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Hi Traceyjayne,

I am a new member, too. I have gone through 2 years of grief over the loss

of myself and my life. I know what you must be going through. Just

recently, I came out of this grief. Everyone goes through difficult times in

their own way, so I don't know what will work for you. Don't be too hard on

yourself. Recognize that you are grieving and give some time to it. It

helped me to think of myself as being in a coccoon and emerging as a new

person in a different body. This new person is just as whole and unique as

the old one was. We are not our illnesses!!!!! I saw a movie on TV where a

local baseball hero returned from the war. All in town gathered to see him,

but when he emerged from the car, he had no legs from the knees down. A

young boy, obviously disappointed at this sight of a supposed baseball hero,

called out, " Why do you have no. . . " The hero interrupted him, saying,

" What, why do I have no legs? Because they were shot off. Boy, you best not

be minding the things people don't have. You best be minding the things they

do have. " With a wink, he threw him a baseball. It was well said-----you

best be minding the things you do have. Even with our limitations, (I prefer

to say limitations, which everyone has, rather than saying I am disabled ) we

have a lot.

With lots of hugs to you,

Jeanne

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Hi KK,

Thanks for your e-mail! I can't even imagine all you have seen as an ICU

nurse. I can relate to the very sad news about your dad. I lost my dad when

I was 18, he was 53, to lung cancer.

I didn't always have this attitude. There were 2 dark years there when I

could not see beyond my pain. Then I started to paint. Actually, I had done

a little painting for a long time, but at the rate of about 1painting a year.

Now, I became a more serious painter. I started going to a painting class,

but I no longer did what the teacher did. I did my own thing. Instead of

just splashing paint on paper or canvas, I planned out what I wanted to paint

and why. Each painting was intended to teach me something, maybe an

experiment in painting flowers in every shade of orange I could create. Or

maybe I chose something symbolic, like pencil drawings of sad women. One

painting I worked on for 3 months. Although other people interrupted me

( " why do you want to spend so much time on 1 painting? or why don't you paint

that flower pink?), I did not sway my from my inner spirit. A these times, I

know I am painting with God. So, the lesson I learned is that all that God

took away in the old body, He replaced with another gift more valuable than

the first. I just had to look for it. But my attitude didn't change right

away. I was still grieving for my old self. My somewhat good paintings (at

least they were pleasing to me) were poor by comparison to travel, money,

business acquaintances, and " important " work that enabled my mind to

demonstrate its superior qualities of recall, analysis, and genius. I hope

you are laughing by now. My reduced state, which struggled with spelling,

loneliness, pain and forced humility because I was no longer anybody, was a

sorry lot. I can't say when or how it turned around. Just this month I

realized I am no longer grieving. My paintings look GOOD. That nose-to-

the-grindstone worked. Even as slowly as I painted, over a long period of

time, something was accomplished. I became happy with my achievement, and a

new sense of self emerged. I can honestly say I get more joy out of one

painting than all the money I ever made. This has given me new things to

think about. ACM is still part of my day, but there is now more.

Sorry this is so long. I guess I got carried away. Thanks for listening,

and for writing. Hope your day is pain-less and the sun shines on you,

Jeanne

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Hi KK,

Thanks for your e-mail! I can't even imagine all you have seen as an ICU

nurse. I can relate to the very sad news about your dad. I lost my dad when

I was 18, he was 53, to lung cancer.

I didn't always have this attitude. There were 2 dark years there when I

could not see beyond my pain. Then I started to paint. Actually, I had done

a little painting for a long time, but at the rate of about 1painting a year.

