Hello -

My name is Linda and I too have Ehlers-Danlos and was just recently diagnosed
with Fibromyalgia in August. My biggest problem is the constant pain - I have
never had any surgery due to joints, bone or muscles, etc.. I am 44 yo and the
mother of 6 children. The oldest 5 have been diagnosed with EDS. My youngest,
who is 2, I am sure also has EDS as she is such a little pretzel already:)

Our oldest daughter had severe scoliosis and had major surgery when she was
14. She is now 20 and everything is still much better for her now. I have a 12
year old daughter recently diagnosed with Mitral Valve prolapse, which we are
keeping an eye on. My oldest son who is now 17 was inthe ER constantly as a
baby, because he kept popping out his shoulders, elbows, and knees. At that
time I cannot begin to tell you haw many Drs. questioned us about how did this
"really" happen?? We had no idea at that time what the problem was. We had
never heard of EDS until a few years ago.

I still work full-time and go non-stop. I believe that if I go doen the path
of letting the pain take me over then I will never be able to "bounce back"
Don't get me wrong, I know first hand that the pain can be so bad for so many
that there is no other choice, but for now i keep going one day at a time. My
upper back and legs seem to be the worse, and sometimes I just don't know if it
is Fibro pain or EDS pain, but I guess it doesn't really matter. I am on
medication for the painand also a muscle relaxant to sleep at night, but I can
never find the 8 hours a night to devote to the sleeping pill, so i rarely take
it, which is not good, because then I have a restless nights sleep and the cycle
keeps going round and round.

Another of my biggest problems right now is FibroFog - I find it very scary
and it is getting worse. I will often find myself in the middle of a sentence
not having a clue about the word I was just going to say next. i laugh it off
most of the time, but it can be extremely frustrating.

The best news I have is that I have a Dr. who is extremely understanding and
knowledgeable with Fibro, the EDS is a different story though - there are not
many doctors that I have come across that even know what I am talking about. So
I too do a lot of research and bring it to them.

How are your children - do they have any signs or symptoms? All of my kids
complain of the chronic leg pains - My 10 year old son complains almost nightly
and I remember both of his older sisters doing the same thing. At that time
though, the Dr's told us it was just growing pains.

It was nice "meeting" you. Hope to chat again soon.
linda






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!






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