Re: Chonic Debilitating Disease..............?

[Guest guest]

Hi,

I'm sure that everybody's reaction to Fibro is different, but for me

it has gotten much worse. I started having symptoms when I was 15. It was

painful and made every day things a little harder but it never really stopped

me from doing anything. Now I'm 23. I couldn't finish college and I don't

work. It has pretty much taken over my whole body. If I'm not on any

medication I can barely move. When I get older, if it's worse than it is now

I don't know what I'm going to do.

[Guest guest]

Hi,

I'm sure that everybody's reaction to Fibro is different, but for me

it has gotten much worse. I started having symptoms when I was 15. It was

painful and made every day things a little harder but it never really stopped

me from doing anything. Now I'm 23. I couldn't finish college and I don't

work. It has pretty much taken over my whole body. If I'm not on any

medication I can barely move. When I get older, if it's worse than it is now

I don't know what I'm going to do.

[Guest guest]

Hi,

I'm sure that everybody's reaction to Fibro is different, but for me

it has gotten much worse. I started having symptoms when I was 15. It was

painful and made every day things a little harder but it never really stopped

me from doing anything. Now I'm 23. I couldn't finish college and I don't

work. It has pretty much taken over my whole body. If I'm not on any

medication I can barely move. When I get older, if it's worse than it is now

I don't know what I'm going to do.

[Guest guest]

In a message dated 8/17/2001 2:20:54 PM Pacific Daylight Time,

deban22@... writes:

> PS: -

>

> I just said a little prayer for you that your Fibro gets better

> instead of worse. I know it hurts not to finish college, but maybe

> you can go back some day. I did finish by taking two or three

> classes at the time, but then was never successful in my career. Now

> I wish I hadn't wasted all that time in college and instead had the

> money in the bank!

>

> Deb

>

>

Thank you for being so thoughtful. I have the same regret about college right

now. I really could have used that money for medical expenses

[Guest guest]

In a message dated 8/17/2001 2:20:54 PM Pacific Daylight Time,

deban22@... writes:

> PS: -

>

> I just said a little prayer for you that your Fibro gets better

> instead of worse. I know it hurts not to finish college, but maybe

> you can go back some day. I did finish by taking two or three

> classes at the time, but then was never successful in my career. Now

> I wish I hadn't wasted all that time in college and instead had the

> money in the bank!

>

> Deb

>

>

Thank you for being so thoughtful. I have the same regret about college right

now. I really could have used that money for medical expenses

[Guest guest]

In a message dated 8/17/2001 2:20:54 PM Pacific Daylight Time,

deban22@... writes:

> PS: -

>

> I just said a little prayer for you that your Fibro gets better

> instead of worse. I know it hurts not to finish college, but maybe

> you can go back some day. I did finish by taking two or three

> classes at the time, but then was never successful in my career. Now

> I wish I hadn't wasted all that time in college and instead had the

> money in the bank!

>

> Deb

>

>

Thank you for being so thoughtful. I have the same regret about college right

now. I really could have used that money for medical expenses

[Guest guest]

Sorry, , that you've had such a difficult time with the Fibro

and so early in life. I can't say when the symptoms began for me,

except that looking back in my medical reacords (as I did for my S.S.

claim) I started having some of them at about the age you are now.

Now I have people tell me that at my age (53)I should expect to have

some " aches and pains " , but I know I have them more often and more

severe than most my age. I also know I have a lot less energy. It

hurts to see little old ladies at 75 who could easily kick my ass!

Deb

[Guest guest]

Sorry, , that you've had such a difficult time with the Fibro

and so early in life. I can't say when the symptoms began for me,

except that looking back in my medical reacords (as I did for my S.S.

claim) I started having some of them at about the age you are now.

Now I have people tell me that at my age (53)I should expect to have

some " aches and pains " , but I know I have them more often and more

severe than most my age. I also know I have a lot less energy. It

hurts to see little old ladies at 75 who could easily kick my ass!

Deb

[Guest guest]

Sorry, , that you've had such a difficult time with the Fibro

and so early in life. I can't say when the symptoms began for me,

except that looking back in my medical reacords (as I did for my S.S.

claim) I started having some of them at about the age you are now.