Now, I became a more serious painter. I started going to a painting class,

but I no longer did what the teacher did. I did my own thing. Instead of

just splashing paint on paper or canvas, I planned out what I wanted to paint

and why. Each painting was intended to teach me something, maybe an

experiment in painting flowers in every shade of orange I could create. Or

maybe I chose something symbolic, like pencil drawings of sad women. One

painting I worked on for 3 months. Although other people interrupted me

( " why do you want to spend so much time on 1 painting? or why don't you paint

that flower pink?), I did not sway my from my inner spirit. A these times, I

know I am painting with God. So, the lesson I learned is that all that God

took away in the old body, He replaced with another gift more valuable than

the first. I just had to look for it. But my attitude didn't change right

away. I was still grieving for my old self. My somewhat good paintings (at

least they were pleasing to me) were poor by comparison to travel, money,

business acquaintances, and " important " work that enabled my mind to

demonstrate its superior qualities of recall, analysis, and genius. I hope

you are laughing by now. My reduced state, which struggled with spelling,

loneliness, pain and forced humility because I was no longer anybody, was a

sorry lot. I can't say when or how it turned around. Just this month I

realized I am no longer grieving. My paintings look GOOD. That nose-to-

the-grindstone worked. Even as slowly as I painted, over a long period of

time, something was accomplished. I became happy with my achievement, and a

new sense of self emerged. I can honestly say I get more joy out of one

painting than all the money I ever made. This has given me new things to

think about. ACM is still part of my day, but there is now more.

Sorry this is so long. I guess I got carried away. Thanks for listening,

and for writing. Hope your day is pain-less and the sun shines on you,

Jeanne

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  • 2 months later...
Guest guest

Hello,

If you go to Chicago there are several specialists there. Just off the top

of my head are Dr Frim and Dr Heffez. Im sure someone has their phone

numbers or email addys.

New member

> Hello. My son, age 10, was diagnosed this week with Arnold-Chiari Type 1

with a 1 cm syrinx. We are still pulling together information. We live in

central Illinois, so our closest specialty centers are St. Louis or Chicago.

I would appreciate hearing from anyone from those areas or who have been

referred to those areas. Thanks.

>

>

>

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  • 1 year later...

Hi, I would like to introduce myself to the group. I am a 46 year old Mom of three teenage son's. We all contacted CFIDS Oct. 1999. We were all very ill for about a year. Two of my children are doing a lot better. I and one of my son's are still pretty sick with Fibro/Cfids.

I am looking forward to making friends in this group and getting to know you all.

In God's love,

To be nobody ~ but yourself~in a world that is doing its best, night and day, to make you everybody else ~means to fight the hardest battle which any human being can fight. ~ e. e. cummings 1894-1962

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SHAWN... I KNOW IT GETS CONFUSING CAUSE THERE ARE SOOO ANY LISTS OUT

THERE, HON !!! BUT YOU'VE JOINED AND QUIT THIS ONE QUITE A FEW TIMES !!!

HOPE YA STAY FOR A WHILE ! 8^)

Hi, I would like to introduce myself to the group. I am a 46 year old Mom of three teenage son's. We all contacted CFIDS Oct. 1999. We were all very ill for about a year. Two of my children are doing a lot better. I and one of my son's are still pretty sick with Fibro/Cfids.

I am looking forward to making friends in this group and getting to know you all.

In God's love,

To be nobody ~ but yourself~in a world that is doing its best, night and day, to make you everybody else ~means to fight the hardest battle which any human being can fight. ~ e. e. cummings 1894-1962

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Sharon, thank you so much! I will be glad when I feel comfortable with posting. I guess I will just jump right in! :~)

Have a great day,

WELCOME BACK SHAWN!!! GOOD TO HEAR FROM YOU. GLAD YOU OK THO.

HUGS

SHARON

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WELCOME BACK SHAWN!!! GOOD TO HEAR FROM YOU. GLAD YOU OK THO.

HUGS

SHARON

Re: New Member

SHAWN... I KNOW IT GETS CONFUSING CAUSE THERE ARE SOOO ANY LISTS OUT

THERE, HON !!! BUT YOU'VE JOINED AND QUIT THIS ONE QUITE A FEW TIMES !!!

