Re: How to beat the pain cycle~reply to and Karis

[Guest guest]

I recently came on this site to better understand my freind . She

has had FM/CFS and depression for 17 years. It has not been a mild case,

but severe,unable to get out of bed or function at all. She could not

sit at the computer, ride her horse, go on vacations with her husband or

enjoy the youth of her son.I have known her for 5 years and this is how

she has been. She was also always so sick, colds, flu, lots of earaches

and many other type infections. She has never been in a remission from

her pain. I am glad she has not taken my invite to join the group

becasue these words you say would harm her right now very badly. I am

sad that you both feel this way, since the cause is still unknown to say

there is no way out then would mean you know the cause. We have both

done lots of research over the 5 years and had tried many things. I

will certainly not believe her symptoms will come back! Please realize

how powerful your mind can be. Here is a link to one of the many

articles we have read concerning glyconutrients and FM/CFS.

http://www.glycoscience.org/glycoscience/start_frames.wm?FILENAME=G005

And for me personally I would take 5 minutes of pain free living even if

it were to come back. is now riding her horse, traveling with her

husband in his new plane, and just plain old enjoying life again. SHe

still has lots of mental baggage but this is a work in progress. I pray

everyone has an opportunity to live without pain again. K

wrote:

> There is no cure for fibromyalgia ...great that she is having a remission,

> but if the pain never comes back, she didn't have fibromyalgia to begin

> with.

>

>

> http://www.geocities.com/vwjennifer/

> Please spay/neuter your pets!

>

>

>

>

> -----Original Message-----

> From: Kindscher (Charter)

> Sent: Saturday, March 26, 2005 12:55 A

>

> , but I know others who have beat this

> also. It is something you really have to work at and most either give up

> too soon or simply cannot afford all the supplements and treatments. It

> is really a sin that insurance companies will cover drugs which do

> nothing to help the body heal, and will not cover alternative treatments

> that work with the body. I guess they have not figured out yet that they

> would save millions of dollars every year.

> 's main challenge now is learning to be without FM and CFS. She

> has lived so long with this identity and is having a real hard time

> just being .

>

>

>

> 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.

>

>

> Have a nice day everyone.

>

>

>

> *

[Guest guest]

I recently came on this site to better understand my freind . She

has had FM/CFS and depression for 17 years. It has not been a mild case,

but severe,unable to get out of bed or function at all. She could not

sit at the computer, ride her horse, go on vacations with her husband or

enjoy the youth of her son.I have known her for 5 years and this is how

she has been. She was also always so sick, colds, flu, lots of earaches

and many other type infections. She has never been in a remission from

her pain. I am glad she has not taken my invite to join the group

becasue these words you say would harm her right now very badly. I am

sad that you both feel this way, since the cause is still unknown to say

there is no way out then would mean you know the cause. We have both

done lots of research over the 5 years and had tried many things. I

will certainly not believe her symptoms will come back! Please realize

how powerful your mind can be. Here is a link to one of the many

articles we have read concerning glyconutrients and FM/CFS.

http://www.glycoscience.org/glycoscience/start_frames.wm?FILENAME=G005

And for me personally I would take 5 minutes of pain free living even if

it were to come back. is now riding her horse, traveling with her

husband in his new plane, and just plain old enjoying life again. SHe

still has lots of mental baggage but this is a work in progress. I pray

everyone has an opportunity to live without pain again. K

wrote:

> There is no cure for fibromyalgia ...great that she is having a remission,

> but if the pain never comes back, she didn't have fibromyalgia to begin

> with.

>

>

> http://www.geocities.com/vwjennifer/

> Please spay/neuter your pets!

>

>

>

>

> -----Original Message-----

> From: Kindscher (Charter)

> Sent: Saturday, March 26, 2005 12:55 A

>

> , but I know others who have beat this

> also. It is something you really have to work at and most either give up

> too soon or simply cannot afford all the supplements and treatments. It

> is really a sin that insurance companies will cover drugs which do

> nothing to help the body heal, and will not cover alternative treatments

> that work with the body. I guess they have not figured out yet that they

> would save millions of dollars every year.

> 's main challenge now is learning to be without FM and CFS. She

> has lived so long with this identity and is having a real hard time

> just being .

