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

[Guest guest]

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]

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

>

> 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]

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.

>

>

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

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

Search.

>

>

[Guest guest]

Debra,

You raise some very valid points! Let's talk about the medications

we take. Some of them are extremely addictive *or* cause other organ

issues (liver toxicity). Or how about the meds that " slow " down some

of our biological functions? Then we have to take other meds to keep

from having constipation issues or IBS issues. It's a no-win

situation in so many cases.

My personal favorite is the fact that for whatever reason, I am

having a problem with stairs now (thank GOD we have a ranch). Also,

if I have to get down on the floor for any reason (like to wipe up

an " oops " puddle from my aging dog), I CANNOT get up! I have to

crawl over to a stable piece of furniture and then pull myself up.

So how do we know that it won't eventually kill us? We don't. But I

agree that some folks may decide to give up the ghost so to speak,

especially if theirs gets progressively worse and they cannot take it

any more.

I mean, we put on happy faces and say " I'm fine " to our familys, co-

workers (if we are still able to work) and other folks we know, when

our backs are killing us, our arms go numb when we put them in

certain positions, our fingers sometimes cramp up for no reason, we

go to walk and find that one leg or the other isn't " there " and fall.

And yet, those we love and are around think we are making this stuff

up? I purposely choose to fall on my hip - sure I do! I live for the

back spasms that are so severe I am bent over at the waist and

praying that they stop and I can remember where I put my pain meds!

And having my hands decide to do what they want to do? Oh that's the

highlight of my day! Oh and I forgot - no pun intended - I just LOVE

not remembering conversations I've had with my DH! Until I was

diagnosed I know he thought I was ignoring him! But unless it's

written down these days, I don't remember it.

So yes Debra, I think this disease is slowly killing us. And maybe,

five or ten or even twenty years down the road they'll decide what

causes it.....I personally think it should be in the autoimmune

category or the CNS category, because the pain is mercurial....we can

go days or maybe longer feeling good or even so-so and then

bam....the weather changes or we push too hard or whatever and we are

crippled up again. And for some, the pain never really leaves and

their doctors are stupid and unwilling to find what works.

Gosh....I didn't know all that was in me!

Darlene

>

> 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]

Okay, Debra, could you please stop thinking????!!!! Seriously you are so

right...we just don't know...and yet people think we are fine. It has to be one

of the most frustrating illnessess as it doesn't show anything outwardly. I was

walking way worse than my 97 year old mother today and ready to cry and fall

over from the pain.

Hugs,

/Mi

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

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]

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.

>

>

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

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

Search.

>

>

[Guest guest]

Well said, Darlene,

/Mi

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

Debra,

You raise some very valid points! Let's talk about the medications

we take. Some of them are extremely addictive *or* cause other organ

issues (liver toxicity). Or how about the meds that " slow " down some

of our biological functions? Then we have to take other meds to keep

from having constipation issues or IBS issues. It's a no-win

situation in so many cases.

My personal favorite is the fact that for whatever reason, I am

having a problem with stairs now (thank GOD we have a ranch). Also,

if I have to get down on the floor for any reason (like to wipe up

an " oops " puddle from my aging dog), I CANNOT get up! I have to

crawl over to a stable piece of furniture and then pull myself up.

So how do we know that it won't eventually kill us? We don't. But I

agree that some folks may decide to give up the ghost so to speak,

especially if theirs gets progressively worse and they cannot take it

any more.

I mean, we put on happy faces and say " I'm fine " to our familys, co-

workers (if we are still able to work) and other folks we know, when

our backs are killing us, our arms go numb when we put them in

certain positions, our fingers sometimes cramp up for no reason, we

go to walk and find that one leg or the other isn't " there " and fall.

And yet, those we love and are around think we are making this stuff

up? I purposely choose to fall on my hip - sure I do! I live for the

back spasms that are so severe I am bent over at the waist and

praying that they stop and I can remember where I put my pain meds!

And having my hands decide to do what they want to do? Oh that's the

highlight of my day! Oh and I forgot - no pun intended - I just LOVE

not remembering conversations I've had with my DH! Until I was

diagnosed I know he thought I was ignoring him! But unless it's

written down these days, I don't remember it.

