Re: no one takes this seriously!

[Guest guest]

When I was first diagnosed my mother who was 72 at the time would say in a whisper " She has a head disease" ,. Of course it was because I told her "they say I have a neurological disease". Being from the old guard neurological equals nuts. Hahahahahaha. But as time has passed she (now 82) is understanding that its much more than that.

I think it's a problem that people really don't know what it is. They don't realize it affects people differently. I know when the doctor told me what was wrong with me I actually looked at him and said " Your making this up" because I had never heard of it.

The important thing is that you not compare yourself to your sister or others. I have friends with FM in wheelchairs and some who seem to function well with little problem. If you compare yourself with others you stress your self out and that's a killer.

Mornings are terrible for me. So I get up, take care of my granddaughter , get her off to school and go back to sleep. Granted I sleep because I'm exhausted from a terrible night so I more or less crash. At about 1 PM. I get up and do chores and I'm still ok for when my grand daughter comes home.

What helped my family was to introduce them to people who have FM and see how bad it can and does get.

God Bless you and yours

God Bless America

Love ya,

Gail

-- no one takes this seriously!

HI,Lately, I'm beginning to feel like people don't really take fibro very seriously,(those around me).This is depressing because i have

[Guest guest]

Dear , I'm not sure how this works because I am new here, but you are not alone! My sister recently told me that "all I do is sit around in bed and complain." That's not even the truth and she knows it. It was a direct slam against my illness and my inability to "conquer" it. She's not the only one. Part of the problem is that we look good. We don't look like cancer patients in the throws of chemotherapy, so people naturally assume we are making it all up. The pain and suffering of fibromyalgia is beyond the imagination of "normal" people. One of my biggest laughs is the many FMS sites that consider "tolerable pain," pain that is under control. Obviously, these people have never experienced the mind-wrenching spasms, twitches, burning pain in just about every area of our body. Even when it is "tolerable," it is awful. , I've had FMS and CFS all of my life. I am 52 years old

and was diagnosed in 1995, and so am one of the pioneers of this disease. Back then, I did medicate myself with Ibuprofen. Also with lots of wine. I look back and realize that the wine was the worst thing I could have done for myself, but was all I had to relieve the constant, mind-numbing pain I endured day in, day out. Today, great strides have been made in the medical community, but unfortunately, most people are still ignorant about FMS and the crazy-making pain and fatigue we endure. I have been going to a Psychologist for Cognitive Behavioral training for about a year and it has made a difference. He hasn't adjusted my pain meds, and my pain hasn't gotten any better, but I am now able to look at myself as a real person and at the disease as a real entity in my life that I need to deal with. I follow a special diet and try to exercise when I am up to it, but nothing really works for me. Any type of stress will set it off even worse than before (if

that's possible). , you need to stop listening to other people and listen to your own body. Each one of us with FMS has a different path, different ways to cope and different meds we take. Find a good doctor and perhaps a good therapist to come up with a therapy that will help you find some peace. Someone else here said that your sister might not have FMS if she works two jobs. I always rate FMS from 1 to 10. 1 - 4 is mild - you probably have a little pain and off and on symptoms listed in the wonderful article by Devin J. Starlanyl recommended here on the site. She might be in that category. Then there is 5 - 7 or moderate symptoms. You might be able to work part-time or you might not in this category as your symptoms are far worse and the pain more invasive. I, unfortunately, have been at the 7 - 10 category for almost two years after a fall and a bad concussion and I can tell you that I have every symptom listed in that article to a degree

that makes me weep most days, even with the meds I am able to take. But we are survivors. I know that we are warriors! I doubt that most of the people giving us their kind advice would be able to withstand the agony that we do! Remembering that helps me to keep things in perspective when well-meaning people tell me to take some new vitamin or supplement that is guaranteed to have results for FMS. Best wishes to you . I hope things get better for you as you learn to handle this disease in healthy ways. Hugs to you (carefully , Kathy Heyner wrote: HI,Lately, I'm beginning to feel like people don't really take fibro very seriously,(those around me).This is depressing because i have just not been well at

