-Hi, my name is Megin and I also have Fibromyalgia and was just
recently dx with EDS-Hypermobility. I know how frustrating it is to
get dx'd with anything such as Fibro or EDS. I am 29 and was dx'd
with Fibro at 23. It took me all most 3 years and numerous doctors
to finally get dx'd with Fibro. Getting an EDS dx was the easy part.
I too have similar problems with my shoulders dislocating. I all so
have problems with my fingers, knees and toes as well. The best
treatment that I have every recieved was from UC- San Francisco. I
was test patient. I was put on an anti-convulsive med called Keppra.
Since I have been on Keppra, I have only had to have two pain
injections. I have a web site that you can check out to find if
there are any clinical trials in your area for EDS or Fibro. I know
how it is to be in pain everyday and have people tell you that it is
all in my head or if I would lose some weight, then I would feel
better. My best advice is not to give up. Some out there will hear
your call and be able to help you out. It is very nice to know that
there is someone just like me out there. Someone I can talk to about
my woes about.
-- In ehlersdanlossupportclub@yahoogroups.com, "catina_frantz"
<catina_frantz@...> wrote:
>
> Hello everyone. I just wanted to introduce myself and say hello.
I
> was recently diagnosed with EDS and with Fibromyalgia. Those seem
to
> be just two of my many diagnosis... but now I am wondering how
much
> of my other problems all run back to those two conditions. I was
> very happt to see that there was a group of other EDS people to
talk
> to... I am just starting to do research on these diagnosis and
would
> love any input you could give me.
>
> My main problem right now is pain... it seems like I have been in
> pain forever and finally feel like I am not some hypocondriac.. or
> some pain pill junkie.. or some liar.. or some mental patient...
just
> a few of the things I have been told in the past!! Finallly I
have a
> NAME to put on it!!
>
> I am not sure how you fake dislocating joints.. but I have seen
> doctors that seem to think it can be done... and jeez... who would
> WANT to??? It isnt exactly a FUN experience... not to mention the
18
> knee surgeries I have had because of it... yep.. those were a
barrel
> of laughs too!! It is so strange to me to think that I have seen
so
> many ortho docs... and had so many surgeries and NOT ONE of them
came
> up with this diagnosis... I had to do it myself...
>
> I am not sure what everyone thought of the show that was on
> recently... but by the time it was over I was on the computer
> researching.. and crying... so many things fell into place.. and I
> found myself going.. HEY.. cant everyone bend their fingers like
> that?? I never knew I shouldnt be able to do THAT.... WOW.. I am
NOT
> CRAZY!!
>
> Anyways.. I didnt mean to write a book!! I hope to talk to all of
> you lots. OH.. I am 33 and have a 9 yr old son.. and a 7 week old
> son.. I am married and live in Kansas!
>