Now I have people tell me that at my age (53)I should expect to have

some " aches and pains " , but I know I have them more often and more

severe than most my age. I also know I have a lot less energy. It

hurts to see little old ladies at 75 who could easily kick my ass!

Deb

[Guest guest]

PS: -

I just said a little prayer for you that your Fibro gets better

instead of worse. I know it hurts not to finish college, but maybe

you can go back some day. I did finish by taking two or three

classes at the time, but then was never successful in my career. Now

I wish I hadn't wasted all that time in college and instead had the

money in the bank!

Deb

[Guest guest]

PS: -

I just said a little prayer for you that your Fibro gets better

instead of worse. I know it hurts not to finish college, but maybe

you can go back some day. I did finish by taking two or three

classes at the time, but then was never successful in my career. Now

I wish I hadn't wasted all that time in college and instead had the

money in the bank!

Deb

[Guest guest]

PS: -

I just said a little prayer for you that your Fibro gets better

instead of worse. I know it hurts not to finish college, but maybe

you can go back some day. I did finish by taking two or three

classes at the time, but then was never successful in my career. Now

I wish I hadn't wasted all that time in college and instead had the

money in the bank!

Deb

[Guest guest]

Yes, I agree that everyone has something different to add about this disease,

but I had had the symptoms for a very long time, and was diagnosed almost 9

years ago. Since then the symptoms have gotten much, much, much worse. I am

in a wheelchair part-time due to the fact that I can't walk to the restroom

half the time let alone anywhere else...I haven't worked for quite sometime,

and my income was very much counted on, as we had new vehicles, a new house,

etc., now we are having to file bankruptcy due to all of that mess, and, it's

just embarrassing, and awful. I don't want people to think of me as someone

who shirks responsibility, and doesn't pay my bills, that's not true. Anyway,

I am now finally on disability, (Thank you Jesus) and the doctor's say that

it is not a debilitating disease and that usually within three years of

treatment that a person will be well enough to go back to work...well, it has

not gotten better, and at this point I don't expect it to. I can say that I

do have periods of about two months where I feel great, and then about six

months that I can barely get out of bed....it's a vicious cycle...Good Luck!

Shay

Join my new Diabetic Recipes group @

http://groups.yahoo.com/group/Recipes4Diabetes

God Bless You All, Shay/Shalynn and the rescue gang;

Max, Samson I, Samson II, Walter, Bogie, Jake, Ralph, Curly (Tazz),

Sebastian, Tina Marie, Bear & Zeuss

[Guest guest]

Yes, I agree that everyone has something different to add about this disease,

but I had had the symptoms for a very long time, and was diagnosed almost 9

years ago. Since then the symptoms have gotten much, much, much worse. I am

in a wheelchair part-time due to the fact that I can't walk to the restroom

half the time let alone anywhere else...I haven't worked for quite sometime,

and my income was very much counted on, as we had new vehicles, a new house,

etc., now we are having to file bankruptcy due to all of that mess, and, it's

just embarrassing, and awful. I don't want people to think of me as someone

who shirks responsibility, and doesn't pay my bills, that's not true. Anyway,

I am now finally on disability, (Thank you Jesus) and the doctor's say that

it is not a debilitating disease and that usually within three years of

treatment that a person will be well enough to go back to work...well, it has

not gotten better, and at this point I don't expect it to. I can say that I

do have periods of about two months where I feel great, and then about six

months that I can barely get out of bed....it's a vicious cycle...Good Luck!

Shay

Join my new Diabetic Recipes group @

http://groups.yahoo.com/group/Recipes4Diabetes

God Bless You All, Shay/Shalynn and the rescue gang;

Max, Samson I, Samson II, Walter, Bogie, Jake, Ralph, Curly (Tazz),

Sebastian, Tina Marie, Bear & Zeuss

[Guest guest]