>

>

>

> 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.

>

>

> Have a nice day everyone.

>

>

>

> *

[Guest guest]

I recently came on this site to better understand my freind . She

has had FM/CFS and depression for 17 years. It has not been a mild case,

but severe,unable to get out of bed or function at all. She could not

sit at the computer, ride her horse, go on vacations with her husband or

enjoy the youth of her son.I have known her for 5 years and this is how

she has been. She was also always so sick, colds, flu, lots of earaches

and many other type infections. She has never been in a remission from

her pain. I am glad she has not taken my invite to join the group

becasue these words you say would harm her right now very badly. I am

sad that you both feel this way, since the cause is still unknown to say

there is no way out then would mean you know the cause. We have both

done lots of research over the 5 years and had tried many things. I

will certainly not believe her symptoms will come back! Please realize

how powerful your mind can be. Here is a link to one of the many

articles we have read concerning glyconutrients and FM/CFS.

http://www.glycoscience.org/glycoscience/start_frames.wm?FILENAME=G005

And for me personally I would take 5 minutes of pain free living even if

it were to come back. is now riding her horse, traveling with her

husband in his new plane, and just plain old enjoying life again. SHe

still has lots of mental baggage but this is a work in progress. I pray

everyone has an opportunity to live without pain again. K

wrote:

> There is no cure for fibromyalgia ...great that she is having a remission,

> but if the pain never comes back, she didn't have fibromyalgia to begin

> with.

>

>

> http://www.geocities.com/vwjennifer/

> Please spay/neuter your pets!

>

>

>

>

> -----Original Message-----

> From: Kindscher (Charter)

> Sent: Saturday, March 26, 2005 12:55 A

>

> , but I know others who have beat this

> also. It is something you really have to work at and most either give up

> too soon or simply cannot afford all the supplements and treatments. It

> is really a sin that insurance companies will cover drugs which do

> nothing to help the body heal, and will not cover alternative treatments

> that work with the body. I guess they have not figured out yet that they

> would save millions of dollars every year.

> 's main challenge now is learning to be without FM and CFS. She

> has lived so long with this identity and is having a real hard time

> just being .

>

>

>

> 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.

>

>

> Have a nice day everyone.

>

>

>

> *

[Guest guest]

,

I do not know where you feel that my words ( or 's ) were hurtful, I have reread my post and I simply stated that we know FMS is a neurological illness which can go into remission for short or long periods at a time, but always comes back.

I am sorry if you feel this is mean spirited, but it is the truth, and it is a "mean reality" that we live with each and every day. You do not have to live personally with this as so many do, so, forgive me, but I really am unsure that you are in a position to be so indignant. I am confident that watching your friend being so ill is heartbreaking and very difficult, but it is not the same as being the one in that bed.

I also said that I am glad your friend is doing better, that I just worry because I know that remissions do Not last forever. I am also aware of affirmations, hypnosis, and mind over matter ways of thinking, and even though I agree to a point, please understand that this illness is not as simple as that. If it were that simple - hundreds of thousands of sufferers world wide would simply "think positively" and all would be okay.

Once again, I am glad your friend is enjoying her life once again, and able to ride her horse and jet-set with her husband in his new plane,, I would love to be able to walk from one end of my apartment to the other without being in agony, or be able to stand for ten minutes and do my dishes, or even walk to the corner store.. and I know that for Myself, as I said, I don't know if I would rather be five minutes without pain - only to have it back again - would be like a cruel joke. Which is what I said in my former post.. I appreciate that you can believe it is as simple as that. But let me tell you, as one who is a single mother and lives with chronic pain around the clock - it is not that simple.