all lately and it seems like others just don't get it how rotten I feel.Don't get it don't care or don't believe me or my doctor.Always want me to do stuff and go places when I just don't feel up to it.And everyone has avoided the subject since I was diagnosed, exept my mom, she's great.This is very much on my mind and I am worried about how much worse it might get.My sister has it and she works two jobs, keeps her place spotless, got more energy in one day than I do in a whole month!HOW? Mom gave me some vitamins to try and see if it helps my energy some.But I am so down because I feel like no one believes me how lousy I feel.And then I think "It will never end?"Does anyone have any advice on what I can do to deal with this a little better?

__________________________________________________

[Guest guest]

Well said Kathy!!!!!!!!! Welcome!!!!!!!

God Bless you and yours

God Bless America

Love ya,

Gail

-- Re: no one takes this seriously!

Dear ,

I'm not sure how this works because I am new here, but you are not alone! My sister recently told me that "all I do is sit around in bed and complain." That's not even the truth and she knows it. It was a direct slam against my illness and my inability to "conquer" it. She's not the only one. Part of the problem is that we look good. We don't look like cancer patients in the throws of chemotherapy, so people naturally assume we are making it all up.

The pain and suffering of fibromyalgia is beyond the imagination of "normal" people. One of my biggest laughs is the many FMS sites that consider "tolerable pain," pain that is under control. Obviously, these people have never experienced the mind-wrenching spasms, twitches, burning pain in just about every area of our body. Even when it is "tolerable," it is awful.

, I've had FMS and CFS all of my life. I am 52 years old and was diagnosed in 1995, and so am one of the pioneers of this disease. Back then, I did medicate myself with Ibuprofen. Also with lots of wine. I look back and realize that the wine was the worst thing I could have done for myself, but was all I had to relieve the constant, mind-numbing pain I endured day in, day out. Today, great strides have been made in the medical community, but unfortunately, most people are still ignorant about FMS and the crazy-making pain and fatigue we endure.

I have been going to a Psychologist for Cognitive Behavioral training for about a year and it has made a difference. He hasn't adjusted my pain meds, and my pain hasn't gotten any better, but I am now able to look at myself as a real person and at the disease as a real entity in my life that I need to deal with. I follow a special diet and try to exercise when I am up to it, but nothing really works for me. Any type of stress will set it off even worse than before (if that's possible).

, you need to stop listening to other people and listen to your own body. Each one of us with FMS has a different path, different ways to cope and different meds we take. Find a good doctor and perhaps a good therapist to come up with a therapy that will help you find some peace. Someone else here said that your sister might not have FMS if she works two jobs. I always rate FMS from 1 to 10. 1 - 4 is mild - you probably have a little pain and off and on symptoms listed in the wonderful article by Devin J. Starlanyl recommended here on the site. She might be in that category. Then there is 5 - 7 or moderate symptoms. You might be able to work part-time or you might not in this category as your symptoms are far worse and the pain more invasive. I, unfortunately, have been at the 7 - 10 category for almost two years after a fall and a bad concussion and I can tell you that I have every symptom listed in that article to a degree that makes me weep most days, even with the meds I am able to take. But we are survivors. I know that we are warriors! I doubt that most of the people giving us their kind advice would be able to withstand the agony that we do! Remembering that helps me to keep things in perspective when well-meaning people tell me to take some new vitamin or supplement that is guaranteed to have results for FMS.

Best wishes to you . I hope things get better for you as you learn to handle this disease in healthy ways.

Hugs to you (carefully ,

Kathy Heyner wrote:

HI,Lately, I'm beginning to feel like people don't really take fibro very seriously,(those around me).This is depressing because i have just not been well at all lately and it seems like others just don't get it how rotten I feel.Don't get it don't care or don't believe me or my doctor.Always want me to do stuff and go places when I just don't feel up to it.And everyone has avoided the subject since I was diagnosed, exept my mom, she's great.This is very much on my mind and I am worried about how much worse it might get.My sister has it and she works two jobs, keeps her place spotless, got more energy in one day than I do in a whole month!HOW? Mom gave me some vitamins to try and see if it helps my energy some.But I am so down because I feel like no one believes me how lousy I feel.And then I think "It will never end?"Does anyone have any advice on what I can do to deal with this a little better?