Yes, I agree that everyone has something different to add about this disease,

but I had had the symptoms for a very long time, and was diagnosed almost 9

years ago. Since then the symptoms have gotten much, much, much worse. I am

in a wheelchair part-time due to the fact that I can't walk to the restroom

half the time let alone anywhere else...I haven't worked for quite sometime,

and my income was very much counted on, as we had new vehicles, a new house,

etc., now we are having to file bankruptcy due to all of that mess, and, it's

just embarrassing, and awful. I don't want people to think of me as someone

who shirks responsibility, and doesn't pay my bills, that's not true. Anyway,

I am now finally on disability, (Thank you Jesus) and the doctor's say that

it is not a debilitating disease and that usually within three years of

treatment that a person will be well enough to go back to work...well, it has

not gotten better, and at this point I don't expect it to. I can say that I

do have periods of about two months where I feel great, and then about six

months that I can barely get out of bed....it's a vicious cycle...Good Luck!

Shay

Join my new Diabetic Recipes group @

http://groups.yahoo.com/group/Recipes4Diabetes

God Bless You All, Shay/Shalynn and the rescue gang;

Max, Samson I, Samson II, Walter, Bogie, Jake, Ralph, Curly (Tazz),

Sebastian, Tina Marie, Bear & Zeuss

[Guest guest]

> ...that will only get worse? This is the first time I've hear

> someone say this. Seems I've read in the literature it usually does

> not get worse.

Deb,

I've heard the same thing, and I think others on this list have been told

this by their doctors.

I do not believe there has been enough research done on this illness to

determine whether or not it gets worse with time--the diagnosis itself has

only existed for what? about 10 years?

Logic tells me that it must get worse. I mean, after years of not getting

restful, restorative sleep, the body will progressively lose its ability to

compensate. After years of continual muscle contractions, the muscles

themselves might become distorted, and they certainly will distort the

skeletal system, don't you think?

All I know is, my symptoms have gotten worse over the years, although I

still hold out hope for relief!

Hugs,

ee

[Guest guest]

Shay

Where does your Doctor get his/her information from

that in 3 years you could be well enough to be back at

work. I started with pain and problems from birth

because of the traumatic birth I went through. I have

never known life without pain and some form of

disability that seem to happen for no reason. I could

awake in the morning injured and not know how, or have

chronic pain without any just cause. Over the years

this gradually got worse, unable to socialise, and now

single at 50. I would love to be able to work again,

as I did once and had to retire over 15 years ago as

things became worse and more and more things happened

to me. But I am just one case, as some have said they

found some improvement with medication to take away

the pain. I haven't. I am not despondent about my

illness as I made up my mind to be able to enjoy my

life and have others accept me, I must have a positive

attitude about life. I read Dale Carnegie's book " How

to Stop Worrying and Start Living " and I turned my

life around and live life in that I do what I can when

I can and when I can't, I don't let it get to me.

I hope this helps. And for those who do see some

improvement I can only say I am truly glad for you but

remember that we are not all alike, so think on of

those of us who have no improvement but get worse.

Don't be too quick to say that we can improve, because

there are a great many of us who will get worse and

not better. Make sure that your Doctors understand

this as well so they don't pass on false hope.

God bless you all

Lorraine UK

--- ShayPugHugs@... wrote:

<HR>

<html><body>

<tt>

Yes, I agree that everyone has something different to

add about this disease, <BR>

but I had had the symptoms for a very long time, and

was diagnosed almost 9 <BR>

years ago.  Since then the symptoms have gotten much,

much, much worse.  I am <BR>

in a wheelchair part-time due to the fact that I can't

walk to the restroom <BR>

half the time let alone anywhere else...I haven't

worked for quite sometime, <BR>

and my income was very much counted on, as we had new

vehicles, a new house, <BR>

etc., now we are having to file bankruptcy due to all

of that mess, and, it's <BR>

just embarrassing, and awful.  I don't want people to

think of me as someone <BR>

who shirks responsibility, and doesn't pay my bills,

that's not true. Anyway, <BR>

I am now finally on disability, (Thank you Jesus) and

the doctor's say that <BR>

it is not a debilitating disease and that usually

within three years of <BR>

treatment that a person will be well enough to go back

to work...well, it has <BR>

not gotten better, and at this point I don't expect it

to.  I can say that I <BR>

do have periods of about two months where I feel

great, and then about six <BR>

months that I can barely get out of bed....it's a

vicious cycle...Good Luck!  <BR>

Shay<BR>

Join my new Diabetic Recipes group @ <BR>

<a

href= " http://groups.yahoo.com/group/Recipes4Diabetes " >http://groups.yahoo.com/gr\