HOPE YA STAY FOR A WHILE ! 8^)

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  • 1 month later...
Guest guest

Dear Leah --

I can't give you as long a reply as I'd like now (I'm at work!) but I'd like

to say welcome to the group and sorry you have to be here. I think you'll

find a lot of information, sometimes too much even, it can get overwhelming!

But pick and choose what's relevant for you, and if there's a topic that

really seems to apply, definitely use the archives and look up past posts

that might have talked about it.

I wanted just to tell you that I saw that same doctor you saw in Boston, Dr.

, and I ultimately left her care. She was OK but not that creative or

flexible. The best, most thorough, most creative vulvar specialists I have

met in my travels are Dr. in Phoenix, AZ, and Kellogg-Spadt in

Philadelphia, PA. Sounds like Dr. might be more in your range, unless

you do a lot of travelling to the East Coast. I can get you his phone number

if you want, and/or you might find it already in the archives.

No one doctor, not even the best one, is going to make you beat this on their

own, because even the best ones don't completely understand it. However, a

good doctor in combination with your own efforts and attempts to figure out

what works for you (alternative therapies, diet changes, etc.) CAN make a

real difference. I am not cured but I am a LOT better than when I first

started on this list 2 years ago. You just need to get really aggressive

and not wait for what my friend once called " a Doctor Knight in shining

armour "

Some people get completely better, it happens all the time, just remember

that those people are not usually the ones that stay on an email listserv!

There is a woman in my NYC support group who is all better and is kind enough

to keep coming to meetings, just to remind us that it's quite possible.

All the best,

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Hi Leah,

Welcome to our list.

Have you seen a physical thereapist for pelvic floor dysfunction? You may

find some relife there. Also, you did not mention what type of estrogen

therapy you used. Many women on this list including myself have had a lot

of success with the vaginal estring and estrace cream applyed topicly just

around the vestibular area.

If you have not seen a vulvar specialist, you may want to consider doing

that. Vulvodynia is still unfortunatly not very well understood and some

general practitioners and OB-Gyns do not even know what it is. A vulvar

specialist would have alot more experience in this.

Bunny /| |\

. .

( ! )

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

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Hi Leah:

I agree with ; you need to see someone who specializes in vulvar

disorders. There are so many doctors out there who don't have a clue! I live

in Cheyenne, WY. Being told that Colorado doctors were better, I went to

several doctors in Colorado along with several doctors in Wyoming. They all

said I had a yeast infection. After about six years of pain and confusion, I

finally found my doctor in Cheyenne (I think it was a miracle). She diagnosed

me with vulvar vestibulitis. If you can't find anybody there let me know, and

I'll give you her information.

Jana

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Hi,

I don't know what could have caused it, but since it was so near the

birth, it could be something to do with that. What did the pt give

up after 2 tries? It takes months to gets your muscles in good

shape. you just have to find a good doc, which is hard to do. And

if a doc tells you it's in you head, s'he is not a good doctor! I

hope you are not going to a psyc b/c of that. At least you are

getting help early, I waited 3 yrs to get help and by then, the

irrition was permanent. Don't do anything that hurts. That will

make it worse physically and psychologically. I know it's hard, but

we all just have to find the right treatment.

Ruth

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Hi Leah,

I'm Tom and I am sorry you had to end up here but the collective wisdom

and experience of these women will be a big boost to you in your search

for a cause

and a cure. Oh yea...by the way, I'm a Physical Therapist who

works a great deal with women's pelvic disorders have a few questions for

you.

During this walk, did you stumble / was it on uneven ground?

Do you have any back or buttock / hip pain.

Let me know when you can and I will be out of town for a week starting

March 30th -April 6th.

TKOPT

www.tomocklerpt.com

terryleah wrote:

Dear

friends,My name is Leah

and I have vulvodynia, I have been told. I have been suffering for

8 months now. It all began 6 weeks after I had my son. The

birth was 4 hours, no tearing, no episiotomies. I felt great!