Karis

Re: How to beat the pain cycle~reply to and Karis

I recently came on this site to better understand my freind . She has had FM/CFS and depression for 17 years. It has not been a mild case, but severe,unable to get out of bed or function at all. She could not sit at the computer, ride her horse, go on vacations with her husband or enjoy the youth of her son.I have known her for 5 years and this is how she has been. She was also always so sick, colds, flu, lots of earaches and many other type infections. She has never been in a remission from her pain. I am glad she has not taken my invite to join the group becasue these words you say would harm her right now very badly. I am sad that you both feel this way, since the cause is still unknown to say there is no way out then would mean you know the cause. We have both done lots of research over the 5 years and had tried many things. I will certainly not believe her symptoms will come back! Please realize how powerful your mind can be. Here is a link to one of the many articles we have read concerning glyconutrients and FM/CFS.http://www.glycoscience.org/glycoscience/start_frames.wm?FILENAME=G005And for me personally I would take 5 minutes of pain free living even if it were to come back. is now riding her horse, traveling with her husband in his new plane, and just plain old enjoying life again. SHe still has lots of mental baggage but this is a work in progress. I pray everyone has an opportunity to live without pain again. K wrote:> There is no cure for fibromyalgia ...great that she is having a remission,> but if the pain never comes back, she didn't have fibromyalgia to begin> with.> > > http://www.geocities.com/vwjennifer/> Please spay/neuter your pets!> > > > > -----Original Message-----> From: Kindscher (Charter) > Sent: Saturday, March 26, 2005 12:55 A> > , but I know others who have beat this> also. It is something you really have to work at and most either give up> too soon or simply cannot afford all the supplements and treatments. It> is really a sin that insurance companies will cover drugs which do> nothing to help the body heal, and will not cover alternative treatments> that work with the body. I guess they have not figured out yet that they> would save millions of dollars every year.> 's main challenge now is learning to be without FM and CFS. She> has lived so long with this identity and is having a real hard time> just being .> > > > 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.> > > Have a nice day everyone.> > > > *

[Guest guest]

I have to say something here about the " mind over matter issue " . First

of all, it's not going to " cure " you of fibro. But I will say that

every single person with fibromyalgia that gets up every day despite

the pain, those of us that still work full time, despite being in pain

the entire day at work, those of us with kids that still sit through

school plays, still travel two hours one way to hear our chidren play

in a concert while still in constant pain... every one of the

activities that we force outself to participant in despite being in

constant pain is because of mind over matter.

It would be so much easier to just give up and stay at home or stay in

bed all day and not face a day full of activities, responsibilities

and errands while dealing with the pain. " mind over matter " can't cure

our fibro, but it is perhaps the strongest thing we have that helps us

continue to live our life as fully as we can WITH the fibro.

Just my two cents worth

N.

I also said that I am glad your friend is doing better, that I just

worry because I know that remissions do Not last forever. I am also

aware of affirmations, hypnosis, and mind over matter ways of

thinking, and even though I agree to a point, please understand that

this illness is not as simple as that. If it were that simple -

hundreds of thousands of sufferers world wide would simply " think

positively " and all would be okay.

> Karis

> Re: How to beat the pain cycle~reply to

and Karis

Please realize

> how powerful your mind can be.

[Guest guest]

I have to say something here about the " mind over matter issue " . First

of all, it's not going to " cure " you of fibro. But I will say that

every single person with fibromyalgia that gets up every day despite

the pain, those of us that still work full time, despite being in pain

the entire day at work, those of us with kids that still sit through

school plays, still travel two hours one way to hear our chidren play

in a concert while still in constant pain... every one of the

activities that we force outself to participant in despite being in

constant pain is because of mind over matter.

It would be so much easier to just give up and stay at home or stay in

bed all day and not face a day full of activities, responsibilities

and errands while dealing with the pain. " mind over matter " can't cure

our fibro, but it is perhaps the strongest thing we have that helps us

continue to live our life as fully as we can WITH the fibro.

Just my two cents worth

N.

I also said that I am glad your friend is doing better, that I just

worry because I know that remissions do Not last forever. I am also

aware of affirmations, hypnosis, and mind over matter ways of

thinking, and even though I agree to a point, please understand that

this illness is not as simple as that. If it were that simple -

hundreds of thousands of sufferers world wide would simply " think

positively " and all would be okay.

> Karis

> Re: How to beat the pain cycle~reply to

and Karis

Please realize

> how powerful your mind can be.

[Guest guest]

I have to say something here about the " mind over matter issue " . First

of all, it's not going to " cure " you of fibro. But I will say that

every single person with fibromyalgia that gets up every day despite

the pain, those of us that still work full time, despite being in pain

the entire day at work, those of us with kids that still sit through

school plays, still travel two hours one way to hear our chidren play

in a concert while still in constant pain... every one of the

activities that we force outself to participant in despite being in

constant pain is because of mind over matter.

