Re: Leaving Group - Thanks to All!

[Guest guest]

In a message dated 11/25/2007 9:10:38 P.M. Central Standard Time,

ladybug75901@... writes:

I am sorry you are leaving. This letter seems to indicate that we love being

ill with this thing.

No - not at all! And I'm sorry if I gave you that impression. We are all

victims here but I am more into trying to cure this thing, and not keep

bemoaning the same stuff over and over again. There are answers out there and

it

is up to each person to find their own. Food intolerance is just one part of

the puzzle - there are dozens of other things that contribute to FMS - MY key

trigger was the wheat - for others it may be other things - but every single

bit of research that I have done points to some kind of food intolerance as

being the main culprit in fibro and cfs.

Good luck!

Chris

**************************************Check out AOL's list of 2007's hottest

products.

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[Guest guest]

I am sorry you are leaving. This letter seems to indicate that we love being

ill with this thing. I HAVE done some dietary changes over the last few years.

I actually gave up wheat products during one of my trials.... for 3 or 4

months... and guess what, I was not cured. I still hurt like hell even during

that time. That was only one of the eliminations I made one at a time in my

diet to see if it made a difference. With me, I found nothing to stop the

stiffness and pain and the fog and numbness and tingling.

Debra v.

smalk50 wrote:

Hi,

First, I want to thank everyone in this group for your support and

insights. And, two, thank goodness that this group is here! It has

given solace to so many people who have not been able to find it

elsewhere!

I've come to the point in my health odyssey, where I must move on.

Thanks to a few posts on this forum, they helped me find the missing

link to my personal health puzzle (gluten intolerance), as well as

offering a glimpse into the world of other FMS sufferers. Thank you

all.

When I decided to, " Take Charge of My Health " , 5 long years ago,

after being diagnosed with hepatitis c, little did I know the journey

that I would embark upon.......

I bought books, I searched the net endlessly, I learned to question

my doctor's (and often, go against their opinion!, or find another

doctor..) and learned. I changed my diet - mostly organic raw

veggies (no dressing), lean chicken, limited dairy but with lots of

yogurt, and started taking good, quality vitamins.

Fast forward to this year. I had been maintaining fairly well until

about 6-7 months ago. My Fibro symptoms took over and I became

almost housebound - upset stomach, extreme chemical sensitivities

(hard to go up detergent or bug spray aisles in grocery, etc.), any

loud noise would send my pulse racing, panic attacks, stomach

bloating, always agitated, etc. - all of the symptoms that everyone

on this forum know about.

So, I spent hundreds of dollars on Fibro books. Finally got a very

good doctor. Spent 8-10 hours a day on the net for months. And after

doing all of this and learning which test results most affected fibro

folks(endocrine, adrenal, hormonal, thyroid) , which nutrients and

supplements we were mostly found to be deficient in, etc., I was

fully prepared to have many of the above things wrong when I went in

for the results of my very thorough blood and urine work-up.

All of the above - NORMAL! Blood work - Mostly normal except for a

few glitches due to a genetic defect (that I also found out about),

Cortisol, Growth Hormone, Thyroid, Etc. - Normal, Normal, Normal

However, I did show that I had been exposed (or actually had) many of

the viruses that are often listed in Fibro books and sites

as " Underlying Conditions " , as well as to Mycoplasma (with very low

levels however), as well as my Hepatitis C infection.

So, these tests results kind of pulled the rug out from under me.

None of the stuff that my expensive books and months and months of

research said usually show up in the blood of fibro folks - DIDN'T!

However, the test that some docs consider to be a very good

indication of wheat gluten intolerance, was sky high. And since I

had started feeling dramatically better a few days earlier due to not

eating any wheat (that I know about - the stuffs in everything), I

had to assume that I had either celiac disease or gluten intolerance.

Of course, I've now spent about 100 bucks worth on gluten or celiac

disease books - have bookmarked about 50 sites from the net about

gluten and it's link to disease, and I have come to the conclusion

that most of my problems are being caused by over 50 years of my body

trying to digest something that it lacks an enzyme for. The most

dramatic thing though, is how I feel. I do have fibro symptoms but

not nearly as bad!!!!!!!! I feel clear-headed and not as stiff in the

morning. I walk 2-3 miles every other day with no after-flares. The

noise and smell sensation is much diminished - all of my symptoms are

much better.

And now, thanks to all of this new found knowledge (and feeling

better!) I can look ahead to the future and make plans. Before, I

thought that I had some kind of life-long disorder that no one

understood as well as having hepatitis c. And of course (I thought),

I was probably not going to live that long - or probably want to, if

to live a life with fibro was going to be it. Now, I finally

understand the root cause of all of my problems - and since I can

control it, it gives me hope that I will make a full recovery from

the fibro anyway - the hep c is another story..........

So, that's my story. I love this group but I can no longer stick

around now that I know the truth. It pains me to read some of the

posts now - I want to jump in and push my unpopular opinion in almost

every post. And believe me, telling a group of people to stop eating

wheat or to change their diet on the eve of the Holiday Season

borders on insane......

And the reluctance of many of you to even consider that a food

allergy could be causing fibro (and many other disorders) is very

disheartening to me. I'm sure that a lot of you all are sick of my

posts as well. But it upsets me to hear about how many prescriptions

that most of you are on - one person said that they were taking over

20 prescription meds a day! And to hear over and over again the same

symptoms and the same things that were being posted over two years

ago when I joined this group. NOTHING has changed. The medical

society might know a little bit more about fibro than they did but

still continue to prescribe pill after pill that do little if

anything to get to the root of the problem. It never occurs to them

that a food intolerance could be the problem instead of some other

problem. Take the " new " Fibromyalgia commercial " as an example. It

is put out by Pfizer - the makers of the " only FDA approved

medication for fibro " - Lyrica. Good old Lyrica that seems to work

fine for a few weeks until you have to up the dosage. Then, usually

the side effects are so bad that you can't take it anymore. You also

become addicted to it and must wean yourself off of it or end up in

the emergency room. That's the new FDA approved miracle drug?

That is why it is so important to read and learn on your own. Having

a support group where one can go to complain and whine is great - but

not so great when there are no solutions. And when one is offered,

like my well documented gluten intolerance information, it is scoffed

at or ignored. People don't want to give up their " comfort food " -

when it is the food that is making them sick in the first place.

Good luck to all and thank you for what support I did receive from a

few people on this forum. Thank you all and I wish everyone the best!

in New Orleans

[Guest guest]

I am sorry you are leaving. This letter seems to indicate that we love being

ill with this thing. I HAVE done some dietary changes over the last few years.

I actually gave up wheat products during one of my trials.... for 3 or 4

months... and guess what, I was not cured. I still hurt like hell even during

that time. That was only one of the eliminations I made one at a time in my

diet to see if it made a difference. With me, I found nothing to stop the

stiffness and pain and the fog and numbness and tingling.

Debra v.

smalk50 wrote:

Hi,

First, I want to thank everyone in this group for your support and

insights. And, two, thank goodness that this group is here! It has

given solace to so many people who have not been able to find it

elsewhere!

I've come to the point in my health odyssey, where I must move on.

Thanks to a few posts on this forum, they helped me find the missing

link to my personal health puzzle (gluten intolerance), as well as

offering a glimpse into the world of other FMS sufferers. Thank you

all.

When I decided to, " Take Charge of My Health " , 5 long years ago,

after being diagnosed with hepatitis c, little did I know the journey

that I would embark upon.......

I bought books, I searched the net endlessly, I learned to question

my doctor's (and often, go against their opinion!, or find another

doctor..) and learned. I changed my diet - mostly organic raw

veggies (no dressing), lean chicken, limited dairy but with lots of

yogurt, and started taking good, quality vitamins.

Fast forward to this year. I had been maintaining fairly well until

about 6-7 months ago. My Fibro symptoms took over and I became

almost housebound - upset stomach, extreme chemical sensitivities

(hard to go up detergent or bug spray aisles in grocery, etc.), any

loud noise would send my pulse racing, panic attacks, stomach

bloating, always agitated, etc. - all of the symptoms that everyone

on this forum know about.

So, I spent hundreds of dollars on Fibro books. Finally got a very

good doctor. Spent 8-10 hours a day on the net for months. And after

doing all of this and learning which test results most affected fibro

folks(endocrine, adrenal, hormonal, thyroid) , which nutrients and

supplements we were mostly found to be deficient in, etc., I was

fully prepared to have many of the above things wrong when I went in

for the results of my very thorough blood and urine work-up.

All of the above - NORMAL! Blood work - Mostly normal except for a

few glitches due to a genetic defect (that I also found out about),

Cortisol, Growth Hormone, Thyroid, Etc. - Normal, Normal, Normal

However, I did show that I had been exposed (or actually had) many of

the viruses that are often listed in Fibro books and sites

as " Underlying Conditions " , as well as to Mycoplasma (with very low

levels however), as well as my Hepatitis C infection.