At 6 weeks post partum I went for a mellow hike with my son in a front

pack and had some spotting, which is not that abnormal. The

next day, I had vaginal area irritation. I thought I had prolapsed

something in there. I was sooo worried I had damaged myself in some

way with the walk I took. I felt terrific after the birth for the

first 6 weeks, and had begun taking short walks around 3 1/2 weeks post

partum. I have always been very fit, and was during my pregnancy

(yoga 5 x a week, walking 12 miles a week, light weight lifting etc.)

I thought I was ok doing the walk/hike at 6 weeks. Everyone has told

me that the walk could not have started this horrible thing, but it is

the only connection I can make. So of course I have struggled with

guilt and anxiety about what I did to myself. As

far as symptoms, I have constant irritation in the area around the

opening of my vagina. It seems red on both sides, but I don't think

it has always been that way. Sometimes there is burning, sometimes

just and irritation feeling. When I do a kegal, I have an increased

irritation sensation. It was very bad over the holidays, but has

mellowed out a bit. I cannot wear tight pants. Bummer!

It feels worse when I sit for long periods and when I tried to run it seemed

worse, as it did when I tried to go snow shoeing. It had been

so hard, as previously I was so physically active. I live in Boulder,

Colorado. Also, it seems there are no Docs who specialize in this out here. For

treatments, I began by being told I had a yeast infection. I am quite

sure I did not! Then I was told maybe bacteria was causing the problem.

Then I was told low estrogen was, as I am breastfeeding. I tried

all these treatments and nothing changed the way I felt down there.

Two cultures revealed nothing as far as yeast or bacteria. Penetration

does not hurt, although a pt found some tight muscles inside. She

tried internal massage twice, but said the muscles were not relaxing and

gave up on me. I tired chiropractic a few times... nothing.

I saw Dr. in Boston, my family lives in NH, and she said to take

nortryptaline. Did not seem to help. I have had an MRI, revealing

2 small herniations and a CT revealing sacroiliitis. I am scheduled

to see a physiatrist in April. I am terribly confused about what

exactly is causing this. I have read about and communicated

with people who have pudendal neuropathy. I am not sure if this is

what I have or not, as it can cause genital pain. Basically, I do

not know what to do next. I am depressed. I feel like a defective

woman. I am tired from being in pain, although it is not as

bad as many women who have this. I

apologize for all the ranting. It is nice to know there are other

people out there as confused about this as I am . Thank you

for listening to me. Sincerely, Leah

*****END OF MESSAGE*****

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

To post message: VulvarDisorders

To Subscribe: VulvarDisorders-subscribe

Unsubscribe: VulvarDisorders-unsubscribe

List owner: VulvarDisorders-owner

*****

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Guest guest

Hi Leah,

Welcome, sorry you have to go through this. Please know we all

understand how depressing and awful it can feel, but with the right

care and treatment, you can feel better. I'm really tired right now,

so I won't say much b/c I am going to bed. But tomorrow night or

Saturday I'll post to you again. Everybody is pretty willing to share

what they have tried. I think from what I understand about the drop

in hormones after childbirth and nursing (and that many of us have

found Estrace cream to work for us--it is an estrogen cream) that

whoever told you that was the cause may be onto something. Might be

worth looking into more......but I don't know what all you've tried so

far. Keep posting. I hope you find your answers soon. Feel well and

enjoy your beautiful baby.

Meg

BTW--my husband has chosen the name Leah if we ever have a

daughter--he and I think it is so pretty!

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  • 2 weeks later...
Guest guest

Hi Stacey:

Wow - you could be my twin. I, too, am prone to UTIs and am supposed

to take Macrobid (same as macrodantin) after sex to prevent UTIs (100

mg). My symptoms cleared up, although occasionally I would get a UTI

that was resistant to the antibiotic. Being on the antibiotics has

given me a low-grade chronic yeast infection. I have been treated

w/so many different kinds of yeast medicines and still had the vulvar

pain even after the yeast was seemingly gone.