oup/Recipes4Diabetes</a>

<BR>

God Bless You All, Shay/Shalynn and the rescue

gang;<BR>

Max, Samson I, Samson II, Walter, Bogie, Jake, Ralph,

Curly (Tazz), <BR>

Sebastian, Tina Marie, Bear & Zeuss<BR>

<BR>

<BR>

[Non-text portions of this message have been

removed]<BR>

<BR>

</tt>

<br>

<!-- |**|begin egp html banner|**| -->

<table border=0 cellspacing=0 cellpadding=2>

<tr bgcolor=#FFFFCC>

<td align=center><font size= " -1 "

color=#003399><b>

[Guest guest]

Shay

Where does your Doctor get his/her information from

that in 3 years you could be well enough to be back at

work. I started with pain and problems from birth

because of the traumatic birth I went through. I have

never known life without pain and some form of

disability that seem to happen for no reason. I could

awake in the morning injured and not know how, or have

chronic pain without any just cause. Over the years

this gradually got worse, unable to socialise, and now

single at 50. I would love to be able to work again,

as I did once and had to retire over 15 years ago as

things became worse and more and more things happened

to me. But I am just one case, as some have said they

found some improvement with medication to take away

the pain. I haven't. I am not despondent about my

illness as I made up my mind to be able to enjoy my

life and have others accept me, I must have a positive

attitude about life. I read Dale Carnegie's book " How

to Stop Worrying and Start Living " and I turned my

life around and live life in that I do what I can when

I can and when I can't, I don't let it get to me.

I hope this helps. And for those who do see some

improvement I can only say I am truly glad for you but

remember that we are not all alike, so think on of

those of us who have no improvement but get worse.

Don't be too quick to say that we can improve, because

there are a great many of us who will get worse and

not better. Make sure that your Doctors understand

this as well so they don't pass on false hope.

God bless you all

Lorraine UK

--- ShayPugHugs@... wrote:

<HR>

<html><body>

<tt>

Yes, I agree that everyone has something different to

add about this disease, <BR>

but I had had the symptoms for a very long time, and

was diagnosed almost 9 <BR>

years ago.  Since then the symptoms have gotten much,

much, much worse.  I am <BR>

in a wheelchair part-time due to the fact that I can't

walk to the restroom <BR>

half the time let alone anywhere else...I haven't

worked for quite sometime, <BR>

and my income was very much counted on, as we had new

vehicles, a new house, <BR>

etc., now we are having to file bankruptcy due to all

of that mess, and, it's <BR>

just embarrassing, and awful.  I don't want people to

think of me as someone <BR>

who shirks responsibility, and doesn't pay my bills,

that's not true. Anyway, <BR>

I am now finally on disability, (Thank you Jesus) and

the doctor's say that <BR>

it is not a debilitating disease and that usually

within three years of <BR>

treatment that a person will be well enough to go back

to work...well, it has <BR>

not gotten better, and at this point I don't expect it

to.  I can say that I <BR>

do have periods of about two months where I feel

great, and then about six <BR>

months that I can barely get out of bed....it's a

vicious cycle...Good Luck!  <BR>

Shay<BR>

Join my new Diabetic Recipes group @ <BR>

<a

href= " http://groups.yahoo.com/group/Recipes4Diabetes " >http://groups.yahoo.com/gr\

oup/Recipes4Diabetes</a>

<BR>

God Bless You All, Shay/Shalynn and the rescue

gang;<BR>

Max, Samson I, Samson II, Walter, Bogie, Jake, Ralph,

Curly (Tazz), <BR>

Sebastian, Tina Marie, Bear & Zeuss<BR>

<BR>

<BR>

[Non-text portions of this message have been

removed]<BR>

<BR>

</tt>

<br>

<!-- |**|begin egp html banner|**| -->

<table border=0 cellspacing=0 cellpadding=2>

<tr bgcolor=#FFFFCC>

<td align=center><font size= " -1 "

color=#003399><b>

[Guest guest]

Mine has gotten worse over time, also. In the last 10 years the pain has spread

from upper back to (now) every muscle in my body. all the way down the arms,

into the fingers; all the way down back & legs, to the top of my feet. Front,

back and head.

