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Re: No Worse??

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Hi Kristi,

I am 62 years old and feel as my body ages the fibro gets worse. I think,

as least for me, the two are going hand in hand. I have not lead a very

healthy life so I am sure that is a factor but whatever the reason, more pain

in

more places seems to be a daily occurrence for me. My only suggestion to all

of you youngsters (under 60) is to take good care of yourself - mind and

body as early in your life as you can and continue daily to love yourself for

who and what you are. Makes your older years much easier I would imagine.

Gentle hugs.

Marla

In a message dated 5/2/2008 5:43:29 A.M. Central Daylight Time,

happycricket87@... writes:

Good Morning Everyone,

I have a question... In all the books I've read and web-sites I've

checked out, they say that you will get " no worse " with fibro. Some

days will just be better or worse than others. But my symptoms

gradually kept getting worse, that's why I eventually went to the

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Hi Kristi,

I have read that just about everywhere also. But I don't agree at all.

My symptoms started mild enough, but over time they have worsened. I was dx

in 1990, after having symptoms for about 2 years, and didn't give up too much

right them. Gradually over the past years I've gone from a vibrant working

mother to being almost home bound because of the pain and exhaustion and fog. I

had to stop working almost entirely in 2001. Many new symptoms and places that

hurt have cropped up too.

So I know what you mean. I do think some peoples' don't progress, but mine

has. Some people say it's from being less active that it progresses, but my

Fibromyalgia progressed while I was very active until it almost crippled me.

Marti

Kristi happycricket87@...> wrote:

Good Morning Everyone,

I have a question... In all the books I've read and web-sites I've

checked out, they say that you will get " no worse " with fibro. Some

days will just be better or worse than others. But my symptoms

gradually kept getting worse, that's why I eventually went to the

doctor. And now, every now and then, new symptoms seem to creep up on

me. Does that make sense? Is anyone else experiencing the same things

and did your doctor tell you that you would get " no worse " ?

Thanks and I hope everyone has a great Friday!

Lots of Hugs,

Kristi

Breezewood, PA

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

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> Kristi wrote:

> Good Morning Everyone,

> I have a question... In all the books I've read and web-sites I've

> checked out, they say that you will get " no worse " with fibro. Some

> days will just be better or worse than others. But my symptoms

> gradually kept getting worse, that's why I eventually went to the

> doctor. And now, every now and then, new symptoms seem to creep up on

> me. Does that make sense? Is anyone else experiencing the same things

> and did your doctor tell you that you would get " no worse " ?

> Thanks and I hope everyone has a great Friday!

> Lots of Hugs,

> Kristi

> Breezewood, PA

>

>

The concept of " You will get no worse " is simply a false statement.

Any author or webmaster that -has- Fibromyalgia already has first hand

knowledge of this.

The Fibromyalgia community is in dire need of spokespersons and

activists who -have- the syndrome, not outsiders who extend a

gratuitous " I know how you feel " . There is no way they could even

begin to grasp how you and I feel living with Fibromyalgia.

Throw in the aging process in the mix of Fibromyalgia symptoms, and

sure you might not die directly from Fibromyalgia but the increased

demands and stress factors on your body may " shave off " a few years.

I do everything I can to educate myself on the " facts " of Fibro and

weight them against the " claims " of outsiders, those who do not have

the syndrome and can directly tell who's right.

In a few short years I went from a vibrant active individual to a

virtual " meat sack " .

I really wonder at what point " you won't get any worse " is,...when you

hit rock bottom?

Or you won't get any worse than,...what?

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Hi Kristi,

I find that I have flare ups. So to answer your question for me is

that Yes, it can get worse. It doesn't mean that it will stay that

way and one never knows for how long either.

I think stress plays a major role in that factor, as I'm witnessing

right now.

I try to keep a positive attitude and push myself daily. If I didn't

push myself, I would be content with either sitting on the couch all

day or in bed. I know that isn't healthy and even though my pain is

horrendous most of the time, I get my butt out the door and on with

the day.

Hugs,

Deb in MN

>

> Good Morning Everyone,

> I have a question... In all the books I've read and web-sites I've

> checked out, they say that you will get " no worse " with fibro.