I was just diagnosed two weeks ago and have started taking 20 mg

Elavil nightly, plus use nightly Estrace cream and, for pain, a

prescription mix of 5% aspirin with vaseline (which helps A LOT). I'm

also doing an anti-yeast diet and taking herbs from a homeopath. The

anti-yeast diet is pretty strict - no wheat, no sugar, no dairy are

included in the no-yeast plan - but the itching is definitely much

better.

I don't know anything about surgery - my ob/gyn says it's not very

successful and she's hopeful that this will cure me since my VV is

relatively new (about 2 yrs, but worse in the last 6 mos). Many of

the wonderful women here who have been offering me support and advice

may have their own surgical stories to tell - some good, some not so.

I would just get all the info you can. We are definitely our own best

advocates, so just keep asking questions and learning from other

people's experiences in order to find things to try that work for

you. Don't let any doctor push you into something you're not

comfortable with! Surgery is pretty drastic, so you might want to

look into other options first. But only you can make that decision.

Everyone here has made me feel so supported. I hope that I can help

do the same for you.

Love,

> Hello, I am 25 years old and just diagnosed with

> vulvar vestibulitis. I have been misdiagnosed for

> about two years now. I was told that I was prone to

> getting UTI's from intercourse and put on macrodantine

> to take this little pill after sex. When the symptom

> still persisted I went to another doctor and was told

> it was a chronic yeast infection and put on diflucan

> and another topical cream and antibiotic. The

> symptoms of burning during and after sex, when

> inserting a tampon and whiping after going to the

> bathroom still perstisted, I went to another doctor.

> Now I have been to two different doctors that

> diagnosed me with vulvar vestibulitis, but each had a

> different remedy to cure my problem. I have this sense

> of relief nowing that the pain is not phsychological

> and there is a name for the condition I have, but what

> steps do I take to cure the problem. Can anyone give

> me some input on the effects they have felt from the

> surgical procedure, vulvar vestibulectomy? I am

> considering this and need to know before I go further.

> Thank you all for letting me ramble and hopefully

> giving me some answers.

>

> Stacey

>

> __________________________________________________

>

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Guest guest

Stacey,

Welcome to our group.

Surgery is a very last resort for this problem. It is not always

sucessful, and in rare cases it can make it worse.

There are many other non-surgical treatments out there, from Estrace

(estrogen cream), to acupuncture to the low oxalate diet to

identifying food allergies. Food allergies was the main cause of my

pain, and I have also been diagnosed with hormone allergies. Like you

I was around 25 when this all started, I had chronic yeast infections

and bladder/urethral gland pain. If at all possible I would recommend

finding a doctor who specializes in VV. I go to one in northern

california that is great.

in SF

> Hello, I am 25 years old and just diagnosed with

> vulvar vestibulitis. I have been misdiagnosed for

> about two years now. I was told that I was prone to

> getting UTI's from intercourse and put on macrodantine

> to take this little pill after sex. When the symptom

> still persisted I went to another doctor and was told

> it was a chronic yeast infection and put on diflucan

> and another topical cream and antibiotic. The

> symptoms of burning during and after sex, when

> inserting a tampon and whiping after going to the

> bathroom still perstisted, I went to another doctor.

> Now I have been to two different doctors that

> diagnosed me with vulvar vestibulitis, but each had a

> different remedy to cure my problem. I have this sense

> of relief nowing that the pain is not phsychological

> and there is a name for the condition I have, but what

> steps do I take to cure the problem. Can anyone give

> me some input on the effects they have felt from the

> surgical procedure, vulvar vestibulectomy? I am

> considering this and need to know before I go further.

> Thank you all for letting me ramble and hopefully

> giving me some answers.

>

> Stacey

>

> __________________________________________________

>

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Guest guest

Welcome to the group (even though I wish you didn't have to be here)!