So, these tests results kind of pulled the rug out from under me.

None of the stuff that my expensive books and months and months of

research said usually show up in the blood of fibro folks - DIDN'T!

However, the test that some docs consider to be a very good

indication of wheat gluten intolerance, was sky high. And since I

had started feeling dramatically better a few days earlier due to not

eating any wheat (that I know about - the stuffs in everything), I

had to assume that I had either celiac disease or gluten intolerance.

Of course, I've now spent about 100 bucks worth on gluten or celiac

disease books - have bookmarked about 50 sites from the net about

gluten and it's link to disease, and I have come to the conclusion

that most of my problems are being caused by over 50 years of my body

trying to digest something that it lacks an enzyme for. The most

dramatic thing though, is how I feel. I do have fibro symptoms but

not nearly as bad!!!!!!!! I feel clear-headed and not as stiff in the

morning. I walk 2-3 miles every other day with no after-flares. The

noise and smell sensation is much diminished - all of my symptoms are

much better.

And now, thanks to all of this new found knowledge (and feeling

better!) I can look ahead to the future and make plans. Before, I

thought that I had some kind of life-long disorder that no one

understood as well as having hepatitis c. And of course (I thought),

I was probably not going to live that long - or probably want to, if

to live a life with fibro was going to be it. Now, I finally

understand the root cause of all of my problems - and since I can

control it, it gives me hope that I will make a full recovery from

the fibro anyway - the hep c is another story..........

So, that's my story. I love this group but I can no longer stick

around now that I know the truth. It pains me to read some of the

posts now - I want to jump in and push my unpopular opinion in almost

every post. And believe me, telling a group of people to stop eating

wheat or to change their diet on the eve of the Holiday Season

borders on insane......

And the reluctance of many of you to even consider that a food

allergy could be causing fibro (and many other disorders) is very

disheartening to me. I'm sure that a lot of you all are sick of my

posts as well. But it upsets me to hear about how many prescriptions

that most of you are on - one person said that they were taking over

20 prescription meds a day! And to hear over and over again the same

symptoms and the same things that were being posted over two years

ago when I joined this group. NOTHING has changed. The medical

society might know a little bit more about fibro than they did but

still continue to prescribe pill after pill that do little if

anything to get to the root of the problem. It never occurs to them

that a food intolerance could be the problem instead of some other

problem. Take the " new " Fibromyalgia commercial " as an example. It

is put out by Pfizer - the makers of the " only FDA approved

medication for fibro " - Lyrica. Good old Lyrica that seems to work

fine for a few weeks until you have to up the dosage. Then, usually

the side effects are so bad that you can't take it anymore. You also

become addicted to it and must wean yourself off of it or end up in

the emergency room. That's the new FDA approved miracle drug?

That is why it is so important to read and learn on your own. Having

a support group where one can go to complain and whine is great - but

not so great when there are no solutions. And when one is offered,

like my well documented gluten intolerance information, it is scoffed

at or ignored. People don't want to give up their " comfort food " -

when it is the food that is making them sick in the first place.

Good luck to all and thank you for what support I did receive from a

few people on this forum. Thank you all and I wish everyone the best!

in New Orleans

[Guest guest]

First of all, I personally know that my fibro

IS NOT due to a food intolerence and for someone

to tell me that that must be the cuase of it is just absurb.

This disease is different for everybody.

I am glad to hear that you found te root cause of yours and are taking

steps to improve your life.

I know that NONE of us want to have this disease.

I know my husband DOESNT want me to be inflicted with this dreaded disease,

but for reasons unknown to us it has chosen me as one of it`s victims..

Leaving Group - Thanks to All!

Hi,

First, I want to thank everyone in this group for your support and

insights. And, two, thank goodness that this group is here! It has

given solace to so many people who have not been able to find it

elsewhere!

I've come to the point in my health odyssey, where I must move on.

Thanks to a few posts on this forum, they helped me find the missing

link to my personal health puzzle (gluten intolerance), as well as

offering a glimpse into the world of other FMS sufferers. Thank you

all.

When I decided to, " Take Charge of My Health " , 5 long years ago,

after being diagnosed with hepatitis c, little did I know the journey

that I would embark upon.......

I bought books, I searched the net endlessly, I learned to question

my doctor's (and often, go against their opinion!, or find another

doctor..) and learned. I changed my diet - mostly organic raw

veggies (no dressing), lean chicken, limited dairy but with lots of

yogurt, and started taking good, quality vitamins.

Fast forward to this year. I had been maintaining fairly well until

about 6-7 months ago. My Fibro symptoms took over and I became

almost housebound - upset stomach, extreme chemical sensitivities

(hard to go up detergent or bug spray aisles in grocery, etc.), any

loud noise would send my pulse racing, panic attacks, stomach

bloating, always agitated, etc. - all of the symptoms that everyone

on this forum know about.

So, I spent hundreds of dollars on Fibro books. Finally got a very

good doctor. Spent 8-10 hours a day on the net for months. And after

doing all of this and learning which test results most affected fibro

folks(endocrine, adrenal, hormonal, thyroid) , which nutrients and

supplements we were mostly found to be deficient in, etc., I was

fully prepared to have many of the above things wrong when I went in

for the results of my very thorough blood and urine work-up.

All of the above - NORMAL! Blood work - Mostly normal except for a

few glitches due to a genetic defect (that I also found out about),

Cortisol, Growth Hormone, Thyroid, Etc. - Normal, Normal, Normal

However, I did show that I had been exposed (or actually had) many of

the viruses that are often listed in Fibro books and sites

as " Underlying Conditions " , as well as to Mycoplasma (with very low

levels however), as well as my Hepatitis C infection.

So, these tests results kind of pulled the rug out from under me.

None of the stuff that my expensive books and months and months of

research said usually show up in the blood of fibro folks - DIDN'T!

However, the test that some docs consider to be a very good

indication of wheat gluten intolerance, was sky high. And since I

had started feeling dramatically better a few days earlier due to not

eating any wheat (that I know about - the stuffs in everything), I

had to assume that I had either celiac disease or gluten intolerance.

Of course, I've now spent about 100 bucks worth on gluten or celiac

disease books - have bookmarked about 50 sites from the net about

gluten and it's link to disease, and I have come to the conclusion

that most of my problems are being caused by over 50 years of my body

trying to digest something that it lacks an enzyme for. The most

dramatic thing though, is how I feel. I do have fibro symptoms but

not nearly as bad!!!!!!!! I feel clear-headed and not as stiff in the

morning. I walk 2-3 miles every other day with no after-flares. The

noise and smell sensation is much diminished - all of my symptoms are

much better.

And now, thanks to all of this new found knowledge (and feeling

better!) I can look ahead to the future and make plans. Before, I

thought that I had some kind of life-long disorder that no one

understood as well as having hepatitis c. And of course (I thought),

I was probably not going to live that long - or probably want to, if

to live a life with fibro was going to be it. Now, I finally

understand the root cause of all of my problems - and since I can

control it, it gives me hope that I will make a full recovery from

the fibro anyway - the hep c is another story..........

So, that's my story. I love this group but I can no longer stick

around now that I know the truth. It pains me to read some of the

posts now - I want to jump in and push my unpopular opinion in almost

every post. And believe me, telling a group of people to stop eating

wheat or to change their diet on the eve of the Holiday Season

borders on insane......

And the reluctance of many of you to even consider that a food

allergy could be causing fibro (and many other disorders) is very

disheartening to me. I'm sure that a lot of you all are sick of my

posts as well. But it upsets me to hear about how many prescriptions

that most of you are on - one person said that they were taking over

20 prescription meds a day! And to hear over and over again the same

symptoms and the same things that were being posted over two years

ago when I joined this group. NOTHING has changed. The medical

society might know a little bit more about fibro than they did but

still continue to prescribe pill after pill that do little if

anything to get to the root of the problem. It never occurs to them

that a food intolerance could be the problem instead of some other

problem. Take the " new " Fibromyalgia commercial " as an example. It

is put out by Pfizer - the makers of the " only FDA approved

medication for fibro " - Lyrica. Good old Lyrica that seems to work

fine for a few weeks until you have to up the dosage. Then, usually

the side effects are so bad that you can't take it anymore. You also

become addicted to it and must wean yourself off of it or end up in

the emergency room. That's the new FDA approved miracle drug?

That is why it is so important to read and learn on your own. Having

a support group where one can go to complain and whine is great - but

not so great when there are no solutions. And when one is offered,

like my well documented gluten intolerance information, it is scoffed

at or ignored. People don't want to give up their " comfort food " -

when it is the food that is making them sick in the first place.

