Re: Re: Think on this..... Fibromyalgia - To

[Guest guest]

, that was a very descriptive letter. Only the ones here can understand

this. (or a fellow fibromite).

love ya,

Debra V.

Andersen wrote:

Write on, !!!! That about sums it up.

/Mi

Re: Think on this..... Fibromyalgia WONT kill us??????

You have a valid and terrific point, Debra V. I must admit that. If I

honestly documented my day to day condition, I'd probably cry.

Like many, if not most in this group I have days where:

I can't eat much. (happens a whole lot)

I can't move beyond a few inches one way or another.

I can't think more than one sentence ahead of what I'm saying.

I can't remember the simplest of tasks, from my best friend's

telephone number to my child's birthday on occasion.

I feel everything, in supersonic stereo.

Or, I may be too numb to feel anything, which is scarier.

When I do eat, sometimes it makes me feel worse, others it makes me

better.

When I do get " real " sleep, I feel as though I need more.

When I rest, all I do is get more tired.

When I want to do something, it takes the will of Job to manage it.

When I go and do something, I feel like I went ten rounds with The

Incredible Hulk and The Thing for days afterwards.

When I describe how I feel, people snort in disgust and say I'm lazy.

I feel that IF I could exercise without it causing more problems I

would.

It hurts when people tell me, you need to get out more and walk or

something.

I feel that IF I could do that, I sure as heck wouldn't need a

support group.

This is why I fear going to the doctor.

This is one reason, I literally stopped going, because the last one

told me I needed to exercise. I would if my body would let me, people.

A. Neff

>

> 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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