I am 25 and have vulvar vestibulitis as well. I have had pain with the

insertion of anything my whole life and have tried nortriptyline, PT,

estrace, and biofeedback thus far, none of which have been successful. I am

taking Neurontin and using lidocaine currently, but it is too early to tell

if anything is working. I haven't had intercourse with my boyfriend in over

a year which has been difficult and have been also thinking about surgery

although I haven't tried everything else yet. My doctor (Dr. ) does

the surgery and says that she has had much success with it, but of course I

am still nervous about it.

How long have you had this problem? Were you ever able to use tampons or

have sex without pain? Also, are you taking any mendicines, using creams, or

seeing a PT? Although I haven't had success with any of these therapies yet

I know some people have.

Sorry I can not give you more info, but just wanted to let you know that you

are among many women who know what you are going through! Write me whenever

you need to!

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Stacey,

I am somewhat behind in my email so if you have already recived an answer to

your questions, I apologise.

I had a vulvar vestibulectomy done by an excellent doctor in Milwaukee WI.

I did however try numerous other things first and would highly recomend that

you do also. There is currently no cure for vestibulitis as they do not

know what exactly causes some of us to be prone to this when others are not.

But it can be managed by repairing the damage done already and by managing

the problems that caused the vestibulary glands to become inflamed in the

first place (the problem is that they do not know what the underlying

problem is that causes us to be so sensitive to things like hormonal

changes, yeast infections etc... in the first place).

If you have any questions about my surgery, feel free to contact me off list

and I would be happy to answer any of your questions.

Bunny /| |\

. .

( ! )

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

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  • 3 years later...
Guest guest

Since I just took a pain pill, I'm fading fast, but I'm pulling for you to get better... for all of us. I love hearing "successful" stories. My feeling is to glean what you need and ignors the rest. If you need any support or just want to vent, I'm here. I find this is a nice comfortable place to vent... everyone has been there at one time or another.

Tigger

new member

Hello to all

I am a newbee.

I am 44 years old and have been diagnosed with fibro for many years.

Ialso have allergy's, bone disease, arthritis, and too many more to even think about. My doctor tells me that a 90 year old woman's body is better than mine

Patsy is my name and I live in Arkansas. Married for 17 wonderful years. One son and 3 grandchildren. Worked as a nurse until 5 years ago. It took me a while to get my disability.

Then after having it for 3 years they tried to take it back but did not work.

I am not able to do anything when the fribo "attacks" come on .

Usually I have to stay in the bed. as any movement sends me in to unbelieveable pain.

I also suffer from leg and hip pain and have for all my life.

Well enough of that if you want to know anything just ask.

This group is really great as I have been reading for about a week the wonderful friends that you are. I hope you will let me in too.

I also have two cats- Ellie Mae, Callie Lou, a bird named twitty and several fish. Most of my days are long and empty. I have not been able to do any of my crafts or much the past few months.

I do not know what else to write so I will close for now.

1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

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Hi Patsy;

Welcome to the group, I am glad that you've found us and hope that you will feel the support you need in your life from us. :) Please feel free to jump in on any discussion or start one of your own, express any fears/concerns, share experiences as I am sure you've noticed that we each do just that. :)

I am karis, 36y/o single mother of a 15y/o daughter, I'm six years diagnosed with FMS-CFS/ME and about a dozen linking illnesses. I know what it is to be filled with days, which feel long and empty - that is why I spend soo much time on the computer - in groups, writing and working on web pages. What type of crafts do you do?

I have two cats as well - Kidd and Play - I've had them since they were 6wks old, they have just turned 9yrs now - I wanted to name then Nike and Fila but my daughter said no. lol

Karis

new member

Hello to all

I am a newbee.

I am 44 years old and have been diagnosed with fibro for many years.