Good luck to all and thank you for what support I did receive from a

few people on this forum. Thank you all and I wish everyone the best!

in New Orleans

[Guest guest]

Hello to all of you,

What I am reading here is sad, for we all suffer from the same illness.

We all have the right to feel and talk about the way we feel about our

illness. Our feelings belong to us, but, what we do not or should not do

is this.. whip some one else with our feelings. Then we trespass some

ones boundaries and that is not right.

Anger only adds to our problems and causes our illness to progress.

I read alot of anger in this group, and why, I do not understand.

Can someone tell me how it works for them, or gets better feeling.?

I listen to others and allow them to own their decisions on their health

and/or how they deal with it. If I am ask a question about it, I will answer

with out judgment or criticism. This is called " unconditional love " .

I am truly sorry that some of you are so unhappy and full of emotional

and physical pain. IF I can help anyone, I am here. I hurt too, but, I

do not want you to hurt any more than you are. So, I'll just be here

and spread the love and patient, plus understanding that we all need.

Please be more tolorant towards each other ok? Now, with that I will

sign off of here. If anyone is unset by my email then please let me

know and I will apologise to them.

God bless,

Terry

Terry

You teach people how to treat you

Self-respect is when you develope boundaries.

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

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Hey

sorry to hear you are leaving. sometimes it is just better to post

what we have learned worked for us and leave it up to the others to

decide.

i think it stinks if we are all sick cos of food, BUT i am not

ruling it out. after the first of the year I am trying GF diet

again. this time i will research more as gluten is IN more than I

realized.

I would like to continue to email with you and Margaret.

I will keep the group posted if the gf diet helps me. I am in much

more pain that before and gluten intolerance worsens with age.

>

> Hi,

>

> First, I want to thank everyone in this group for your support and

> insights. And, two, thank goodness that this group is here! It

has

> given solace to so many people who have not been able to find it

> elsewhere!

>

> I've come to the point in my health odyssey, where I must move on.

> Thanks to a few posts on this forum, they helped me find the

missing

> link to my personal health puzzle (gluten intolerance), as well as

> offering a glimpse into the world of other FMS sufferers. Thank

you

> all.

>

> When I decided to, " Take Charge of My Health " , 5 long years ago,

> after being diagnosed with hepatitis c, little did I know the

journey

> that I would embark upon.......

>

> I bought books, I searched the net endlessly, I learned to

question

> my doctor's (and often, go against their opinion!, or find another

> doctor..) and learned. I changed my diet - mostly organic raw

> veggies (no dressing), lean chicken, limited dairy but with lots

of

> yogurt, and started taking good, quality vitamins.

>

> Fast forward to this year. I had been maintaining fairly well

until

> about 6-7 months ago. My Fibro symptoms took over and I became

> almost housebound - upset stomach, extreme chemical sensitivities

> (hard to go up detergent or bug spray aisles in grocery, etc.),

any

> loud noise would send my pulse racing, panic attacks, stomach

> bloating, always agitated, etc. - all of the symptoms that

everyone

> on this forum know about.

>

> So, I spent hundreds of dollars on Fibro books. Finally got a very

> good doctor. Spent 8-10 hours a day on the net for months. And

after

> doing all of this and learning which test results most affected

fibro

> folks(endocrine, adrenal, hormonal, thyroid) , which nutrients and

> supplements we were mostly found to be deficient in, etc., I was

> fully prepared to have many of the above things wrong when I went

in

> for the results of my very thorough blood and urine work-up.

>

> All of the above - NORMAL! Blood work - Mostly normal except for

a

> few glitches due to a genetic defect (that I also found out

about),

> Cortisol, Growth Hormone, Thyroid, Etc. - Normal, Normal, Normal

>

> However, I did show that I had been exposed (or actually had) many

of

> the viruses that are often listed in Fibro books and sites

> as " Underlying Conditions " , as well as to Mycoplasma (with very

low

> levels however), as well as my Hepatitis C infection.

>

> So, these tests results kind of pulled the rug out from under me.

> None of the stuff that my expensive books and months and months of

> research said usually show up in the blood of fibro folks - DIDN'T!

>

> However, the test that some docs consider to be a very good

> indication of wheat gluten intolerance, was sky high. And since I

> had started feeling dramatically better a few days earlier due to

not

> eating any wheat (that I know about - the stuffs in everything), I

> had to assume that I had either celiac disease or gluten

intolerance.

>

> Of course, I've now spent about 100 bucks worth on gluten or

celiac

> disease books - have bookmarked about 50 sites from the net about

> gluten and it's link to disease, and I have come to the conclusion

> that most of my problems are being caused by over 50 years of my

body

> trying to digest something that it lacks an enzyme for. The most

> dramatic thing though, is how I feel. I do have fibro symptoms but

> not nearly as bad!!!!!!!! I feel clear-headed and not as stiff in

the

> morning. I walk 2-3 miles every other day with no after-flares.

The

> noise and smell sensation is much diminished - all of my symptoms

are

> much better.

>

> And now, thanks to all of this new found knowledge (and feeling

> better!) I can look ahead to the future and make plans. Before, I

> thought that I had some kind of life-long disorder that no one

> understood as well as having hepatitis c. And of course (I

thought),

> I was probably not going to live that long - or probably want to,

if

> to live a life with fibro was going to be it. Now, I finally

> understand the root cause of all of my problems - and since I can

> control it, it gives me hope that I will make a full recovery from

> the fibro anyway - the hep c is another story..........

>

> So, that's my story. I love this group but I can no longer stick

> around now that I know the truth. It pains me to read some of the

> posts now - I want to jump in and push my unpopular opinion in

almost

> every post. And believe me, telling a group of people to stop

eating

> wheat or to change their diet on the eve of the Holiday Season

> borders on insane......

>

> And the reluctance of many of you to even consider that a food

> allergy could be causing fibro (and many other disorders) is very

> disheartening to me. I'm sure that a lot of you all are sick of

my

> posts as well. But it upsets me to hear about how many

prescriptions

> that most of you are on - one person said that they were taking

over

> 20 prescription meds a day! And to hear over and over again the

same

> symptoms and the same things that were being posted over two years

> ago when I joined this group. NOTHING has changed. The medical

> society might know a little bit more about fibro than they did but

> still continue to prescribe pill after pill that do little if

> anything to get to the root of the problem. It never occurs to

them

> that a food intolerance could be the problem instead of some other

> problem. Take the " new " Fibromyalgia commercial " as an example.

It

> is put out by Pfizer - the makers of the " only FDA approved

> medication for fibro " - Lyrica. Good old Lyrica that seems to

work

> fine for a few weeks until you have to up the dosage. Then,

usually

> the side effects are so bad that you can't take it anymore. You

also

> become addicted to it and must wean yourself off of it or end up

in

> the emergency room. That's the new FDA approved miracle drug?

>

> That is why it is so important to read and learn on your own.

Having

> a support group where one can go to complain and whine is great -

but

> not so great when there are no solutions. And when one is

offered,

> like my well documented gluten intolerance information, it is

scoffed

> at or ignored. People don't want to give up their " comfort food " -

> when it is the food that is making them sick in the first place.

>

> Good luck to all and thank you for what support I did receive from

a

> few people on this forum. Thank you all and I wish everyone the

best!

>

> in New Orleans

>

>

>

[Guest guest]

Hello Everyone. I'm new to the group and have been reading some of

the posts, and this particular one caught my attention. A little

brief history on my Fibromyalgia story: I was officially diagnosed

with FM in the fall of 2002, then came the diagnosis of CFIDS after

my Epstien Barr Virus test came back as active. My doc at the time

believes my Epstien Barr Virus was activated after I had a bout of E-

Coli. I've been to several Rhuemies, and won't ever go to another

one. I finally got admitted to a Pain Management Clinic where my doc

was very compassionate and understanding about the pain associated

with FM. However, he did end up " overmedicating " me, in my opinion,

and I had him narrow my meds down to the bare necessities so I could

get through a day more comfortably. Fast forward, I had to quit my

waitressing job where I'd worked for nearly 10 years and after lost

files, and other complications, with the help of a letter to my

congressman, I won full disabilty in 2006. They backed it up to 2003

and I was awarded Medicare benifets immediately because I had been

working since I was 15 (am now going to be 49 in December). I also

rec'd extra help from Medicaid for my scripts, as even with my

insurance were costing me nearly $400 a month.

Fast forward to 2005: My son, my only child, died suddenly in his

sleep from MRSA (pronounced Mersa: Google it). He was 25, and also

had FM. After trying to deal with my son's death, my pain, my

decline in the quality of my life, my marraige fell apart and I moved

from the Gulf Coast of Alabama back to my home town of Dubuque Iowa.

I hooked up with an old high school " sweetheart " and have now begun a

new life with him and his VERY LARGE family! I come from a very small

family, all of whom have died of some sort of cancer. My aunt is my

only living relative (all on my mom's side have died of cancer). My

aunt is a cancer survivor.

