects our bowels, our bladder/urinary

> tract. Fibro does somehow affect the heart too because it has been

> documented that alot of us have an irregular heartbeat. (I do). It

> affects the brain in that we become so clouded we can hardly

> concentrate or remember. It causes unexplained numbness and

tingling

> that comes and goes at will. And don't forget the unrelenting

> pain. And lets mention the fact that people with fibromyalgia more

> often than not will get other illnesses that ARE fatal. Seems that

> Lupus comes close to going hand in hand with this unidentifiable

> crap. (as well as a host of other illnesses). Many people here have

> more diagnoses than fibro alone. Alot of those diseases set in

AFTER

> the fibro went to work on us.

> >

> > My take on it? They don't know a damn thing about what this is.

> They are playing guessing games now. (not to say there is not some

> good research now). And it took so long for anyone to believe it

> is real that they simply did not care to research it much until

> recent years. How many poor souls went to their graves being

labeled

> a " hypochondriac " ?

> >

> > I say it is more of a mystery than any other illness I have ever

> heard of. I am tired of it for myself and the many other lives it

> destroys. I am angry at a beast I cannot even put a identity on.

> >

> > If I died tomorrow (which I hope I wont).... they could not do

> any autopsy to find out if it was fibromyalgia that caused my heart

> attack or whatever natural cause they might lay it off to.

> >

> > I will bet they did not use to think MS could be fatal.

> Especially back in the days MS was also a stigma and not proven to

be

> a REAL disease. And then..... they had to say " OH, we were wrong.

> This is a real disease now that we have found some evidence. And by

> the way, yeah it can kill you " .

> >

> > love and hugs,

> > Debra V.

> >

> >

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

> > Looking for last minute shopping deals? Find them fast with

Yahoo!

> Search.

> >

> >

[Guest guest]

They say it because otherwise theyd have to term it potentially

terminal and that puts it into a whole different field, for them..

And doctors like to look at it by perspective.

Its llike you mentioned, they view it like bipolar. infact my

rheumatologist even compared it in some ways to bipolar.

They know its real, its a disorder, they cant see it but the pain is

there...

Well people(to the doctors ).. Bipolar kills people. The disorder

itself may not make your brain clot up, or your heart freeze, or rot

your insides or whatever.. But my sister died from bipolar, its a

deadly disorder. Id have to agree with the assessment given below.

What happens, in 10, 20 years? or less even! when i cant function,

like my bodys supposed to, and it just withers away? Is the doctor

gonna tell me thats... normal?

But because the fibro itself isnt know to cause death, they cant say

" cause of death, fibromyalgia " it doesnt get listed as deadly. It

would be the secondary cause. Its all perspective.. Just like bipolars

dont get listed as they died from bipolar.. its suicide, in their case.

Kinda funny(not haha funny) that it got brought up here, cause the

doctor who diagnosed me even brought that correlation of " its similar

to bipolar' up andd the first thing that came into my head is those

relations and im thinking greeeaattt..but of course not knowing much

about it yet i didnt say anything..

> Yep. I think you are right. I have to ask " how do they know it won't

> kill us when they don't really even know what the hell it is? "

> hugs,

> Debra V.

> idisnotok wrote:

> debra,

> i do agree with you. i do believe, from what i've read so far, with

> the central nervous system involvement,chemical p excess,etc, that

> fibro will one day be understood and placed in a similar category as

> ms,lupus,almost als. i believe some of the related organ involvement

> can become fatal, i also have a heart murmur.

> but fibro is alreay potentially fatal, in my opinion, similar to

> something like bipolar, because the actual fibro isn't fatal, what's

> fatal is our brain realizing we do not wanting to live this way for a

> lot longer.

> i have 3 kidney disorders, and if i needed a transplant, i would

> refuse it because i wouldn't want togo thru all that and then live

> and feel this shitty each and every minute of each and every

> day...and that doesn't include all the crummy hormone changes!

> take care,

> marg

>

>

>

>

>

[Guest guest]

I was referring to telling my kids I am NOT terminal.

Chronic is a better word since we are not putting our finances in order

or the funeral.