__________________________________________________

[Guest guest]

,

Are you sure your sister really has it?? I hurt so bad I "can't" do it all. Keep your head up, we are all in this together.

Sandy

My sister has it and she works two jobs, keeps her place spotless, got more energy in one day than I do in a whole month!HOW? Mom gave me some vitamins to try and see if it helps my energy some.

[Guest guest]

Your sister doesn't seem to have the symptoms of Fibromyalgia!! Boundless energy doesn't sound like Fibro:)

Penny> >> > My sister has it and> > she works two jobs, keeps her place spotless, got more energy in> one> > day than I do in a whole month!HOW? Mom gave me some vitamins to> try> > and see if it helps my energy> some. > >> >> >> >> >> > 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

[Guest guest]

I havent been on for a couple of days and boy did I miss some

things. I got the same thing from a few people. At first I didnt

tell anyone except my immediate family one because I was embarrassed

and two because I was like " what the heck is this. They can't even

give you a real diagnosis just rule things out. " Then I told me

daughter-in-law to be and she made a comment that it was " in my

head " and I blew up. I am not an ass it is not in my head! I finally

after a couple of years started telling other friends and found one

or two who had family members with it so they were understanding.

It took me three years to tell my sister and now she is telling

everyone and I hate it! I just dont think it is anyone's business

unless I decide to tell them. Last week she said " Oh I was talking

to this woman who has Fibro - what you have - and she isnt bent over

or crippled or anything. " What the heck is that - neither am I. I

was so damn mad I wanted to spit nails at her. First she must have

told this stranger becuase the woman probably didnt bring it up and

then to make a comment like that.

Sorry to get on a soap box but I think we all go through this and it

is nice to have a group that knows it is not in your head!

is (who will now get off the soapbox)

>

> When I was first diagnosed my mother who was 72 at the time would

say in a

> whisper " She has a head disease " ,. Of course it was because I

told her

> they say I have a neurological disease " . Being from the old guard

> neurological equals nuts. Hahahahahaha. But as time has passed she

(now 82)

> is understanding that its much more than that.

> I think it's a problem that people really don't know what it is.

They don't

> realize it affects people differently. I know when the doctor told

me what

> was wrong with me I actually looked at him and said " Your making

this up "

> because I had never heard of it.

> The important thing is that you not compare yourself to your

sister or

> others. I have friends with FM in wheelchairs and some who seem to

function

> well with little problem. If you compare yourself with others you

stress

> your self out and that's a killer.

> Mornings are terrible for me. So I get up, take care of my

granddaughter ,

> get her off to school and go back to sleep. Granted I sleep

because I'm

> exhausted from a terrible night so I more or less crash. At about

1 PM. I

> get up and do chores and I'm still ok for when my grand daughter

comes home.

>

> What helped my family was to introduce them to people who have FM

and see

> how bad it can and does get.

>

> God Bless you and yours

> God Bless America

> Love ya,

> Gail

> -- no one takes this seriously!

>

> HI,

> Lately, I'm beginning to feel like people don't really take fibro

> very seriously,(those around me).This is depressing because i have

>

[Guest guest]

Next time a relative responds like that tell them its hereditary and

they are going to get it too! Now I know it isnt proven but it would

be worth it to see the look on their faces ! lol Oh I can be as mean

as the next guy when you pull my string.( watch out relatives! )

deb

[Guest guest]

Deb!! your mean but its a great idea!!! hahahahaha

Hey it can be spread by sneezing , then sneeze on them .

God Bless you and yours

God Bless America

Love ya,

Gail

-- Re: no one takes this seriously!

