HELP...NEED ANSWERS PLEASE...

June 14, 2012

I have a question that is primarily for those of you with Chiari and/or EDS (but

ANY insight would be happily welcomed). I hate to post this to the public but I

NEED to find answeres! I have had this EXTREMELY PAINFUL AND IRRITATING problem

that when it first started would be almost like every 4 months on the nose but

then has become more and more and MORE regular to almost be weekly and at times

doesn't go away for over a week and will often just hit in the middle or end of

a day out of nowhere. OK, the " problem " is a pain in my chest, very cenetred

and over my sternum area that is not cardiac. I have been told in the past that

it was " pluersy " " costrochondritis " (sp) and most recently given a script for

rib and sternum exrays (not done yet). I was perscribed " Indocin " for any

inlammation that it may be but that literally kills my stomach. The pain is

very strange and it hurts TREMENDOUSLY to breathe and I have had to spend as

much as 4 days flat in bed from it. When it starts I almost hate to even move

knowing it will just continue to get worse for several days before going away.

This has become a regular part of my life that I can no longer deal with! When

I say " bad " pain, I mean BAD. I am on constant pain management for my Chiari

issues and effects of surgery and stroke and etc..... So one would think that my

pain would be pretty " managed " but it is NOT! When it is " here " I use muscle

relaxers, heat packs and pin meds but it only help me to feel like I can

actually " Breathe " and when I remove the heat and try to move I feel like I am

being punched in the chest. I am praying that someone has some insight of

some kind for me? The more I read up on EDS I think maybe it is that but I

truely have NO idea and welcome any input! Please let me know if you have any

info for me.... Thank you, Mindy

June 15, 2012

Mindy,

You have a lot going on here. Sorry to hear you are in so much pain. Until you

can get an EDS workup, you have a lot to deal with.

If possible, go ahead and get the tests they suggested. Even if they come up

normal, it tells you something, dig into EDS, keep looking inside and outside

the Chiari community. If it is not normal, and they find something, you can

start getting it treated.

Sometimes those of us who have experienced a lot and know, really know, intense

pain, we put off getting things checked for any number of reasons -- we learned

to tolerate pain, we don't want another problem, etc. But, truth is, at some

point, we have to pull ourselves back up and keep looking.

Let us know what you find out.

Hanna

To:

From: mindyjc@...

Date: Thu, 14 Jun 2012 06:49:46 +0000

Subject: HELP...NEED ANSWERS PLEASE...

I have a question that is primarily for those of you with Chiari and/or

EDS (but ANY insight would be happily welcomed). I hate to post this to the

public but I NEED to find answeres! I have had this EXTREMELY PAINFUL AND

IRRITATING problem that when it first started would be almost like every 4

months on the nose but then has become more and more and MORE regular to almost

be weekly and at times doesn't go away for over a week and will often just hit

in the middle or end of a day out of nowhere. OK, the " problem " is a pain in my

chest, very cenetred and over my sternum area that is not cardiac. I have been

told in the past that it was " pluersy " " costrochondritis " (sp) and most recently

given a script for rib and sternum exrays (not done yet). I was perscribed

" Indocin " for any inlammation that it may be but that literally kills my

stomach. The pain is very strange and it hurts TREMENDOUSLY to breathe and I

have had to spend as much as 4 days flat in bed from it. When it starts I

almost hate to even move knowing it will just continue to get worse for several

days before going away. This has become a regular part of my life that I can no

longer deal with! When I say " bad " pain, I mean BAD. I am on constant pain

management for my Chiari issues and effects of surgery and stroke and etc.....

So one would think that my pain would be pretty " managed " but it is NOT! When

it is " here " I use muscle relaxers, heat packs and pin meds but it only help me

to feel like I can actually " Breathe " and when I remove the heat and try to move

I feel like I am being punched in the chest. I am praying that someone has

some insight of some kind for me? The more I read up on EDS I think maybe it is

that but I truely have NO idea and welcome any input! Please let me know if you

have any info for me.... Thank you, Mindy

June 15, 2012

What is an EDS work up?

De: Hanna T

Responder a: < >

Fecha: jueves 14 de junio de 2012 17:42

Para: <chiariconnectioninternational >

Asunto: RE: HELP...NEED ANSWERS PLEASE...

Mindy,

You have a lot going on here. Sorry to hear you are in so much pain. Until

you can get an EDS workup, you have a lot to deal with.

If possible, go ahead and get the tests they suggested. Even if they come

up normal, it tells you something, dig into EDS, keep looking inside and

outside the Chiari community. If it is not normal, and they find

something, you can start getting it treated.

Sometimes those of us who have experienced a lot and know, really know,

intense pain, we put off getting things checked for any number of reasons --

we learned to tolerate pain, we don't want another problem, etc. But, truth

is, at some point, we have to pull ourselves back up and keep looking.

Let us know what you find out.

