I have quite a complex case and am curious is I should look into
POTS...everntually....I also have syringoymelia form c2-t10 and has
now perforated my spinal cord so we do know that is the cause of my
pain. In australia we don't have much help or knowledge
unfortunatly. I also have been thought to have chiari 2 as well
(radiologist debate). I was once told that I have hyper sensitive
nerve path ways and thats why I was in so much pain, however liek
above my pain is not out of proportion...in fct I am praised for my
pain threshold...just ask the person who did my 8th piercing :P

What is this CEDA? I had a quick look but couldn't find anything
yet. I kinda get it could mean chiari ehlers danlos
association.....I'll google it again and see what I get.
--- In ehlersdanlossupportclub@yahoogroups.com, "cindy" <c-
clark05@c...> wrote:
>
> --- In ehlersdanlossupportclub@yahoogroups.com, "kirafae1986"
> <kirafae1986@y...> wrote:
> >
> > Hello I am new to this group. I have type 3 hyper extensive
ehlers
> > danlos. I also have chiari malformation. I'm curious if anyone
> else
> > has had this double up and what sort of complications it has
> caused.
> >
> ********************
> Hi, My son has EDS and Chiari. He is 18. The National Institute
of
> Health and The Chiairi Institute in NY are working together on
this
> combination of patients. My son has gone to both places for a
> workup. Both conditions where found on the same chromasone just
> months ago. So they now know they are related. The Chiari
Institute
> has found that one out of every 3 of thier patients have EDS also.
> The compications of the two conitions together are being studied
> now. It is believed that this creates a pain syndrome. Pain that
is
> out of proportion to the problem. Also high insodence of Autonomic
> Dysfuntion/POTS. There will be more info soon coming from the
> continued work they are doing.
> Sorry for my spelling mistakes, I do much better with spell
check :~)
> Cindy Clark
>