Ialso have allergy's, bone disease, arthritis, and too many more to even think about. My doctor tells me that a 90 year old woman's body is better than mine

Patsy is my name and I live in Arkansas. Married for 17 wonderful years. One son and 3 grandchildren. Worked as a nurse until 5 years ago. It took me a while to get my disability.

Then after having it for 3 years they tried to take it back but did not work.

I am not able to do anything when the fribo "attacks" come on .

Usually I have to stay in the bed. as any movement sends me in to unbelieveable pain.

I also suffer from leg and hip pain and have for all my life.

Well enough of that if you want to know anything just ask.

This group is really great as I have been reading for about a week the wonderful friends that you are. I hope you will let me in too.

I also have two cats- Ellie Mae, Callie Lou, a bird named twitty and several fish. Most of my days are long and empty. I have not been able to do any of my crafts or much the past few months.

I do not know what else to write so I will close for now.

1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

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Guest guest

Aloha Patsy!!!!

Welcome to the young-but-feeling-older-than-dirt group! hahaha!!!!!!! Yep, yep, yep.... there are soooooooo many women in my community in their late years who are in such great shape and i sit here just looking at them green with envy (i'm 37) --- i'm surprised that a doctor would tell you such a thing as he did, though.... seems rather cruel, if you ask me.....

anyway, glad you're here!

aloha!

jaana (and the Chicken - aka: Chickie)

new member

Hello to all

I am a newbee.

I am 44 years old and have been diagnosed with fibro for many years.

Ialso have allergy's, bone disease, arthritis, and too many more to even think about. My doctor tells me that a 90 year old woman's body is better than mine

Patsy is my name and I live in Arkansas. Married for 17 wonderful years. One son and 3 grandchildren. Worked as a nurse until 5 years ago. It took me a while to get my disability.

Then after having it for 3 years they tried to take it back but did not work.

I am not able to do anything when the fribo "attacks" come on .

Usually I have to stay in the bed. as any movement sends me in to unbelieveable pain.

I also suffer from leg and hip pain and have for all my life.

Well enough of that if you want to know anything just ask.

This group is really great as I have been reading for about a week the wonderful friends that you are. I hope you will let me in too.

I also have two cats- Ellie Mae, Callie Lou, a bird named twitty and several fish. Most of my days are long and empty. I have not been able to do any of my crafts or much the past few months.

I do not know what else to write so I will close for now.

1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

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Welcome! I know what you mean about empty days. I stay in bed 90% of

the time. Just sitting out here to be on my PC is murder on my back

and legs. But it's worth it to chat with all of you.

I am lucky if I leave my apartment once a month, and that is usually

to go to a doctors appt. It is lonely and depressing. What really

helps is getting online and chatting with women who are in the same

situation as I am. Also, my main reason for waking up each day is to

help others with this hellish disease, in any way I can.

Stick around and you'll get to love it here as much as we all do!

Email me anytime you would like someone to talk to. I'm ALWAYS home.

ladiekerrie613@...

~*Kerrie*~

> Hello to all

> I am a newbee.

> I am 44 years old and have been diagnosed with fibro for many years.

> Ialso have allergy's, bone disease, arthritis, and too many more to even

> think about. My doctor tells me that a 90 year old woman's body is

better

> than mine

> Patsy is my name and I live in Arkansas. Married for 17 wonderful

years. One

> son and 3 grandchildren. Worked as a nurse until 5 years ago. It

took me a

> while to get my disability.

> Then after having it for 3 years they tried to take it back but did

not work

>

> I am not able to do anything when the fribo " attacks " come on .

> Usually I have to stay in the bed. as any movement sends me in to

> unbelieveable pain.

> I also suffer from leg and hip pain and have for all my life.

> Well enough of that if you want to know anything just ask.

> This group is really great as I have been reading for about a week the

> wonderful friends that you are. I hope you will let me in too.

> I also have two cats- Ellie Mae, Callie Lou, a bird named twitty and

several

> fish. Most of my days are long and empty. I have not been able to

do any

> of my crafts or much the past few months.