Hanna

To:

<mailto:%40yahoogroups.com>

From: mindyjc@... <mailto:mindyjc%40msn.com>

Date: Thu, 14 Jun 2012 06:49:46 +0000

Subject: HELP...NEED ANSWERS PLEASE...

I have a question that is primarily for those of you with Chiari and/or EDS

(but ANY insight would be happily welcomed). I hate to post this to the

public but I NEED to find answeres! I have had this EXTREMELY PAINFUL AND

IRRITATING problem that when it first started would be almost like every 4

months on the nose but then has become more and more and MORE regular to

almost be weekly and at times doesn't go away for over a week and will often

just hit in the middle or end of a day out of nowhere. OK, the " problem " is

a pain in my chest, very cenetred and over my sternum area that is not

cardiac. I have been told in the past that it was " pluersy "

" costrochondritis " (sp) and most recently given a script for rib and sternum

exrays (not done yet). I was perscribed " Indocin " for any inlammation that

it may be but that literally kills my stomach. The pain is very strange and

it hurts TREMENDOUSLY to breathe and I have had to spend as much as 4 days

flat in bed from it. When it starts I almost hate to even move knowing it

will just continue to get worse for several days before going away. This

has become a regular part of my life that I can no longer deal with! When I

say " bad " pain, I mean BAD. I am on constant pain management for my Chiari

issues and effects of surgery and stroke and etc..... So one would think

that my pain would be pretty " managed " but it is NOT! When it is " here " I

use muscle relaxers, heat packs and pin meds but it only help me to feel

like I can actually " Breathe " and when I remove the heat and try to move I

feel like I am being punched in the chest. I am praying that someone has

some insight of some kind for me? The more I read up on EDS I think maybe

it is that but I truely have NO idea and welcome any input! Please let me

know if you have any info for me.... Thank you, Mindy

June 15, 2012

Ehlers danlos

Sharon Lang

> What is an EDS work up?

>

> De: Hanna T

> Responder a: < >

> Fecha: jueves 14 de junio de 2012 17:42

> Para: <chiariconnectioninternational >

> Asunto: RE: HELP...NEED ANSWERS PLEASE...

>

> Mindy,

> You have a lot going on here. Sorry to hear you are in so much pain. Until

> you can get an EDS workup, you have a lot to deal with.

>

> If possible, go ahead and get the tests they suggested. Even if they come

> up normal, it tells you something, dig into EDS, keep looking inside and

> outside the Chiari community. If it is not normal, and they find

> something, you can start getting it treated.

>

> Sometimes those of us who have experienced a lot and know, really know,

> intense pain, we put off getting things checked for any number of reasons --

> we learned to tolerate pain, we don't want another problem, etc. But, truth

> is, at some point, we have to pull ourselves back up and keep looking.

>

> Let us know what you find out.

>

> Hanna

>

> To:

> <mailto:%40yahoogroups.com>

> From: mindyjc@... <mailto:mindyjc%40msn.com>

> Date: Thu, 14 Jun 2012 06:49:46 +0000

> Subject: HELP...NEED ANSWERS PLEASE...

>

> I have a question that is primarily for those of you with Chiari and/or EDS

> (but ANY insight would be happily welcomed). I hate to post this to the

> public but I NEED to find answeres! I have had this EXTREMELY PAINFUL AND

> IRRITATING problem that when it first started would be almost like every 4

> months on the nose but then has become more and more and MORE regular to

> almost be weekly and at times doesn't go away for over a week and will often

> just hit in the middle or end of a day out of nowhere. OK, the " problem " is

> a pain in my chest, very cenetred and over my sternum area that is not

> cardiac. I have been told in the past that it was " pluersy "

> " costrochondritis " (sp) and most recently given a script for rib and sternum

> exrays (not done yet). I was perscribed " Indocin " for any inlammation that

> it may be but that literally kills my stomach. The pain is very strange and

> it hurts TREMENDOUSLY to breathe and I have had to spend as much as 4 days

> flat in bed from it. When it starts I almost hate to even move knowing it

> will just continue to get worse for several days before going away. This

> has become a regular part of my life that I can no longer deal with! When I

> say " bad " pain, I mean BAD. I am on constant pain management for my Chiari

> issues and effects of surgery and stroke and etc..... So one would think

> that my pain would be pretty " managed " but it is NOT! When it is " here " I

> use muscle relaxers, heat packs and pin meds but it only help me to feel

> like I can actually " Breathe " and when I remove the heat and try to move I

> feel like I am being punched in the chest. I am praying that someone has

> some insight of some kind for me? The more I read up on EDS I think maybe

> it is that but I truely have NO idea and welcome any input! Please let me

> know if you have any info for me.... Thank you, Mindy

>

June 15, 2012

I know what is EDS, I am refering to the work up part, what is EDS work

up??? L

De: Gordon Lang

Responder a: < >

Fecha: jueves 14 de junio de 2012 20:27

Para: " "

< >

Asunto: Re: HELP...NEED ANSWERS PLEASE...