When I first got here I got a appt with a Family Practice doc,

who " doesn't believe in Fibro " . He believed that I had Celiac

disease, and therefore ran the test for it. Came back neg of course.

I know what I have, and I know a lot about FM, the different stages,

how it affects our CNS, how the brain plays a big part in blocking

the receptors that are supposed to control our tolerence to pain.

I've read study after study, believed some, and blew others off. FM

is a mystery for sure, and for sure, it affects everyone differently,

I also believe it is a " progressive disease " , yes, I said " disease " .

I also believe that some people have different levels of FM,

from " mild " to " full blown " . And it affects all our lives in some way

or another. Once diagnosed with FM, our lives change, period. I do

know that exercise does help, and I also know how hard it is to

actually DO the exercise. Yoga, for me, seems to work the best. But

to keep moving is much better than to simply sit around. Our bodies

were meant to move. I also have several inoperable herniated lower

lumbar discs that have pinched the caudial nerve so badly, it can't

be repaired. I've been told by 3 docs that surgery for me would be a

40/60 or less sucess. So, I've learned to live with limited mobility.

Now, back to this post. I believe that lately FM has become a

condition that is, unfortunately, over diagnosed in many many cases.

Docs slap the title FM on people when in a lot of cases the person

has something entirely different, like, example; celiac disease. A

pity, because there are many people walking around out there

believing they have FM, when they actually have something else. And

if our docs would invest a little more time, could find that out. I

do believe that what we eat affects how we feel, whether we have FM

or not. But if we do have FM, certain supplements, and other foods,

can make a difference in how we feel, again, different for everyone.

I have found a great Physcian's Assistant in a Pain Clinic here who

is " older " and has CFIDS herself, and told me that magnesium can

help, I've heard that before, as well as Malic Acid. There are many

supplements that work well for us Fibromites, while for others they

do nothing. Google Doctor Murphee and read his articles. Also another

good website, if I may post it here is: www.healthboards.com. They

have whole boards on many different conditions from FM to Depression.

I have some " sticky " posts there that contain info from research I

obtained and posted on the Fibro board. I don't know if I can " plug "

another website here, but I figure, if there is another place for

info that may help us, why not? I'm sorry if I broke any rules.

As for removing gluten from your diet and it WORKING for YOU, that's

wonderful. Hard to do, since so many of our food contains gluten. I

myself wouldn't have the self control to go on such a diet! But,

since removing gluten from your diet has worked for " you " and not for

others, is it possible you didn't have FM to begin with? Years ago

the only test they did for FM was the trigger point test, which since

then has been ruled out as symptomatic and not a good indicator for a

diagnosis.

My only advice for us who suffer from this insane disease, is to do

as much research as possible. Don't believe everything you read,

don't even beleive what your doc tells you if you feel uncomfortable

with their information. If you don't like your doc, get another, and

another, and another if necessary, until you find one you feel is on

your side. As for medications, I do take pain meds, I also take

Lexapro which treats anxiety and depression. Works well for me. I've

been on 100mcg Fentynal Duragesic Transdermal for about 3 years. My

dosage is to change the patch every 48 hours. I have a high tolerance

to opiates, always have. My breakthrough med is the new one, Opana

IR. Next month my PA is going to take me off the Fentynal and replace

it with Opana ER, so my long acting and my breakthrough med will be

the same. I may go through w/d from being on the Duragesic but it

will be worth it for me, as I feel it is a very strong med and it is

beginning to not work for me.

I'm lucky, because when I moved up here, my RX help from Medicaid

changed and ALL my meds are now free except for my valium which is

not covered by Medicare. I also am on Title 19, so my doctor visits

will be entirely covered. Big change in my life, I became poor and

got better govt. benefits! I felt bad at first taking " hand

outs " , but I figure, I'm 49, and have been working non stop since I

was 15, so I've contributed to the system, it's time for it to take

care of me when I need it now. Do I miss work, hell yes! If, I were

to go back to work, it would have to be a graveyard shift somewhere,

but my lower back limits my mobility so much, I'd practically have to

have a job where I sat in a recliner! LOL I feel best late at night.

Don't know why, but it is what it is. Mornings are rough rough rough

on me.

Having FM sucks, it changes your life, it changes who you are in some

cases, but it isn't WHO you are, it's what you HAVE. Did you all know

that Internation Fibromyalgia Day is May 25th? We have a ribbon,

just like the Breast Cancer ribbon, only ours is purple. Check Ebay

for Fibromyalgia support products. We deserve recognition and we

need others to hear our voices raised together so that the " normals "

out there understand and are tolerant of what kind of day to day

lives we lead, by no choice of our own.

We are FibroMIGHTS!

Nice to meet you all. My name is Tracey. My friends call me TK.

Namaste to all.

>

> Hi,

>

> First, I want to thank everyone in this group for your support and

> insights. And, two, thank goodness that this group is here! It has

> given solace to so many people who have not been able to find it

> elsewhere!

>

> I've come to the point in my health odyssey, where I must move on.

> Thanks to a few posts on this forum, they helped me find the

missing

> link to my personal health puzzle (gluten intolerance), as well as

> offering a glimpse into the world of other FMS sufferers. Thank

you

> all.

>

> When I decided to, " Take Charge of My Health " , 5 long years ago,

> after being diagnosed with hepatitis c, little did I know the

journey

> that I would embark upon.......

>

> I bought books, I searched the net endlessly, I learned to question

> my doctor's (and often, go against their opinion!, or find another

> doctor..) and learned. I changed my diet - mostly organic raw

> veggies (no dressing), lean chicken, limited dairy but with lots

of

> yogurt, and started taking good, quality vitamins.

>

> Fast forward to this year. I had been maintaining fairly well until

> about 6-7 months ago. My Fibro symptoms took over and I became

> almost housebound - upset stomach, extreme chemical sensitivities

> (hard to go up detergent or bug spray aisles in grocery, etc.), any

> loud noise would send my pulse racing, panic attacks, stomach

> bloating, always agitated, etc. - all of the symptoms that everyone

> on this forum know about.

>

> So, I spent hundreds of dollars on Fibro books. Finally got a very

> good doctor. Spent 8-10 hours a day on the net for months. And

after

> doing all of this and learning which test results most affected

fibro

> folks(endocrine, adrenal, hormonal, thyroid) , which nutrients and

> supplements we were mostly found to be deficient in, etc., I was

> fully prepared to have many of the above things wrong when I went

in

> for the results of my very thorough blood and urine work-up.

>

> All of the above - NORMAL! Blood work - Mostly normal except for a

> few glitches due to a genetic defect (that I also found out about),

> Cortisol, Growth Hormone, Thyroid, Etc. - Normal, Normal, Normal

>

> However, I did show that I had been exposed (or actually had) many

of

> the viruses that are often listed in Fibro books and sites

> as " Underlying Conditions " , as well as to Mycoplasma (with very low

> levels however), as well as my Hepatitis C infection.

>

> So, these tests results kind of pulled the rug out from under me.

> None of the stuff that my expensive books and months and months of

> research said usually show up in the blood of fibro folks - DIDN'T!

>

> However, the test that some docs consider to be a very good

> indication of wheat gluten intolerance, was sky high. And since I

> had started feeling dramatically better a few days earlier due to

not

> eating any wheat (that I know about - the stuffs in everything), I

> had to assume that I had either celiac disease or gluten

intolerance.

>

> Of course, I've now spent about 100 bucks worth on gluten or celiac

> disease books - have bookmarked about 50 sites from the net about

> gluten and it's link to disease, and I have come to the conclusion

> that most of my problems are being caused by over 50 years of my

body

> trying to digest something that it lacks an enzyme for. The most

> dramatic thing though, is how I feel. I do have fibro symptoms but

> not nearly as bad!!!!!!!! I feel clear-headed and not as stiff in

the

> morning. I walk 2-3 miles every other day with no after-flares. The

> noise and smell sensation is much diminished - all of my symptoms

are

> much better.

>

> And now, thanks to all of this new found knowledge (and feeling

> better!) I can look ahead to the future and make plans. Before, I

> thought that I had some kind of life-long disorder that no one

> understood as well as having hepatitis c. And of course (I

thought),

> I was probably not going to live that long - or probably want to,

if

> to live a life with fibro was going to be it. Now, I finally

> understand the root cause of all of my problems - and since I can

> control it, it gives me hope that I will make a full recovery from

> the fibro anyway - the hep c is another story..........

>

> So, that's my story. I love this group but I can no longer stick

> around now that I know the truth. It pains me to read some of the

> posts now - I want to jump in and push my unpopular opinion in

almost

> every post. And believe me, telling a group of people to stop

eating

> wheat or to change their diet on the eve of the Holiday Season

> borders on insane......