Next time a relative responds like that tell them its hereditary and they are going to get it too! Now I know it isnt proven but it would be worth it to see the look on their faces ! lol Oh I can be as mean as the next guy when you pull my string.( watch out relatives! )deb

[Guest guest]

lol Ithink i'll pull that on my kids..

I read about it being in families.. it makes me wonder how they get anythng done..

Re: no one takes this seriously!

Next time a relative responds like that tell them its hereditary and they are going to get it too! Now I know it isnt proven but it would be worth it to see the look on their faces ! lol Oh I can be as mean as the next guy when you pull my string.( watch out relatives! )deb

[Guest guest]

lol Ithink i'll pull that on my kids..

I read about it being in families.. it makes me wonder how they get anythng done..

Re: no one takes this seriously!

Next time a relative responds like that tell them its hereditary and they are going to get it too! Now I know it isnt proven but it would be worth it to see the look on their faces ! lol Oh I can be as mean as the next guy when you pull my string.( watch out relatives! )deb

[Guest guest]

Actually that is when I came out of the closet about it. Two of my

cousins who are 2 and 4 years younger than I am came down with similar

symptoms and their families were going nuts so I figured I should tell

them. It turns out the one has lupus though but some of the syptoms she

is experiencing are very similiar to FMS.

is

>

> Next time a relative responds like that tell them its hereditary and

> they are going to get it too! Now I know it isnt proven but it would

> be worth it to see the look on their faces ! lol Oh I can be as mean

> as the next guy when you pull my string.( watch out relatives! )

> deb

>

[Guest guest]

is;

I told every one I don't care. This is who I am deal with it.

Ohhhh! my youngest son has a girl friend who came over one night and said. You are in pain because all you do is sit at the computer. I said "excuse me?" I told her she doesn't know me how dare she make an assumption like that. I wanted to throttle her!! Then she says "You need to exercise and lose weight. That did it.

Tonight my son walks in and says they broke up. I told him I couldn't be upset about that unless he told me it was because he was gay! Ha ha ha ha ha

I hate when people think they have all the answers. I tell them. I don't even know half the questions!! hahaha

My family asks how I got it I tell them I got it from Dad.

God Bless you and yours

God Bless America

Love ya,

Gail

-- no one takes this seriously!> > HI,> Lately, I'm beginning to feel like people don't really take fibro > very seriously,(those around me).This is depressing because i have>

[Guest guest]

http://www.msakc.org/Articles/MSFibroLupus.htm

It gives a check list of the three diseases. Yes Ms, lupus and FM are so much a like that its hard to tell the difference with out the spinal fluid being tested. But I learned something . I have had a nasal ulster for two years and that is a characteristic of lupus. Ten years ago I was tested for lupus but it was negative.

My sister has rheumatoid arthritis.She was tested this past summer and it was positive.

God Bless you and yours

God Bless America

Love ya,

Gail

-- Re: no one takes this seriously!

Actually that is when I came out of the closet about it. Two of my cousins who are 2 and 4 years younger than I am came down with similar symptoms and their families were going nuts so I figured I should tell them. It turns out the one has lupus though but some of the syptoms she is experiencing are very similiar to FMS.is>> Next time a relative responds like that tell them its hereditary and > they are going to get it too! Now I know it isnt proven but it would > be worth it to see the look on their faces ! lol Oh I can be as mean > as the next guy when you pull my string.( watch out relatives! )> deb>

[Guest guest]

I've probably already said this before (fibro-fog), but I've been at the severe level of FMS for 2 years having been mild to moderate all of my life. It's bad enough that you suffer enormous pain, unspeakable flu 24/7, and worst of all, look good while it's all happening so that nobody believes you when you can't function. Recently, my sister told me that "all you do is sit around in bed all day and complain." Nice! My brother just thinks I'm psychotic. My parents think "it's all in your head." My husband tolerates it, but gets almost as tired of dealing with this disease as I do. Amongst the many things I do to try to control this evil malady, is go to a wonderful Cognitive Behavioral Therapist. He has taught me that it is NOT in my head, that it is OK to feel sick and to cut out of my life the people who malign me as much as possible. He has also worked with the whole family, which has been really helpful. As for my church - well, I think they