Re: Re: Think on this..... Fibromyalgia WONT kill us- To Marg

Yep. I think you are right. I have to ask " how do they know it won't kill us

when they don't really even know what the hell it is? "

hugs,

Debra V.

idisnotok wrote:

debra,

i do agree with you. i do believe, from what i've read so far, with

the central nervous system involvement,chemical p excess,etc, that

fibro will one day be understood and placed in a similar category as

ms,lupus,almost als. i believe some of the related organ involvement

can become fatal, i also have a heart murmur.

but fibro is alreay potentially fatal, in my opinion, similar to

something like bipolar, because the actual fibro isn't fatal, what's

fatal is our brain realizing we do not wanting to live this way for a

lot longer.

i have 3 kidney disorders, and if i needed a transplant, i would

refuse it because i wouldn't want togo thru all that and then live

and feel this ###### each and every minute of each and every

day...and that doesn't include all the crummy hormone changes!

take care,

marg

>

> Ok, just thoughts again that run through my head. I have been

comtemplating the mystery of this illness. The truth is, NO ONE

knows exactly what the hell it is. There are theories probably as

thick as a text book, yet no one has it figured out. It is all

pretty much a guessing game because they cannot pin point the

monster. What is it really? Several answers are: it is too much

substance P in the spinal fluid, it is autoimmune, it is not

autoimmune it is a disease of the nervous system, it is toxins, it is

a hidden virus they can't find, it is a mycoplasma, it is

inflammatory in nature, it is not inflammatory, etc. etc. etc.

>

> I want to know for sure how they know the potential fatality of

this illness? Ok, maybe it won't keel us over right away. Maybe it

can. However, I suppose that so many of us have suffered for so

many years and did not die from it. But think of it this way, fibro

puts some people in bed for good. (some, not all). When you go to

bed and can't hardly move and cannot care for yourself anymore, then

the secondary health problems come into play. Just the immobility is

dangerous to anyone. We are like a car that idles at about 6 or 8

thousand RPM's instead of the healthy 1500 RPM's. Our muscles and

nerves are in full gear and running all the time. If we took a car

and punched the gas until it went into the red zone, it would not

take long for the engine to blow. (just a little analogy). So, they

think our bodies are not wearing out at an abnormal rate??

>

> And why the hell do I feel somedays like I am dying. I feel like

everything in my body is screaming and starting to refuse to

function.. For some it affects our bowels, our bladder/urinary

tract. Fibro does somehow affect the heart too because it has been

documented that alot of us have an irregular heartbeat. (I do). It

affects the brain in that we become so clouded we can hardly

concentrate or remember. It causes unexplained numbness and tingling

that comes and goes at will. And don't forget the unrelenting

pain. And lets mention the fact that people with fibromyalgia more

often than not will get other illnesses that ARE fatal. Seems that

Lupus comes close to going hand in hand with this unidentifiable

crap. (as well as a host of other illnesses). Many people here have

more diagnoses than fibro alone. Alot of those diseases set in AFTER

the fibro went to work on us.

>

> My take on it? They don't know a damn thing about what this is.

They are playing guessing games now. (not to say there is not some

good research now). And it took so long for anyone to believe it

is real that they simply did not care to research it much until

recent years. How many poor souls went to their graves being labeled

a " hypochondriac " ?

>

> I say it is more of a mystery than any other illness I have ever

heard of. I am tired of it for myself and the many other lives it

destroys. I am angry at a beast I cannot even put a identity on.

>

> If I died tomorrow (which I hope I wont).... they could not do

any autopsy to find out if it was fibromyalgia that caused my heart

attack or whatever natural cause they might lay it off to.

>

> I will bet they did not use to think MS could be fatal.

Especially back in the days MS was also a stigma and not proven to be

a REAL disease. And then..... they had to say " OH, we were wrong.

This is a real disease now that we have found some evidence. And by

the way, yeah it can kill you " .

>

> love and hugs,

> Debra V.

>

>

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

> Looking for last minute shopping deals? Find them fast with Yahoo!

Search.

>

>