Some

> days will just be better or worse than others. But my symptoms

> gradually kept getting worse, that's why I eventually went to the

> doctor. And now, every now and then, new symptoms seem to creep up

on

> me. Does that make sense? Is anyone else experiencing the same

things

> and did your doctor tell you that you would get " no worse " ?

> Thanks and I hope everyone has a great Friday!

> Lots of Hugs,

> Kristi

> Breezewood, PA

>

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i read in dr.t's book that there is pediatric fibro, just like

juvenile RA, and i believe i had prediatric fibro following some

head/neck trauma and a leg injury. and my pain and fatigue has gotten

worse over the years. i also think the disposition to getting fibro

is inherited, either related to thyroid/adrenal/hypothalmus.

so when someone tells you it doesn't get worse, do they mean that if

you become 100% sleep efficient,get into the restorative stages for

all the time required,if you get all the right meds at 100% effective

doses,if you are able to rest when needed 100% of the time...if we

get 100% of everything we need, then will fibro not get worse?

yeh, they all need to pull their heads out of somewhere their heads

shouldn't be able to reach!

marg

--- In Fibromyalgia_Support_Group , " Loest " >

> Any author or webmaster that -has- Fibromyalgia already has first

hand

> knowledge of this.

>

> The Fibromyalgia community is in dire need of spokespersons and

> activists who -have- the syndrome, not outsiders who extend a

> gratuitous " I know how you feel " . There is no way they could even

> begin to grasp how you and I feel living with Fibromyalgia.

>

> Throw in the aging process in the mix of Fibromyalgia symptoms, and

> sure you might not die directly from Fibromyalgia but the increased

> demands and stress factors on your body may " shave off " a few years.

>

> I do everything I can to educate myself on the " facts " of Fibro and

> weight them against the " claims " of outsiders, those who do not have

> the syndrome and can directly tell who's right.

>

> In a few short years I went from a vibrant active individual to a

> virtual " meat sack " .

>

> I really wonder at what point " you won't get any worse " is,...when

you

> hit rock bottom?

>

> Or you won't get any worse than,...what?

>

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Me too , me too.

Loest boltzero@...> wrote: > Kristi

wrote:

> Good Morning Everyone,

> I have a question... In all the books I've read and web-sites I've

> checked out, they say that you will get " no worse " with fibro. Some

> days will just be better or worse than others. But my symptoms

> gradually kept getting worse, that's why I eventually went to the

> doctor. And now, every now and then, new symptoms seem to creep up on

> me. Does that make sense? Is anyone else experiencing the same things

> and did your doctor tell you that you would get " no worse " ?

> Thanks and I hope everyone has a great Friday!

> Lots of Hugs,

> Kristi

> Breezewood, PA

>

>

The concept of " You will get no worse " is simply a false statement.

Any author or webmaster that -has- Fibromyalgia already has first hand

knowledge of this.

The Fibromyalgia community is in dire need of spokespersons and

activists who -have- the syndrome, not outsiders who extend a

gratuitous " I know how you feel " . There is no way they could even

begin to grasp how you and I feel living with Fibromyalgia.

Throw in the aging process in the mix of Fibromyalgia symptoms, and

sure you might not die directly from Fibromyalgia but the increased

demands and stress factors on your body may " shave off " a few years.

I do everything I can to educate myself on the " facts " of Fibro and

weight them against the " claims " of outsiders, those who do not have

the syndrome and can directly tell who's right.

In a few short years I went from a vibrant active individual to a

virtual " meat sack " .

I really wonder at what point " you won't get any worse " is,...when you

hit rock bottom?

Or you won't get any worse than,...what?

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

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Yes, somehow they did get their heads there and are permanently stuck so it

seems.