So yes Debra, I think this disease is slowly killing us. And maybe,

five or ten or even twenty years down the road they'll decide what

causes it.....I personally think it should be in the autoimmune

category or the CNS category, because the pain is mercurial....we can

go days or maybe longer feeling good or even so-so and then

bam....the weather changes or we push too hard or whatever and we are

crippled up again. And for some, the pain never really leaves and

their doctors are stupid and unwilling to find what works.

Gosh....I didn't know all that was in me!

Darlene

>

> 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]

My own thoughts on the future of my health is that the Fibro itself

may not be fatal, but the stress factors tied with the inflammation at

some point will overtax my body's ability to cope and I expect that

something will crash, that is -if- nothing else goes wrong between now

and last day. Live it up now, because now will never come again.

[breaks out the box of sparklers and hands them around the room]

[Guest guest]

---Hey Darlene, Ya know what the Dr. who diagnoised me said to me

when he told me??? He said well all the testing, has come back

(Normal). You do exibite all the pressure points on a scale of about

7-8 (I would actually fall to the floor in pain when he would press

one)so I believe that you have Fibromyalgia.. Now the good thing

is...it won't kill you...the bad thing is your going to wish it

would... I have never heard truer words in my life!!!! Hinky

In Fibromyalgia_Support_Group , " Andersen "

wrote:

>

> Well said, Darlene,

> /Mi

> Re: Think on this..... Fibromyalgia WONT kill

us??????

>

>

> Debra,

> You raise some very valid points! Let's talk about the

medications

> we take. Some of them are extremely addictive *or* cause other

organ

> issues (liver toxicity). Or how about the meds that " slow " down

some

> of our biological functions? Then we have to take other meds to

keep

> from having constipation issues or IBS issues. It's a no-win

> situation in so many cases.

>

> My personal favorite is the fact that for whatever reason, I am

> having a problem with stairs now (thank GOD we have a ranch).

Also,

> if I have to get down on the floor for any reason (like to wipe

up

> an " oops " puddle from my aging dog), I CANNOT get up! I have to

> crawl over to a stable piece of furniture and then pull myself

up.

>

> So how do we know that it won't eventually kill us? We don't. But

I

> agree that some folks may decide to give up the ghost so to

speak,

> especially if theirs gets progressively worse and they cannot

take it

> any more.

>

> I mean, we put on happy faces and say " I'm fine " to our familys,

co-

> workers (if we are still able to work) and other folks we know,

when

> our backs are killing us, our arms go numb when we put them in

> certain positions, our fingers sometimes cramp up for no reason,

we

> go to walk and find that one leg or the other isn't " there " and

fall.

>

> And yet, those we love and are around think we are making this

stuff

> up? I purposely choose to fall on my hip - sure I do! I live for

the

> back spasms that are so severe I am bent over at the waist and

> praying that they stop and I can remember where I put my pain

meds!

> And having my hands decide to do what they want to do? Oh that's

the

> highlight of my day! Oh and I forgot - no pun intended - I just

LOVE

> not remembering conversations I've had with my DH! Until I was

> diagnosed I know he thought I was ignoring him! But unless it's

> written down these days, I don't remember it.

>

> So yes Debra, I think this disease is slowly killing us. And

maybe,

> five or ten or even twenty years down the road they'll decide

what

> causes it.....I personally think it should be in the autoimmune

> category or the CNS category, because the pain is mercurial....we

can

> go days or maybe longer feeling good or even so-so and then

> bam....the weather changes or we push too hard or whatever and we

are

> crippled up again. And for some, the pain never really leaves and

> their doctors are stupid and unwilling to find what works.

>

> Gosh....I didn't know all that was in me!

>

> Darlene

>

>

> >

> > 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]

>

>Hello, along with your analogy of will it kill us, one of my sons

asked me the other day if this is hereditary? Anyone know about that,

I haven't heard of it, and never thought to ask my Rheumatologist either.

Just wondered...

Thanks,

Pam

>