>

> And the reluctance of many of you to even consider that a food

> allergy could be causing fibro (and many other disorders) is very

> disheartening to me. I'm sure that a lot of you all are sick of my

> posts as well. But it upsets me to hear about how many

prescriptions

> that most of you are on - one person said that they were taking

over

> 20 prescription meds a day! And to hear over and over again the

same

> symptoms and the same things that were being posted over two years

> ago when I joined this group. NOTHING has changed. The medical

> society might know a little bit more about fibro than they did but

> still continue to prescribe pill after pill that do little if

> anything to get to the root of the problem. It never occurs to

them

> that a food intolerance could be the problem instead of some other

> problem. Take the " new " Fibromyalgia commercial " as an example. It

> is put out by Pfizer - the makers of the " only FDA approved

> medication for fibro " - Lyrica. Good old Lyrica that seems to work

> fine for a few weeks until you have to up the dosage. Then, usually

> the side effects are so bad that you can't take it anymore. You

also

> become addicted to it and must wean yourself off of it or end up in

> the emergency room. That's the new FDA approved miracle drug?

>

> That is why it is so important to read and learn on your own.

Having

> a support group where one can go to complain and whine is great -

but

> not so great when there are no solutions. And when one is offered,

> like my well documented gluten intolerance information, it is

scoffed

> at or ignored. People don't want to give up their " comfort food " -

> when it is the food that is making them sick in the first place.

>

> Good luck to all and thank you for what support I did receive from

a

> few people on this forum. Thank you all and I wish everyone the

best!

>

> in New Orleans

>

>

>

[Guest guest]

A lot of us have suffered for many years and have done trial and error

to find what does work. Sometimes it takes many a lot longer to find

what does work. I found mine, and no I'm not cured, but I don't suffer

nearly as much as most here. I feel like " one of the lucky ones "

because of how much my body DOES seem to allow me to do. But

unfortunately what works for me, doesn't work for the next person. I

don't take many prescription pills, just allegra, aciphex, and birth

control. Everything else is vitamin, supplement, or mineral (probiotic)

or OTC (mucinex.). But my level of pain is much lower than most. On a

flare day I'll take a naproxen. On a sore day, just one or two OTC

aleve does the trick.

But like I said, others are different and require different remedies.

Plus different people handle pain differently. I may just have gotten

used to it or learned to just deal with it better. When hubby gets a

stiff neck (something I have every single day) he acts like he is dying

of pain, and he'll say " I know you deal with this every day " and I say

" I know but that doesn't mean I'm not sorry for you for having it for

one day! " Because he is not used to that type of pain. But when I

hurt all over, I keep going. Only until my body says " no, you gotta

rest, because THIS time you have a cold/bug. " It's just so hard to tell.

Something my sister said recently - she said " I wonder what a normal

person would do if they were able to jump into my body for just a second

and feel what I feel for just a second. " (obviously she also has

fibro.) I replied " They would scream. "

But she and I just learned to deal with it. It hurts, we suffer, but we

keep on doing and going because what other choice do we have. I have

eleven pets. She has two young toddler boys. Some people just tolerate

pain differently than others. But the next person who has the same pain

may be in tears and begging the doctor for something strong to take. We

are all different in that. Our bodies are different. For me, it's

tummy issues, I will not and can not tolerate tummy issues, but I know

many people who deal with much worse and keep going.

Anyhow just rambling, hope it's okay.

smalk50@... wrote:

>

>

> No - not at all! And I'm sorry if I gave you that impression. We are all

> victims here but I am more into trying to cure this thing, and not keep

> bemoaning the same stuff over and over again. There are answers out there

and it

> is up to each person to find their own. Food intolerance is just one part of

> the puzzle - there are dozens of other things that contribute to FMS - MY key

> trigger was the wheat - for others it may be other things - but every single

> bit of research that I have done points to some kind of food intolerance as

> being the main culprit in fibro and cfs.

>

> Good luck!

>

> Chris

>

[Guest guest]

I went through a total detoxification several years ago. I had to eliminate

almost everything from my diet and add one type of thing back at a time. Then

not eat that thing and add something else back. Then add them both back. It

took months and months. The doctor I was seeing was sure that my fibro was

caused by a food intolerance and I was willing to try anything.

I didn't have any food intolerances or allergies, except to dairy which I

already knew. It was expensive and time consuming and ended up not helping me

at all.

My fibro is not caused by a food sensitivity, intollerance or allergy. I'm

glad you've found what is " causing " your fibro and that you are getting better.

I don't however think it's right to tell people they don't know what they are

doing and are staying sick because they won't do what you tell them to do.

Marti(CT, new)

debra van ness wrote:

I am sorry you are leaving. This letter seems to indicate that we love

being ill with this thing. I HAVE done some dietary changes over the last few

years. I actually gave up wheat products during one of my trials.... for 3 or 4

months... and guess what, I was not cured. I still hurt like hell even during

that time. That was only one of the eliminations I made one at a time in my diet

to see if it made a difference. With me, I found nothing to stop the stiffness

and pain and the fog and numbness and tingling.

Debra v.

smalk50 wrote:

Hi,

First, I want to thank everyone in this group for your support and

insights. And, two, thank goodness that this group is here! It has

given solace to so many people who have not been able to find it

elsewhere!

I've come to the point in my health odyssey, where I must move on.

Thanks to a few posts on this forum, they helped me find the missing

link to my personal health puzzle (gluten intolerance), as well as

offering a glimpse into the world of other FMS sufferers. Thank you

all.

When I decided to, " Take Charge of My Health " , 5 long years ago,

after being diagnosed with hepatitis c, little did I know the journey

that I would embark upon.......

I bought books, I searched the net endlessly, I learned to question

my doctor's (and often, go against their opinion!, or find another

doctor..) and learned. I changed my diet - mostly organic raw

veggies (no dressing), lean chicken, limited dairy but with lots of

yogurt, and started taking good, quality vitamins.

Fast forward to this year. I had been maintaining fairly well until

about 6-7 months ago. My Fibro symptoms took over and I became

almost housebound - upset stomach, extreme chemical sensitivities

(hard to go up detergent or bug spray aisles in grocery, etc.), any

loud noise would send my pulse racing, panic attacks, stomach

bloating, always agitated, etc. - all of the symptoms that everyone

on this forum know about.

So, I spent hundreds of dollars on Fibro books. Finally got a very

good doctor. Spent 8-10 hours a day on the net for months. And after

doing all of this and learning which test results most affected fibro

folks(endocrine, adrenal, hormonal, thyroid) , which nutrients and

supplements we were mostly found to be deficient in, etc., I was

fully prepared to have many of the above things wrong when I went in

for the results of my very thorough blood and urine work-up.

All of the above - NORMAL! Blood work - Mostly normal except for a

few glitches due to a genetic defect (that I also found out about),

Cortisol, Growth Hormone, Thyroid, Etc. - Normal, Normal, Normal

However, I did show that I had been exposed (or actually had) many of

the viruses that are often listed in Fibro books and sites

as " Underlying Conditions " , as well as to Mycoplasma (with very low

levels however), as well as my Hepatitis C infection.

So, these tests results kind of pulled the rug out from under me.

None of the stuff that my expensive books and months and months of

research said usually show up in the blood of fibro folks - DIDN'T!

However, the test that some docs consider to be a very good

indication of wheat gluten intolerance, was sky high. And since I

had started feeling dramatically better a few days earlier due to not

eating any wheat (that I know about - the stuffs in everything), I

had to assume that I had either celiac disease or gluten intolerance.

Of course, I've now spent about 100 bucks worth on gluten or celiac

disease books - have bookmarked about 50 sites from the net about

gluten and it's link to disease, and I have come to the conclusion

that most of my problems are being caused by over 50 years of my body

trying to digest something that it lacks an enzyme for. The most

dramatic thing though, is how I feel. I do have fibro symptoms but

not nearly as bad!!!!!!!! I feel clear-headed and not as stiff in the

morning. I walk 2-3 miles every other day with no after-flares. The

noise and smell sensation is much diminished - all of my symptoms are

much better.

And now, thanks to all of this new found knowledge (and feeling

better!) I can look ahead to the future and make plans. Before, I

thought that I had some kind of life-long disorder that no one

understood as well as having hepatitis c. And of course (I thought),

I was probably not going to live that long - or probably want to, if

to live a life with fibro was going to be it. Now, I finally

understand the root cause of all of my problems - and since I can

control it, it gives me hope that I will make a full recovery from

the fibro anyway - the hep c is another story..........

So, that's my story. I love this group but I can no longer stick

around now that I know the truth. It pains me to read some of the

posts now - I want to jump in and push my unpopular opinion in almost

every post. And believe me, telling a group of people to stop eating

wheat or to change their diet on the eve of the Holiday Season

borders on insane......