think I don't pray enough or haven't given it over to God or don't have enough faith because of all the troubles I suffer. People are still people, even when they are Christian. But, I think sometimes that the judgment from my brothers and sisters at church hurt more than my own family's. Don't worry about a soapbox, is. I'm famous for getting on them. You get that way when you've suffered beyond belief forever and nobody believes you. You spend what little energy you have researching new treatments, trying to find better medical care and dealing with unbelieving families (and churches . And, to top it all off, you get more unsolicited advice from just about everybody on the face of the earth, when you probably could open up your own practice and treat FMS you already know so much about it. There is no doubt that I know more about FMS than my doctor does. But that's as good as it gets when you live in the sticks! So, I'll now get off my soapbox. PS: my daughter's flight just took off - it's 10:05 pm. She's been waiting at Logan Airport since 3:30 this afternoon. At least she's finally on her way! Now I'll try to rest until she calls when she arrives in Seattle. They can grow up, but they never grow out, do they? Best to you all, Kathyquiltingbee2 wrote: I havent been on for a couple of days and boy did I miss some things. I got the same thing from a few people. At first I didnt tell anyone except my immediate family one because I was embarrassed and two because I was like "what the heck is this. They can't even give you a real diagnosis just rule things out." Then I told me

daughter-in-law to be and she made a comment that it was "in my head" and I blew up. I am not an ass it is not in my head! I finally after a couple of years started telling other friends and found one or two who had family members with it so they were understanding. It took me three years to tell my sister and now she is telling everyone and I hate it! I just dont think it is anyone's business unless I decide to tell them. Last week she said "Oh I was talking to this woman who has Fibro - what you have - and she isnt bent over or crippled or anything." What the heck is that - neither am I. I was so damn mad I wanted to spit nails at her. First she must have told this stranger becuase the woman probably didnt bring it up and then to make a comment like that. Sorry to get on a soap box but I think we all go through this and it is nice to have a group that knows it is not in your head!is (who will now get off

the soapbox)>> When I was first diagnosed my mother who was 72 at the time would say in a> whisper " She has a head disease" ,. Of course it was because I told her > they say I have a neurological disease". Being from the old guard > neurological equals nuts. Hahahahahaha. But as time has passed she (now 82)> is understanding that its much more than that.> I think it's a problem that people really don't know what it is. They don't> realize it affects people differently. I know when the doctor told me what> was wrong with me I actually looked at him and said " Your making this up"> because I had never heard of it. > The important thing is that you not compare yourself to your sister or> others. I have friends with FM in wheelchairs and some who seem to

function> well with little problem. If you compare yourself with others you stress> your self out and that's a killer. > Mornings are terrible for me. So I get up, take care of my granddaughter ,> get her off to school and go back to sleep. Granted I sleep because I'm> exhausted from a terrible night so I more or less crash. At about 1 PM. I> get up and do chores and I'm still ok for when my grand daughter comes home.> > What helped my family was to introduce them to people who have FM and see> how bad it can and does get. > > God Bless you and yours> God Bless America> Love ya,> Gail> -- no one takes this seriously!> > HI,> Lately, I'm

beginning to feel like people don't really take fibro > very seriously,(those around me).This is depressing because i have> __________________________________________________

[Guest guest]

I've probably already said this before (fibro-fog), but I've been at the severe level of FMS for 2 years having been mild to moderate all of my life. It's bad enough that you suffer enormous pain, unspeakable flu 24/7, and worst of all, look good while it's all happening so that nobody believes you when you can't function. Recently, my sister told me that "all you do is sit around in bed all day and complain." Nice! My brother just thinks I'm psychotic. My parents think "it's all in your head." My husband tolerates it, but gets almost as tired of dealing with this disease as I do. Amongst the many things I do to try to control this evil malady, is go to a wonderful Cognitive Behavioral Therapist. He has taught me that it is NOT in my head, that it is OK to feel sick and to cut out of my life the people who malign me as much as possible. He has also worked with the whole family, which has been really helpful. As for my church - well, I think they