It would be so much easier to just give up and stay at home or stay in

bed all day and not face a day full of activities, responsibilities

and errands while dealing with the pain. " mind over matter " can't cure

our fibro, but it is perhaps the strongest thing we have that helps us

continue to live our life as fully as we can WITH the fibro.

Just my two cents worth

N.

I also said that I am glad your friend is doing better, that I just

worry because I know that remissions do Not last forever. I am also

aware of affirmations, hypnosis, and mind over matter ways of

thinking, and even though I agree to a point, please understand that

this illness is not as simple as that. If it were that simple -

hundreds of thousands of sufferers world wide would simply " think

positively " and all would be okay.

> Karis

> Re: How to beat the pain cycle~reply to

and Karis

Please realize

> how powerful your mind can be.

[Guest guest]

<snip>

It would be so much easier to just give up and stay at home or stay inbed all day and not face a day full of activities, responsibilitiesand errands while dealing with the pain. "mind over matter" can't cureour fibro, but it is perhaps the strongest thing we have that helps uscontinue to live our life as fully as we can WITH the fibro. <snip>

Hi ,

I fully agree that there comes a point when we have no other choice as adults but to get up and do the things, which are necessary, and yes, to a certain degree it can be considered mind over matter. However, unfortunately not all things are created equally. I for one, have FMS-CFS/ME, RLS, Sciatica, PTSD, OA, OAB, Depression, Chronic Insomnia, etc etc etc.

I live with chronic pain around the clock - excruciating pain to where I take up to 33 pills/day combined prescription and supplements, in Addition to wearing a Morphine based, Patch 24/7. And STILL having breakthrough pain.

I think it is wonderful that some of us are able to get up and goto work, however, that unfortunately is not the case for many of us, I for one, had to shut down my business years ago, because I could Not get up and do what was necessary to keep it running. I am now at a stage where I am barely able to run my home and thank God my daughter is 15 and not 5, because I would be in serious trouble with a child so young, as a single mother.

I have recently had to hire a cleaning lady to come in and do the floors and bathroom twice a month. So again, I appreciate that 'some' FMS'ers are able to get up and push through the pain and goto work... but others, who have FMS and 99 other illnesses and accompanying symptoms, aren't so fortunate.

That is the sad and unfortunate truth about this disease, one person is not a blueprint for everyone else. What works for one - does not necessarily work for another.

And when we feel 'good' on Monday - we push ourselves and pay for it for the next three days.

Just my two cents...

Karis

[Guest guest]

<snip>

It would be so much easier to just give up and stay at home or stay inbed all day and not face a day full of activities, responsibilitiesand errands while dealing with the pain. "mind over matter" can't cureour fibro, but it is perhaps the strongest thing we have that helps uscontinue to live our life as fully as we can WITH the fibro. <snip>

Hi ,

I fully agree that there comes a point when we have no other choice as adults but to get up and do the things, which are necessary, and yes, to a certain degree it can be considered mind over matter. However, unfortunately not all things are created equally. I for one, have FMS-CFS/ME, RLS, Sciatica, PTSD, OA, OAB, Depression, Chronic Insomnia, etc etc etc.

I live with chronic pain around the clock - excruciating pain to where I take up to 33 pills/day combined prescription and supplements, in Addition to wearing a Morphine based, Patch 24/7. And STILL having breakthrough pain.

I think it is wonderful that some of us are able to get up and goto work, however, that unfortunately is not the case for many of us, I for one, had to shut down my business years ago, because I could Not get up and do what was necessary to keep it running. I am now at a stage where I am barely able to run my home and thank God my daughter is 15 and not 5, because I would be in serious trouble with a child so young, as a single mother.

I have recently had to hire a cleaning lady to come in and do the floors and bathroom twice a month. So again, I appreciate that 'some' FMS'ers are able to get up and push through the pain and goto work... but others, who have FMS and 99 other illnesses and accompanying symptoms, aren't so fortunate.

That is the sad and unfortunate truth about this disease, one person is not a blueprint for everyone else. What works for one - does not necessarily work for another.

And when we feel 'good' on Monday - we push ourselves and pay for it for the next three days.

Just my two cents...

Karis