Re: Re: Think on this..... Fibromyalgia WONT kill us- ToBonnie

[Guest guest]

I would certainly not tell my kids or anyone it is terminal. Even if I think it

is possible. I understand that children just need to have the minimal

information because we don't want to scare our babies into thinking we are

dying. Chronic... absolutely. But on the brighter side we can also tell them

we will likely have some days that are good or at least better than others.

hugs to ya,

Debra V.

Kate Court wrote:

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.

>

>

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