think I don't pray enough or haven't given it over to God or don't have enough faith because of all the troubles I suffer. People are still people, even when they are Christian. But, I think sometimes that the judgment from my brothers and sisters at church hurt more than my own family's. Don't worry about a soapbox, is. I'm famous for getting on them. You get that way when you've suffered beyond belief forever and nobody believes you. You spend what little energy you have researching new treatments, trying to find better medical care and dealing with unbelieving families (and churches . And, to top it all off, you get more unsolicited advice from just about everybody on the face of the earth, when you probably could open up your own practice and treat FMS you already know so much about it. There is no doubt that I know more about FMS than my doctor does. But that's as good as it gets when you live in the sticks! So, I'll now get off my soapbox. PS: my daughter's flight just took off - it's 10:05 pm. She's been waiting at Logan Airport since 3:30 this afternoon. At least she's finally on her way! Now I'll try to rest until she calls when she arrives in Seattle. They can grow up, but they never grow out, do they? Best to you all, Kathyquiltingbee2 wrote: I havent been on for a couple of days and boy did I miss some things. I got the same thing from a few people. At first I didnt tell anyone except my immediate family one because I was embarrassed and two because I was like "what the heck is this. They can't even give you a real diagnosis just rule things out." Then I told me

daughter-in-law to be and she made a comment that it was "in my head" and I blew up. I am not an ass it is not in my head! I finally after a couple of years started telling other friends and found one or two who had family members with it so they were understanding. It took me three years to tell my sister and now she is telling everyone and I hate it! I just dont think it is anyone's business unless I decide to tell them. Last week she said "Oh I was talking to this woman who has Fibro - what you have - and she isnt bent over or crippled or anything." What the heck is that - neither am I. I was so damn mad I wanted to spit nails at her. First she must have told this stranger becuase the woman probably didnt bring it up and then to make a comment like that. Sorry to get on a soap box but I think we all go through this and it is nice to have a group that knows it is not in your head!is (who will now get off

the soapbox)>> When I was first diagnosed my mother who was 72 at the time would say in a> whisper " She has a head disease" ,. Of course it was because I told her > they say I have a neurological disease". Being from the old guard > neurological equals nuts. Hahahahahaha. But as time has passed she (now 82)> is understanding that its much more than that.> I think it's a problem that people really don't know what it is. They don't> realize it affects people differently. I know when the doctor told me what> was wrong with me I actually looked at him and said " Your making this up"> because I had never heard of it. > The important thing is that you not compare yourself to your sister or> others. I have friends with FM in wheelchairs and some who seem to

function> well with little problem. If you compare yourself with others you stress> your self out and that's a killer. > Mornings are terrible for me. So I get up, take care of my granddaughter ,> get her off to school and go back to sleep. Granted I sleep because I'm> exhausted from a terrible night so I more or less crash. At about 1 PM. I> get up and do chores and I'm still ok for when my grand daughter comes home.> > What helped my family was to introduce them to people who have FM and see> how bad it can and does get. > > God Bless you and yours> God Bless America> Love ya,> Gail> -- no one takes this seriously!> > HI,> Lately, I'm

beginning to feel like people don't really take fibro > very seriously,(those around me).This is depressing because i have> __________________________________________________

[Guest guest]

I have a sister who has to have everything I have too lol! She has also had a lot of other things too, like "cancer" which mysteriously disappeared without treatment. She is ten years older than me and in fact seems to be remarkably healthy.

Penny

On 08/01/2006 00:47:42, quiltingbee2 (quiltingbee2@...) wrote:> YOu can read my soapbox post but when I said I had it my sister> thought she should be tested too - has to have everything I have -> like I had my gallbladder out and she had a scan.> > It doesnt sound like your sister has it either. If I tried to do> that, I would be in bed a week and I dont have it nearly as bad as> some of the others in this wonderful group.> > is

[Guest guest]

I have a sister who has to have everything I have too lol! She has also had a lot of other things too, like "cancer" which mysteriously disappeared without treatment. She is ten years older than me and in fact seems to be remarkably healthy.