> I do not know what else to write so I will close for now.

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Share on other sites

Guest guest

Welcome! I know what you mean about empty days. I stay in bed 90% of

the time. Just sitting out here to be on my PC is murder on my back

and legs. But it's worth it to chat with all of you.

I am lucky if I leave my apartment once a month, and that is usually

to go to a doctors appt. It is lonely and depressing. What really

helps is getting online and chatting with women who are in the same

situation as I am. Also, my main reason for waking up each day is to

help others with this hellish disease, in any way I can.

Stick around and you'll get to love it here as much as we all do!

Email me anytime you would like someone to talk to. I'm ALWAYS home.

ladiekerrie613@...

~*Kerrie*~

> Hello to all

> I am a newbee.

> I am 44 years old and have been diagnosed with fibro for many years.

> Ialso have allergy's, bone disease, arthritis, and too many more to even

> think about. My doctor tells me that a 90 year old woman's body is

better

> than mine

> Patsy is my name and I live in Arkansas. Married for 17 wonderful

years. One

> son and 3 grandchildren. Worked as a nurse until 5 years ago. It

took me a

> while to get my disability.

> Then after having it for 3 years they tried to take it back but did

not work

>

> I am not able to do anything when the fribo " attacks " come on .

> Usually I have to stay in the bed. as any movement sends me in to

> unbelieveable pain.

> I also suffer from leg and hip pain and have for all my life.

> Well enough of that if you want to know anything just ask.

> This group is really great as I have been reading for about a week the

> wonderful friends that you are. I hope you will let me in too.

> I also have two cats- Ellie Mae, Callie Lou, a bird named twitty and

several

> fish. Most of my days are long and empty. I have not been able to

do any

> of my crafts or much the past few months.

> I do not know what else to write so I will close for now.

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Welcome Patsy. Sorry that you suffer from bone disease and AR on top of FMS!! That must be very difficult.patsy wrote:

Hello to all

I am a newbee.

I am 44 years old and have been diagnosed with fibro for many years.

Ialso have allergy's, bone disease, arthritis, and too many more to even think about. My doctor tells me that a 90 year old woman's body is better than mine

Patsy is my name and I live in Arkansas. Married for 17 wonderful years. One son and 3 grandchildren. Worked as a nurse until 5 years ago. It took me a while to get my disability.

Then after having it for 3 years they tried to take it back but did not work.

I am not able to do anything when the fribo "attacks" come on .

Usually I have to stay in the bed. as any movement sends me in to unbelieveable pain.

I also suffer from leg and hip pain and have for all my life.

Well enough of that if you want to know anything just ask.

This group is really great as I have been reading for about a week the wonderful friends that you are. I hope you will let me in too.

I also have two cats- Ellie Mae, Callie Lou, a bird named twitty and several fish. Most of my days are long and empty. I have not been able to do any of my crafts or much the past few months.

I do not know what else to write so I will close for now.

1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.Amy Swinderman Live aloha!__________________________________________________

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" Annette Pratt " wrote:

My name is Annette and I have suffered from fibro since 1999.

The main reason I want to join this group is for support. I haven't

been able to make friends and it would be nice to be around people

who understand this disease and what it does to you.

I hope this helps. If you have any questions, I would be happy to

answer them. "

Welcome Annette

This forum is not only filled with knowledge, it is

staffed and frequented by caring and sharing angels.You have

journeyed to the right place.

My friends young daughter was recently diagnosed with

lupus & fibromyalgia. I suspect You are in a position you know more

than many Dr s you encounter, how do you follow recent

improvements/developments in the treating of your medical symptoms?

In your opinion when Pfizer s pain reliever Lyrica (

pregabalin) hits the pharmacies (early 2005?from press release) Will

persons having fibromyalgia be able to have it as a RX or will the Dr

s balk untill it is cleared as helping that specific syndrome?

Again as they say in Navy : welcome aboard gimpi1 aka

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