Marti

idisnotok idisnotok@...> wrote:

i read in dr.t's book that there is pediatric fibro, just like

juvenile RA, and i believe i had prediatric fibro following some

head/neck trauma and a leg injury. and my pain and fatigue has gotten

worse over the years. i also think the disposition to getting fibro

is inherited, either related to thyroid/adrenal/hypothalmus.

so when someone tells you it doesn't get worse, do they mean that if

you become 100% sleep efficient,get into the restorative stages for

all the time required,if you get all the right meds at 100% effective

doses,if you are able to rest when needed 100% of the time...if we

get 100% of everything we need, then will fibro not get worse?

yeh, they all need to pull their heads out of somewhere their heads

shouldn't be able to reach!

marg

--- In Fibromyalgia_Support_Group , " Loest " >

> Any author or webmaster that -has- Fibromyalgia already has first

hand

> knowledge of this.

>

> The Fibromyalgia community is in dire need of spokespersons and

> activists who -have- the syndrome, not outsiders who extend a

> gratuitous " I know how you feel " . There is no way they could even

> begin to grasp how you and I feel living with Fibromyalgia.

>

> Throw in the aging process in the mix of Fibromyalgia symptoms, and

> sure you might not die directly from Fibromyalgia but the increased

> demands and stress factors on your body may " shave off " a few years.

>

> I do everything I can to educate myself on the " facts " of Fibro and

> weight them against the " claims " of outsiders, those who do not have

> the syndrome and can directly tell who's right.

>

> In a few short years I went from a vibrant active individual to a

> virtual " meat sack " .

>

> I really wonder at what point " you won't get any worse " is,...when

you

> hit rock bottom?

>

> Or you won't get any worse than,...what?

>

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

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yeh, if we ever do go to a doc who doesn't think it's real, we should

carry a large tube of vaseline in our purses or pockets and when the

doc tells us it's all in our heads,or implies it,we should give him/her

THE TUBE!

marg

>

> Yes, somehow they did get their heads there and are permanently stuck

so it seems.

> Marti

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I agree 100% with all Debra said, plus right now I want to crawl out of my body.

My entire body feels like every nerve is being attacked. It can get MUCH worse.

Annie in TN

Debra #402430 tlcsassyscrapper@...> wrote:

Hi Kristi,

I find that I have flare ups. So to answer your question for me is

that Yes, it can get worse. It doesn't mean that it will stay that

way and one never knows for how long either.

I think stress plays a major role in that factor, as I'm witnessing

right now.

I try to keep a positive attitude and push myself daily. If I didn't

push myself, I would be content with either sitting on the couch all

day or in bed. I know that isn't healthy and even though my pain is

horrendous most of the time, I get my butt out the door and on with

the day.

Hugs,

Deb in MN

>

> Good Morning Everyone,

> I have a question... In all the books I've read and web-sites I've

> checked out, they say that you will get " no worse " with fibro.

Some

> days will just be better or worse than others. But my symptoms

> gradually kept getting worse, that's why I eventually went to the

> doctor. And now, every now and then, new symptoms seem to creep up

on

> me. Does that make sense? Is anyone else experiencing the same

things

> and did your doctor tell you that you would get " no worse " ?

> Thanks and I hope everyone has a great Friday!

> Lots of Hugs,

> Kristi

> Breezewood, PA

>

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

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That's a great idea. My pulmanologist doesn't believe in fibro. Basically my

eye specialist doesn't either. They say that the muscle aches and pains are

from my Sarcoidosis. But the Sarcoidosis wasn't dx until last June and I only

had symptoms for about a year before that was figured out. I have an

appointment soon with both doctors and I am planning to ask them how they

explain the brain fog and other symptoms I have that are from Fibromyalgia. I

was dx by a rheumotologis basically because I have all the tender points. That

was in 1990 and it progressively got worse until where I am today. It may

stabilize soon because I'm about to hit rock bottom. I wonder how many people

are permanently disabled from fibromyalgia and out of money. It's amazing that

there are doctors who still don't believe in it. I really want to smack my

pulmanologist, but he is older and I don't want to knock him down.

Marti

idisnotok idisnotok@...> wrote:

yeh, if we ever do go to a doc who doesn't think it's real, we should

carry a large tube of vaseline in our purses or pockets and when the

doc tells us it's all in our heads,or implies it,we should give him/her

THE TUBE!

marg

>

> Yes, somehow they did get their heads there and are permanently stuck

so it seems.