And the reluctance of many of you to even consider that a food

allergy could be causing fibro (and many other disorders) is very

disheartening to me. I'm sure that a lot of you all are sick of my

posts as well. But it upsets me to hear about how many prescriptions

that most of you are on - one person said that they were taking over

20 prescription meds a day! And to hear over and over again the same

symptoms and the same things that were being posted over two years

ago when I joined this group. NOTHING has changed. The medical

society might know a little bit more about fibro than they did but

still continue to prescribe pill after pill that do little if

anything to get to the root of the problem. It never occurs to them

that a food intolerance could be the problem instead of some other

problem. Take the " new " Fibromyalgia commercial " as an example. It

is put out by Pfizer - the makers of the " only FDA approved

medication for fibro " - Lyrica. Good old Lyrica that seems to work

fine for a few weeks until you have to up the dosage. Then, usually

the side effects are so bad that you can't take it anymore. You also

become addicted to it and must wean yourself off of it or end up in

the emergency room. That's the new FDA approved miracle drug?

That is why it is so important to read and learn on your own. Having

a support group where one can go to complain and whine is great - but

not so great when there are no solutions. And when one is offered,

like my well documented gluten intolerance information, it is scoffed

at or ignored. People don't want to give up their " comfort food " -

when it is the food that is making them sick in the first place.

Good luck to all and thank you for what support I did receive from a

few people on this forum. Thank you all and I wish everyone the best!

in New Orleans

[Guest guest]

, I wish you much success on the GF diet.

Marti

wrote:

Hey

sorry to hear you are leaving. sometimes it is just better to post

what we have learned worked for us and leave it up to the others to

decide.

i think it stinks if we are all sick cos of food, BUT i am not

ruling it out. after the first of the year I am trying GF diet

again. this time i will research more as gluten is IN more than I

realized.

I would like to continue to email with you and Margaret.

I will keep the group posted if the gf diet helps me. I am in much

more pain that before and gluten intolerance worsens with age.

>

> Hi,

>

> First, I want to thank everyone in this group for your support and

> insights. And, two, thank goodness that this group is here! It

has

> given solace to so many people who have not been able to find it

> elsewhere!

>

> I've come to the point in my health odyssey, where I must move on.

> Thanks to a few posts on this forum, they helped me find the

missing

> link to my personal health puzzle (gluten intolerance), as well as

> offering a glimpse into the world of other FMS sufferers. Thank

you

> all.

>

> When I decided to, " Take Charge of My Health " , 5 long years ago,

> after being diagnosed with hepatitis c, little did I know the

journey

> that I would embark upon.......

>

> I bought books, I searched the net endlessly, I learned to

question

> my doctor's (and often, go against their opinion!, or find another

> doctor..) and learned. I changed my diet - mostly organic raw

> veggies (no dressing), lean chicken, limited dairy but with lots

of

> yogurt, and started taking good, quality vitamins.

>

> Fast forward to this year. I had been maintaining fairly well

until

> about 6-7 months ago. My Fibro symptoms took over and I became

> almost housebound - upset stomach, extreme chemical sensitivities

> (hard to go up detergent or bug spray aisles in grocery, etc.),

any

> loud noise would send my pulse racing, panic attacks, stomach

> bloating, always agitated, etc. - all of the symptoms that

everyone

> on this forum know about.

>

> So, I spent hundreds of dollars on Fibro books. Finally got a very

> good doctor. Spent 8-10 hours a day on the net for months. And

after

> doing all of this and learning which test results most affected

fibro

> folks(endocrine, adrenal, hormonal, thyroid) , which nutrients and

> supplements we were mostly found to be deficient in, etc., I was

> fully prepared to have many of the above things wrong when I went

in

> for the results of my very thorough blood and urine work-up.

>

> All of the above - NORMAL! Blood work - Mostly normal except for

a

> few glitches due to a genetic defect (that I also found out

about),

> Cortisol, Growth Hormone, Thyroid, Etc. - Normal, Normal, Normal

>

> However, I did show that I had been exposed (or actually had) many

of

> the viruses that are often listed in Fibro books and sites

> as " Underlying Conditions " , as well as to Mycoplasma (with very

low

> levels however), as well as my Hepatitis C infection.

>

> So, these tests results kind of pulled the rug out from under me.

> None of the stuff that my expensive books and months and months of

> research said usually show up in the blood of fibro folks - DIDN'T!

>

> However, the test that some docs consider to be a very good

> indication of wheat gluten intolerance, was sky high. And since I

> had started feeling dramatically better a few days earlier due to

not

> eating any wheat (that I know about - the stuffs in everything), I

> had to assume that I had either celiac disease or gluten

intolerance.

>

> Of course, I've now spent about 100 bucks worth on gluten or

celiac

> disease books - have bookmarked about 50 sites from the net about

> gluten and it's link to disease, and I have come to the conclusion

> that most of my problems are being caused by over 50 years of my

body

> trying to digest something that it lacks an enzyme for. The most

> dramatic thing though, is how I feel. I do have fibro symptoms but

> not nearly as bad!!!!!!!! I feel clear-headed and not as stiff in

the

> morning. I walk 2-3 miles every other day with no after-flares.

The

> noise and smell sensation is much diminished - all of my symptoms

are

> much better.

>

> And now, thanks to all of this new found knowledge (and feeling

> better!) I can look ahead to the future and make plans. Before, I

> thought that I had some kind of life-long disorder that no one

> understood as well as having hepatitis c. And of course (I

thought),

> I was probably not going to live that long - or probably want to,

if

> to live a life with fibro was going to be it. Now, I finally

> understand the root cause of all of my problems - and since I can

> control it, it gives me hope that I will make a full recovery from

> the fibro anyway - the hep c is another story..........

>

> So, that's my story. I love this group but I can no longer stick

> around now that I know the truth. It pains me to read some of the

> posts now - I want to jump in and push my unpopular opinion in

almost

> every post. And believe me, telling a group of people to stop

eating

> wheat or to change their diet on the eve of the Holiday Season

> borders on insane......

>

> And the reluctance of many of you to even consider that a food

> allergy could be causing fibro (and many other disorders) is very

> disheartening to me. I'm sure that a lot of you all are sick of

my

> posts as well. But it upsets me to hear about how many

prescriptions

> that most of you are on - one person said that they were taking

over

> 20 prescription meds a day! And to hear over and over again the

same

> symptoms and the same things that were being posted over two years

> ago when I joined this group. NOTHING has changed. The medical

> society might know a little bit more about fibro than they did but

> still continue to prescribe pill after pill that do little if

> anything to get to the root of the problem. It never occurs to

them

> that a food intolerance could be the problem instead of some other

> problem. Take the " new " Fibromyalgia commercial " as an example.

It

> is put out by Pfizer - the makers of the " only FDA approved

> medication for fibro " - Lyrica. Good old Lyrica that seems to

work

> fine for a few weeks until you have to up the dosage. Then,

usually

> the side effects are so bad that you can't take it anymore. You

also

> become addicted to it and must wean yourself off of it or end up

in

> the emergency room. That's the new FDA approved miracle drug?

>

> That is why it is so important to read and learn on your own.

Having

> a support group where one can go to complain and whine is great -

but

> not so great when there are no solutions. And when one is

offered,

> like my well documented gluten intolerance information, it is

scoffed

> at or ignored. People don't want to give up their " comfort food " -

> when it is the food that is making them sick in the first place.

>

> Good luck to all and thank you for what support I did receive from

a

> few people on this forum. Thank you all and I wish everyone the

best!

>

> in New Orleans

>

>

>

[Guest guest]

I think you have real nerve calling people here whiners. We come here

to vent and talk to people who understand what we are going thorugh.

You are very naive to think that our doctors are clueless and you

know better. Did you ever think that maybe you never had Fibro in the

first place? Maybe you had this gluten intolerence all along.

And just so you are aware, most sufferers of Fibro have all normal

test results. So I am not quite sure where you are getting your

information from.

And to think we need your advice stating that we need to learn on our

own is crazy. Do you really think that you are the only one who has

done research about this disease? Don't you think that maybe all of

us have done the same. Buying books and spending countless hours on

the internet. What makes you think that you are the only one that has

done so?

And for your information, not all of us are on countless amounts of

drugs. I am on 3. And that is not excesive. And who are you to say

what is?

Well I am very glad to hear you are leaving the group. We don't need

such judgemental and negative people here who are not supportive.

Glad you are feeling better with your gluten intolerence. Maybe you

should join that support group.

Jerilyn

>

> Hi,

>

> First, I want to thank everyone in this group for your support and

> insights. And, two, thank goodness that this group is here! It has

> given solace to so many people who have not been able to find it

> elsewhere!

>

> I've come to the point in my health odyssey, where I must move on.