Ah, well, I'm glad the Bottoms of my feet don't hurt, that might become a major

problem. At least I can still walk.

Blessings to everyone from Iris.

ee Meade wrote: > ...that will only get worse?

This is the first time I've hear

> someone say this. Seems I've read in the literature it usually does

> not get worse.

Deb,

I've heard the same thing, and I think others on this list have been told

this by their doctors.

I do not believe there has been enough research done on this illness to

determine whether or not it gets worse with time--the diagnosis itself has

only existed for what? about 10 years?

Logic tells me that it must get worse. I mean, after years of not getting

restful, restorative sleep, the body will progressively lose its ability to

compensate. After years of continual muscle contractions, the muscles

themselves might become distorted, and they certainly will distort the

skeletal system, don't you think?

All I know is, my symptoms have gotten worse over the years, although I

still hold out hope for relief!

Hugs,

ee

[Guest guest]

Mine has gotten worse over time, also. In the last 10 years the pain has spread

from upper back to (now) every muscle in my body. all the way down the arms,

into the fingers; all the way down back & legs, to the top of my feet. Front,

back and head.

Ah, well, I'm glad the Bottoms of my feet don't hurt, that might become a major

problem. At least I can still walk.

Blessings to everyone from Iris.

ee Meade wrote: > ...that will only get worse?

This is the first time I've hear

> someone say this. Seems I've read in the literature it usually does

> not get worse.

Deb,

I've heard the same thing, and I think others on this list have been told

this by their doctors.

I do not believe there has been enough research done on this illness to

determine whether or not it gets worse with time--the diagnosis itself has

only existed for what? about 10 years?

Logic tells me that it must get worse. I mean, after years of not getting

restful, restorative sleep, the body will progressively lose its ability to

compensate. After years of continual muscle contractions, the muscles

themselves might become distorted, and they certainly will distort the

skeletal system, don't you think?

All I know is, my symptoms have gotten worse over the years, although I

still hold out hope for relief!

Hugs,

ee

[Guest guest]

I have only heard of maybe 5 people out of hundreds

that have gotten better from this disease. It is only

logical as one gets older and the body gets weaker

from age, that the symptoms will get worse. I have

had CFS/Fibro since I was 17 and when I was very

young, I had many remissions but since the age of 38,

I have been in a 12 year relapse that has still not

ended and keeps getting worse. I take excellent care

of myself and have good doctors but I can see the

progressive deterioration especially after I went

through Menopause. So, it's better not to give

anyone false hope although I guess every now and then

a miracle may happen.

-Lynne

--- ee Meade wrote:

> > ...that will only get worse? This is the first

> time I've hear

> > someone say this. Seems I've read in the

> literature it usually does

> > not get worse.

>

> Deb,

>

> I've heard the same thing, and I think others on

> this list have been told

> this by their doctors.

>

> I do not believe there has been enough research done

> on this illness to

> determine whether or not it gets worse with

> time--the diagnosis itself has

> only existed for what? about 10 years?

>

> Logic tells me that it must get worse. I mean,

> after years of not getting

> restful, restorative sleep, the body will

> progressively lose its ability to

> compensate. After years of continual muscle

> contractions, the muscles

> themselves might become distorted, and they

> certainly will distort the

> skeletal system, don't you think?

>

> All I know is, my symptoms have gotten worse over

> the years, although I

> still hold out hope for relief!

>

> Hugs,

> ee

>

>

>

__________________________________________________

[Guest guest]

I have only heard of maybe 5 people out of hundreds

that have gotten better from this disease. It is only

logical as one gets older and the body gets weaker

from age, that the symptoms will get worse. I have

had CFS/Fibro since I was 17 and when I was very

young, I had many remissions but since the age of 38,

I have been in a 12 year relapse that has still not

ended and keeps getting worse. I take excellent care

of myself and have good doctors but I can see the

progressive deterioration especially after I went

through Menopause. So, it's better not to give

anyone false hope although I guess every now and then

a miracle may happen.