Penny

On 08/01/2006 00:47:42, quiltingbee2 (quiltingbee2@...) wrote:> YOu can read my soapbox post but when I said I had it my sister> thought she should be tested too - has to have everything I have -> like I had my gallbladder out and she had a scan.> > It doesnt sound like your sister has it either. If I tried to do> that, I would be in bed a week and I dont have it nearly as bad as> some of the others in this wonderful group.> > is

[Guest guest]

people like tht drive me NUTS.... I have enough stuff wrong with me I don't have to fake it... and when other people have the oh poor me syndrome it just makes me want to smack them really hard...

Re: no one takes this seriously!

I have a sister who has to have everything I have too lol! She has also had a lot of other things too, like "cancer" which mysteriously disappeared without treatment. She is ten years older than me and in fact seems to be remarkably healthy.

Penny

On 08/01/2006 00:47:42, quiltingbee2 (quiltingbee2@...) wrote:> YOu can read my soapbox post but when I said I had it my sister> thought she should be tested too - has to have everything I have -> like I had my gallbladder out and she had a scan.> > It doesnt sound like your sister has it either. If I tried to do> that, I would be in bed a week and I dont have it nearly as bad as> some of the others in this wonderful group.> > is

[Guest guest]

people like tht drive me NUTS.... I have enough stuff wrong with me I don't have to fake it... and when other people have the oh poor me syndrome it just makes me want to smack them really hard...

Re: no one takes this seriously!

I have a sister who has to have everything I have too lol! She has also had a lot of other things too, like "cancer" which mysteriously disappeared without treatment. She is ten years older than me and in fact seems to be remarkably healthy.

Penny

On 08/01/2006 00:47:42, quiltingbee2 (quiltingbee2@...) wrote:> YOu can read my soapbox post but when I said I had it my sister> thought she should be tested too - has to have everything I have -> like I had my gallbladder out and she had a scan.> > It doesnt sound like your sister has it either. If I tried to do> that, I would be in bed a week and I dont have it nearly as bad as> some of the others in this wonderful group.> > is

[Guest guest]

Thanks Gail,

I love the " I got it from Dad " comment. Actually I think it came

from my mom's side. She had a lot of problems way back when - muscle

pain, etc. and they said it was all in her head. She passed away in

1970 so when I got this a few years ago it scared the heck out of

me. I thought for sure I was headed her way since I was about the

same age as she was when she passed.

is

> >

> > When I was first diagnosed my mother who was 72 at the time

would

> say in a

> > whisper " She has a head disease " ,. Of course it was because I

> told her

> > they say I have a neurological disease " . Being from the old

guard

> > neurological equals nuts. Hahahahahaha. But as time has passed

she

> (now 82)

> > is understanding that its much more than that.

> > I think it's a problem that people really don't know what it

is.

> They don't

> > realize it affects people differently. I know when the doctor

told

> me what

> > was wrong with me I actually looked at him and said " Your

making

> this up "

> > because I had never heard of it.

> > The important thing is that you not compare yourself to your

> sister or

> > others. I have friends with FM in wheelchairs and some who seem

to

> function

> > well with little problem. If you compare yourself with others

you

> stress

> > your self out and that's a killer.

> > Mornings are terrible for me. So I get up, take care of my

> granddaughter ,

> > get her off to school and go back to sleep. Granted I sleep

> because I'm

> > exhausted from a terrible night so I more or less crash. At

about

> 1 PM. I

> > get up and do chores and I'm still ok for when my grand daughter

> comes home.

> >

> > What helped my family was to introduce them to people who have

FM

> and see

> > how bad it can and does get.

> >

> > God Bless you and yours

> > God Bless America

> > Love ya,

> > Gail

> > -- no one takes this seriously!