> Thanks to a few posts on this forum, they helped me find the

missing

> link to my personal health puzzle (gluten intolerance), as well as

> offering a glimpse into the world of other FMS sufferers. Thank

you

> all.

>

> When I decided to, " Take Charge of My Health " , 5 long years ago,

> after being diagnosed with hepatitis c, little did I know the

journey

> that I would embark upon.......

>

> I bought books, I searched the net endlessly, I learned to question

> my doctor's (and often, go against their opinion!, or find another

> doctor..) and learned. I changed my diet - mostly organic raw

> veggies (no dressing), lean chicken, limited dairy but with lots

of

> yogurt, and started taking good, quality vitamins.

>

> Fast forward to this year. I had been maintaining fairly well until

> about 6-7 months ago. My Fibro symptoms took over and I became

> almost housebound - upset stomach, extreme chemical sensitivities

> (hard to go up detergent or bug spray aisles in grocery, etc.), any

> loud noise would send my pulse racing, panic attacks, stomach

> bloating, always agitated, etc. - all of the symptoms that everyone

> on this forum know about.

>

> So, I spent hundreds of dollars on Fibro books. Finally got a very

> good doctor. Spent 8-10 hours a day on the net for months. And

after

> doing all of this and learning which test results most affected

fibro

> folks(endocrine, adrenal, hormonal, thyroid) , which nutrients and

> supplements we were mostly found to be deficient in, etc., I was

> fully prepared to have many of the above things wrong when I went

in

> for the results of my very thorough blood and urine work-up.

>

> All of the above - NORMAL! Blood work - Mostly normal except for a

> few glitches due to a genetic defect (that I also found out about),

> Cortisol, Growth Hormone, Thyroid, Etc. - Normal, Normal, Normal

>

> However, I did show that I had been exposed (or actually had) many

of

> the viruses that are often listed in Fibro books and sites

> as " Underlying Conditions " , as well as to Mycoplasma (with very low

> levels however), as well as my Hepatitis C infection.

>

> So, these tests results kind of pulled the rug out from under me.

> None of the stuff that my expensive books and months and months of

> research said usually show up in the blood of fibro folks - DIDN'T!

>

> However, the test that some docs consider to be a very good

> indication of wheat gluten intolerance, was sky high. And since I

> had started feeling dramatically better a few days earlier due to

not

> eating any wheat (that I know about - the stuffs in everything), I

> had to assume that I had either celiac disease or gluten

intolerance.

>

> Of course, I've now spent about 100 bucks worth on gluten or celiac

> disease books - have bookmarked about 50 sites from the net about

> gluten and it's link to disease, and I have come to the conclusion

> that most of my problems are being caused by over 50 years of my

body

> trying to digest something that it lacks an enzyme for. The most

> dramatic thing though, is how I feel. I do have fibro symptoms but

> not nearly as bad!!!!!!!! I feel clear-headed and not as stiff in

the

> morning. I walk 2-3 miles every other day with no after-flares. The

> noise and smell sensation is much diminished - all of my symptoms

are

> much better.

>

> And now, thanks to all of this new found knowledge (and feeling

> better!) I can look ahead to the future and make plans. Before, I

> thought that I had some kind of life-long disorder that no one

> understood as well as having hepatitis c. And of course (I

thought),

> I was probably not going to live that long - or probably want to,

if

> to live a life with fibro was going to be it. Now, I finally

> understand the root cause of all of my problems - and since I can

> control it, it gives me hope that I will make a full recovery from

> the fibro anyway - the hep c is another story..........

>

> So, that's my story. I love this group but I can no longer stick

> around now that I know the truth. It pains me to read some of the

> posts now - I want to jump in and push my unpopular opinion in

almost

> every post. And believe me, telling a group of people to stop

eating

> wheat or to change their diet on the eve of the Holiday Season

> borders on insane......

>

> And the reluctance of many of you to even consider that a food

> allergy could be causing fibro (and many other disorders) is very

> disheartening to me. I'm sure that a lot of you all are sick of my

> posts as well. But it upsets me to hear about how many

prescriptions

> that most of you are on - one person said that they were taking

over

> 20 prescription meds a day! And to hear over and over again the

same

> symptoms and the same things that were being posted over two years

> ago when I joined this group. NOTHING has changed. The medical

> society might know a little bit more about fibro than they did but

> still continue to prescribe pill after pill that do little if

> anything to get to the root of the problem. It never occurs to

them

> that a food intolerance could be the problem instead of some other

> problem. Take the " new " Fibromyalgia commercial " as an example. It

> is put out by Pfizer - the makers of the " only FDA approved

> medication for fibro " - Lyrica. Good old Lyrica that seems to work

> fine for a few weeks until you have to up the dosage. Then, usually

> the side effects are so bad that you can't take it anymore. You

also

> become addicted to it and must wean yourself off of it or end up in

> the emergency room. That's the new FDA approved miracle drug?

>

> That is why it is so important to read and learn on your own.

Having

> a support group where one can go to complain and whine is great -

but

> not so great when there are no solutions. And when one is offered,

> like my well documented gluten intolerance information, it is

scoffed

> at or ignored. People don't want to give up their " comfort food " -

> when it is the food that is making them sick in the first place.

>

> Good luck to all and thank you for what support I did receive from

a

> few people on this forum. Thank you all and I wish everyone the

best!

>

> in New Orleans

>

>

>

[Guest guest]

> >

> > Hi,

> >

> > First, I want to thank everyone in this group for your support and

> > insights. And, two, thank goodness that this group is here! It has

> > given solace to so many people who have not been able to find it

> > elsewhere!

> >

> > I've come to the point in my health odyssey, where I must move on.

> > Thanks to a few posts on this forum, they helped me find the

> missing

> > link to my personal health puzzle (gluten intolerance), as well as

> > offering a glimpse into the world of other FMS sufferers. Thank

> you

> > all.

> >

> > When I decided to, " Take Charge of My Health " , 5 long years ago,

> > after being diagnosed with hepatitis c, little did I know the

> journey

> > that I would embark upon.......

> >

> > I bought books, I searched the net endlessly, I learned to question

> > my doctor's (and often, go against their opinion!, or find another

> > doctor..) and learned. I changed my diet - mostly organic raw

> > veggies (no dressing), lean chicken, limited dairy but with lots

> of

> > yogurt, and started taking good, quality vitamins.

> >

> > Fast forward to this year. I had been maintaining fairly well until

> > about 6-7 months ago. My Fibro symptoms took over and I became

> > almost housebound - upset stomach, extreme chemical sensitivities

> > (hard to go up detergent or bug spray aisles in grocery, etc.), any

> > loud noise would send my pulse racing, panic attacks, stomach

> > bloating, always agitated, etc. - all of the symptoms that everyone

> > on this forum know about.

> >

> > So, I spent hundreds of dollars on Fibro books. Finally got a very

> > good doctor. Spent 8-10 hours a day on the net for months. And

> after

> > doing all of this and learning which test results most affected

> fibro

> > folks(endocrine, adrenal, hormonal, thyroid) , which nutrients and

> > supplements we were mostly found to be deficient in, etc., I was

> > fully prepared to have many of the above things wrong when I went

> in

> > for the results of my very thorough blood and urine work-up.

> >

> > All of the above - NORMAL! Blood work - Mostly normal except for a

> > few glitches due to a genetic defect (that I also found out about),

> > Cortisol, Growth Hormone, Thyroid, Etc. - Normal, Normal, Normal

> >

> > However, I did show that I had been exposed (or actually had) many

> of

> > the viruses that are often listed in Fibro books and sites

> > as " Underlying Conditions " , as well as to Mycoplasma (with very low

> > levels however), as well as my Hepatitis C infection.

> >

> > So, these tests results kind of pulled the rug out from under me.

> > None of the stuff that my expensive books and months and months of

> > research said usually show up in the blood of fibro folks - DIDN'T!

> >

> > However, the test that some docs consider to be a very good

> > indication of wheat gluten intolerance, was sky high. And since I

> > had started feeling dramatically better a few days earlier due to

> not

> > eating any wheat (that I know about - the stuffs in everything), I

> > had to assume that I had either celiac disease or gluten

> intolerance.

> >

> > Of course, I've now spent about 100 bucks worth on gluten or celiac

> > disease books - have bookmarked about 50 sites from the net about

> > gluten and it's link to disease, and I have come to the conclusion

> > that most of my problems are being caused by over 50 years of my

> body

> > trying to digest something that it lacks an enzyme for. The most

> > dramatic thing though, is how I feel. I do have fibro symptoms but

> > not nearly as bad!!!!!!!! I feel clear-headed and not as stiff in

> the

> > morning. I walk 2-3 miles every other day with no after-flares. The

> > noise and smell sensation is much diminished - all of my symptoms

> are

> > much better.