-Lynne

--- ee Meade wrote:

> > ...that will only get worse? This is the first

> time I've hear

> > someone say this. Seems I've read in the

> literature it usually does

> > not get worse.

>

> Deb,

>

> I've heard the same thing, and I think others on

> this list have been told

> this by their doctors.

>

> I do not believe there has been enough research done

> on this illness to

> determine whether or not it gets worse with

> time--the diagnosis itself has

> only existed for what? about 10 years?

>

> Logic tells me that it must get worse. I mean,

> after years of not getting

> restful, restorative sleep, the body will

> progressively lose its ability to

> compensate. After years of continual muscle

> contractions, the muscles

> themselves might become distorted, and they

> certainly will distort the

> skeletal system, don't you think?

>

> All I know is, my symptoms have gotten worse over

> the years, although I

> still hold out hope for relief!

>

> Hugs,

> ee

>

>

>

__________________________________________________

[Guest guest]

I have only heard of maybe 5 people out of hundreds

that have gotten better from this disease. It is only

logical as one gets older and the body gets weaker

from age, that the symptoms will get worse. I have

had CFS/Fibro since I was 17 and when I was very

young, I had many remissions but since the age of 38,

I have been in a 12 year relapse that has still not

ended and keeps getting worse. I take excellent care

of myself and have good doctors but I can see the

progressive deterioration especially after I went

through Menopause. So, it's better not to give

anyone false hope although I guess every now and then

a miracle may happen.

-Lynne

--- ee Meade wrote:

> > ...that will only get worse? This is the first

> time I've hear

> > someone say this. Seems I've read in the

> literature it usually does

> > not get worse.

>

> Deb,

>

> I've heard the same thing, and I think others on

> this list have been told

> this by their doctors.

>

> I do not believe there has been enough research done

> on this illness to

> determine whether or not it gets worse with

> time--the diagnosis itself has

> only existed for what? about 10 years?

>

> Logic tells me that it must get worse. I mean,

> after years of not getting

> restful, restorative sleep, the body will

> progressively lose its ability to

> compensate. After years of continual muscle

> contractions, the muscles

> themselves might become distorted, and they

> certainly will distort the

> skeletal system, don't you think?

>

> All I know is, my symptoms have gotten worse over

> the years, although I

> still hold out hope for relief!

>

> Hugs,

> ee

>

>

>

__________________________________________________

[Guest guest]

Hi Lorraine, I've had several doctors tell me this, and they all say that it

is in their experience....and then of course they all tell me that I have the

worse case they've ever senn etc., etc. lol Oh well, you know how doctors

are...but I do have the best doctor...I just love him...my sister-in-law has

it as well and sees the same doctor, and she has gotten better. I'm very

happy for her, but I think doctors need to realize that we are not all alike

and they cannot group us together just because we have a disease of the same

name...Good luck and get well soon all. Shay

Join my new Diabetic Recipes group @

http://groups.yahoo.com/group/Recipes4Diabetes

God Bless You All, Shay/Shalynn and the rescue gang;

Max, Samson I, Samson II, Walter, Bogie, Jake, Ralph, Curly (Tazz),

Sebastian, Tina Marie, Bear & Zeuss

[Guest guest]

Deborah wrote:

>

> ...that will only get worse? This is the first time I've hear

> someone say this. Seems I've read in the literature it usually does

> not get worse.

I think most people on these boards will say it does get worse as time

goes by. For some people it doesn't get any worse. Another thing to

remember is that most of the people on these boards aren't doing well,

they're looking for support, help with their problems, looking for

answers, as a general rule, they aren't having an easy time with their

illnesses (as if anyone with these illnesses has an " easy " time). I

have a friend who has had fibro for years and years. She has basically

stayed at the same level for the whole time. She is still working a 40

hour week. She isn't on any support group. I've only had the full

fibro symptoms for about a year, although I've had some symptoms for

several years. I've gotten worse. I'm on the boards. See what I'm

trying to say? A lot of the people who may be staying the same may not

feel the need for a support group, so you don't see those people,

instead you see those of us who have gotten worse and feel the need for

a support group.

Darcy