> >

> > HI,

> > Lately, I'm beginning to feel like people don't really take

fibro

> > very seriously,(those around me).This is depressing because i

have

> >

>

>

>

>

>

>

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

the list

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

with your

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

meds as well

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

>

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

pls don't

> be afraid to ask for help. It is the first step to trying to make

that

> situation better.

>

> 3. To unsubscribe the e-mail is:

> Fibromyalgia_Support_Group-unsubscribe

>

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

bad at

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

take

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

the things

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

itself) even

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

multiple

> illnesses try to keep a sense of humor.

>

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

bad day pls

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

>

> Have a nice day everyone.

>

>

>

>

>

[Guest guest]

Yikes! I have what I think is a cold sore in my nose right now. I

have one on my upper lip , so I assumed they are the same thing. Did

you ever get cold sores in your nose?

deb

[Guest guest]

LOL Im not really mean, I just figure if a person is being mean to me

turn about is fair play. People have no right to assume anything about

another persons health.

deb

[Guest guest]

Gail - wonderful article - the best I've read comparing the three similar diseases. However, according to what I've read - I seem to have more of the MS symptoms than FMS. I've had 3 scans to rule it out, but never a spinal tap. I keep wondering if I should. The symptoms seem to get worse instead of better. Of course, it's probably just me thinking that if I feel so horrible, it must be something worse than some nebulous pain disease! Thanks for the link! KathyGail Kubik wrote: http://www.msakc.org/Articles/MSFibroLupus.htm It gives a check list of the three diseases. Yes Ms, lupus and FM are so much a like that its hard to tell the difference with out the spinal fluid being tested. But I learned something . I have had a nasal ulster for two years and that is a characteristic of lupus. Ten years ago I was tested for lupus but it was negative. My sister has rheumatoid arthritis.She was tested this past summer and it was positive. God Bless you and yours God Bless America Love ya, Gail -- Re: no one takes this seriously! Actually that is when I came out of the closet about it. Two of my cousins who are 2 and 4 years younger than I am came down with similar symptoms and their families were going nuts so I figured I should tell them. It turns out the one has lupus though but some of the syptoms she is experiencing are very similiar to

FMS.is>> Next time a relative responds like that tell them its hereditary and > they are going to get it too! Now I know it isnt proven but it would > be worth it to see the look on their faces ! lol Oh I can be as mean > as the next guy when you pull my string.( watch out relatives! )> deb> __________________________________________________

[Guest guest]

My doctor treats all types of autoimmune and immunilogical syndromes and diseases. A lot of them are very similar. Lupus, FM, CFS, AIDS all share a number of the same symptoms.

Actually that is when I came out of the closet about it. Two of my

cousins who are 2 and 4 years younger than I am came down with similar

symptoms and their families were going nuts so I figured I should tell

them. It turns out the one has lupus though but some of the syptoms she

is experiencing are very similiar to FMS.

is

>

> Next time a relative responds like that tell them its hereditary and

> they are going to get it too! Now I know it isnt proven but it would

> be worth it to see the look on their faces ! lol Oh I can be as mean

> as the next guy when you pull my string.( watch out relatives! )

> deb

>

1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.

3. To unsubscribe the e-mail is: Fibromyalgia_Support_Group-unsubscribe

4. Also, it is not uncommon for more than one member to be feeling bad at the same time when it comes to flares and b/c of that potentially take something another member says the wrong way. And that includes the things that one member may find funny (even if it's laughing at fibro itself) even though we who deal with illness whether one such as fibro or multiple illnesses try to keep a sense of humor.

5. Pls let's be gentle with each other, and if you are having a bad day pls let us know so that we can do our best to offer our support.

Have a nice day everyone.

[Guest guest]

I know what you are talking about because I had Yeast

infection in mouth or what they call Candida for 4

months. I would get an RX for diflucan and it would

go away for 3 days or so and come right back. Then I

got on the Glyconutrients and no more yeast what

soever.

But, those cold sores and herpes related symtoms can

all be so dang horrible and it makes you mad when you

can not seem to get rid of it. I was the same way so

I feel for you.

Take care.

__________________________________________

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