> >

> > And now, thanks to all of this new found knowledge (and feeling

> > better!) I can look ahead to the future and make plans. Before, I

> > thought that I had some kind of life-long disorder that no one

> > understood as well as having hepatitis c. And of course (I

> thought),

> > I was probably not going to live that long - or probably want to,

> if

> > to live a life with fibro was going to be it. Now, I finally

> > understand the root cause of all of my problems - and since I can

> > control it, it gives me hope that I will make a full recovery from

> > the fibro anyway - the hep c is another story..........

> >

> > So, that's my story. I love this group but I can no longer stick

> > around now that I know the truth. It pains me to read some of the

> > posts now - I want to jump in and push my unpopular opinion in

> almost

> > every post. And believe me, telling a group of people to stop

> eating

> > wheat or to change their diet on the eve of the Holiday Season

> > borders on insane......

> >

> > And the reluctance of many of you to even consider that a food

> > allergy could be causing fibro (and many other disorders) is very

> > disheartening to me. I'm sure that a lot of you all are sick of my

> > posts as well. But it upsets me to hear about how many

> prescriptions

> > that most of you are on - one person said that they were taking

> over

> > 20 prescription meds a day! And to hear over and over again the

> same

> > symptoms and the same things that were being posted over two years

> > ago when I joined this group. NOTHING has changed. The medical

> > society might know a little bit more about fibro than they did but

> > still continue to prescribe pill after pill that do little if

> > anything to get to the root of the problem. It never occurs to

> them

> > that a food intolerance could be the problem instead of some other

> > problem. Take the " new " Fibromyalgia commercial " as an example. It

> > is put out by Pfizer - the makers of the " only FDA approved

> > medication for fibro " - Lyrica. Good old Lyrica that seems to work

> > fine for a few weeks until you have to up the dosage. Then, usually

> > the side effects are so bad that you can't take it anymore. You

> also

> > become addicted to it and must wean yourself off of it or end up in

> > the emergency room. That's the new FDA approved miracle drug?

> >

> > That is why it is so important to read and learn on your own.

> Having

> > a support group where one can go to complain and whine is great -

> but

> > not so great when there are no solutions. And when one is offered,

> > like my well documented gluten intolerance information, it is

> scoffed

> > at or ignored. People don't want to give up their " comfort food " -

> > when it is the food that is making them sick in the first place.

> >

> > Good luck to all and thank you for what support I did receive from

> a

> > few people on this forum. Thank you all and I wish everyone the

> best!

> >

> > in New Orleans

> >

> >

> >

[Guest guest]

Correction! I need to correct my wording in this post I made here. I

referred to one of the first indicator tests for FM as the " trigger "

point test, when I actually meant " tender " point. Supposedly you

are/were to have between 8-18 (or something like that) of certain tender

points throughout your body in order for the doctor to determine whether

or not you may have FM. Well, this test has been proven to be

inconsistant and unreliable as many people with FM don't have any tender

points, or have very few. Basically, we hurt where EVER anyone touches

us! Sorry for mixing the two terms up.

> >

> > Hi,

> >

> > First, I want to thank everyone in this group for your support and

> > insights. And, two, thank goodness that this group is here! It has

> > given solace to so many people who have not been able to find it

> > elsewhere!

> >

> > I've come to the point in my health odyssey, where I must move on.

> > Thanks to a few posts on this forum, they helped me find the

> missing

> > link to my personal health puzzle (gluten intolerance), as well as

> > offering a glimpse into the world of other FMS sufferers. Thank

> you

> > all.

> >

> > When I decided to, " Take Charge of My Health " , 5 long years ago,

> > after being diagnosed with hepatitis c, little did I know the

> journey

> > that I would embark upon.......

> >

> > I bought books, I searched the net endlessly, I learned to question

> > my doctor's (and often, go against their opinion!, or find another

> > doctor..) and learned. I changed my diet - mostly organic raw

> > veggies (no dressing), lean chicken, limited dairy but with lots

> of

> > yogurt, and started taking good, quality vitamins.

> >

> > Fast forward to this year. I had been maintaining fairly well until

> > about 6-7 months ago. My Fibro symptoms took over and I became

> > almost housebound - upset stomach, extreme chemical sensitivities

> > (hard to go up detergent or bug spray aisles in grocery, etc.), any

> > loud noise would send my pulse racing, panic attacks, stomach

> > bloating, always agitated, etc. - all of the symptoms that everyone

> > on this forum know about.

> >

> > So, I spent hundreds of dollars on Fibro books. Finally got a very

> > good doctor. Spent 8-10 hours a day on the net for months. And

> after

> > doing all of this and learning which test results most affected

> fibro

> > folks(endocrine, adrenal, hormonal, thyroid) , which nutrients and

> > supplements we were mostly found to be deficient in, etc., I was

> > fully prepared to have many of the above things wrong when I went

> in

> > for the results of my very thorough blood and urine work-up.

> >

> > All of the above - NORMAL! Blood work - Mostly normal except for a

> > few glitches due to a genetic defect (that I also found out about),

> > Cortisol, Growth Hormone, Thyroid, Etc. - Normal, Normal, Normal

> >

> > However, I did show that I had been exposed (or actually had) many

> of

> > the viruses that are often listed in Fibro books and sites

> > as " Underlying Conditions " , as well as to Mycoplasma (with very low

> > levels however), as well as my Hepatitis C infection.

> >

> > So, these tests results kind of pulled the rug out from under me.

> > None of the stuff that my expensive books and months and months of

> > research said usually show up in the blood of fibro folks - DIDN'T!

> >

> > However, the test that some docs consider to be a very good

> > indication of wheat gluten intolerance, was sky high. And since I

> > had started feeling dramatically better a few days earlier due to

> not

> > eating any wheat (that I know about - the stuffs in everything), I

> > had to assume that I had either celiac disease or gluten

> intolerance.

> >

> > Of course, I've now spent about 100 bucks worth on gluten or celiac

> > disease books - have bookmarked about 50 sites from the net about

> > gluten and it's link to disease, and I have come to the conclusion

> > that most of my problems are being caused by over 50 years of my

> body

> > trying to digest something that it lacks an enzyme for. The most

> > dramatic thing though, is how I feel. I do have fibro symptoms but

> > not nearly as bad!!!!!!!! I feel clear-headed and not as stiff in

> the

> > morning. I walk 2-3 miles every other day with no after-flares. The

> > noise and smell sensation is much diminished - all of my symptoms

> are

> > much better.

> >

> > And now, thanks to all of this new found knowledge (and feeling

> > better!) I can look ahead to the future and make plans. Before, I

> > thought that I had some kind of life-long disorder that no one

> > understood as well as having hepatitis c. And of course (I

> thought),

> > I was probably not going to live that long - or probably want to,

> if

> > to live a life with fibro was going to be it. Now, I finally

> > understand the root cause of all of my problems - and since I can

> > control it, it gives me hope that I will make a full recovery from

> > the fibro anyway - the hep c is another story..........

> >

> > So, that's my story. I love this group but I can no longer stick

> > around now that I know the truth. It pains me to read some of the

> > posts now - I want to jump in and push my unpopular opinion in

> almost

> > every post. And believe me, telling a group of people to stop

> eating

> > wheat or to change their diet on the eve of the Holiday Season

> > borders on insane......

> >

> > And the reluctance of many of you to even consider that a food

> > allergy could be causing fibro (and many other disorders) is very

> > disheartening to me. I'm sure that a lot of you all are sick of my

> > posts as well. But it upsets me to hear about how many

> prescriptions

> > that most of you are on - one person said that they were taking

> over

> > 20 prescription meds a day! And to hear over and over again the

> same

> > symptoms and the same things that were being posted over two years

> > ago when I joined this group. NOTHING has changed. The medical

> > society might know a little bit more about fibro than they did but

> > still continue to prescribe pill after pill that do little if

> > anything to get to the root of the problem. It never occurs to

> them

> > that a food intolerance could be the problem instead of some other

> > problem. Take the " new " Fibromyalgia commercial " as an example. It

> > is put out by Pfizer - the makers of the " only FDA approved

> > medication for fibro " - Lyrica. Good old Lyrica that seems to work

> > fine for a few weeks until you have to up the dosage. Then, usually

> > the side effects are so bad that you can't take it anymore. You

> also

> > become addicted to it and must wean yourself off of it or end up in

> > the emergency room. That's the new FDA approved miracle drug?

> >

> > That is why it is so important to read and learn on your own.

> Having

> > a support group where one can go to complain and whine is great -

> but

> > not so great when there are no solutions. And when one is offered,

> > like my well documented gluten intolerance information, it is

> scoffed

> > at or ignored. People don't want to give up their " comfort food " -

> > when it is the food that is making them sick in the first place.

> >

> > Good luck to all and thank you for what support I did receive from

> a

> > few people on this forum. Thank you all and I wish everyone the

> best!

> >

> > in New Orleans

> >

> >

> >