> Marti

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

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sounds like you need to find a couple new Dr. Ones that will listen

to you. My internest sent me to a rheum. My internist suspected

Fibro, but wanted conformation from a rheum.

I would get back to the rheum and ask for some referalls to a new eye

Dr and pulmonologist that would support your diagnosis.

I get so frustrated with the lack of support in the medical field,

sigh.

deb in MN

>

> That's a great idea. My pulmanologist doesn't believe in fibro.

Basically my eye specialist doesn't either. They say that the muscle

aches and pains are from my Sarcoidosis. But the Sarcoidosis wasn't

dx until last June and I only had symptoms for about a year before

that was figured out. I have an appointment soon with both doctors

and I am planning to ask them how they explain the brain fog and

other symptoms I have that are from Fibromyalgia. I was dx by a

rheumotologis basically because I have all the tender points. That

was in 1990 and it progressively got worse until where I am today.

It may stabilize soon because I'm about to hit rock bottom. I wonder

how many people are permanently disabled from fibromyalgia and out of

money. It's amazing that there are doctors who still don't believe

in it. I really want to smack my pulmanologist, but he is older and

I don't want to knock him down.

>

> Marti

>

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Kristi,

Those who say it gets no worse are full of poop. Why is it all of us gradually

have become in so much pain that we must seek out medical help. It gets worse,

no doubt.

Love,

/Mi

No Worse??

Good Morning Everyone,

I have a question... In all the books I've read and web-sites I've

checked out, they say that you will get " no worse " with fibro. Some

days will just be better or worse than others. But my symptoms

gradually kept getting worse, that's why I eventually went to the

doctor. And now, every now and then, new symptoms seem to creep up on

me. Does that make sense? Is anyone else experiencing the same things

and did your doctor tell you that you would get " no worse " ?

Thanks and I hope everyone has a great Friday!

Lots of Hugs,

Kristi

Breezewood, PA

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According to my doctor who has been treating fibro since when alot of

the doctors were saying it was all in our heads ( yes I know some still

do) she says it is very progressive she tells me that she has seen at

least 10 diffrent levels of fibro.

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Kristi ,as i was told , there will be good day and worse days , the only

time i seem not to have to much pain is in the spring and fall ,when the

weather just stays normal , living 3 hours from the Ocean and 3 hours from

the mountains i am just in the middle ,in the summer the Ocean humidity

backs up against the foothills and pain gets worse ,when it gets over the

foothills it also is bad , so i hope the humidity is always down under 30.00

barametric pressure

Ethel

Behold the turtle ,

he who makes slow progress wins the race !

No Worse??

> Good Morning Everyone,

> I have a question... In all the books I've read and web-sites I've

> checked out, they say that you will get " no worse " with fibro. Some

> days will just be better or worse than others. But my symptoms

> gradually kept getting worse, that's why I eventually went to the

> doctor. And now, every now and then, new symptoms seem to creep up on

> me. Does that make sense? Is anyone else experiencing the same things

> and did your doctor tell you that you would get " no worse " ?

> Thanks and I hope everyone has a great Friday!

> Lots of Hugs,

> Kristi

> Breezewood, PA

>

>

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

>

> 1. While it is wonderful to share our experiences with everyone on the

> list as to what treatments do and don't work for us, pls always check with

> your dr. Some treatments are dangerous when given along with other meds

> as well as to certain health conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't matter what it is) pls

> don't be afraid to ask for help. It is the first step to trying to make

> that situation better.

>

> 3. To unsubscribe the e-mail is:

> Fibromyalgia_Support_Group-unsubscribe

>

> 4. Also, it is not uncommon for more than one member to be feeling bad at

> the same time when it comes to flares and b/c of that potentially take

> something another member says the wrong way. And that includes the things

> that one member may find funny (even if it's laughing at fibro itself)

> even though we who deal with illness whether one such as fibro or multiple

> illnesses try to keep a sense of humor.

>

> 5. Pls let's be gentle with each other, and if you are having a bad day

> pls let us know so that we can do our best to offer our support.

>

> Have a nice day everyone.

>

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