i recently found out after 2 years unanwsered questions, countless visits to the er, trips to 3 major hospitals in the US, 15 medications, and even a heart surgery, that i all i had was EDS. Doctors are not aware of this condition saddly. I was told last week that i will not be able to have children, and that the medication that the other doctors put me on caused major problems to my body, that they are only effective if you are 40+. It has been a long sad road. I have felt alone in this situation. But i will not give up on informing people who are having simular symtoms as POT ans EDS, not to give up and just go with what your Family doctor said...you know your body.. you may not look sick, and your test may come back normal. but only you will know that they are not right. just because u are a women you are not having a panic attack, it isn;t all in your head. sometimes, even most of the time the doctor can be wrong. you have to fight for it. i am young but these two years has opened my eyes to a whole new light. i am very happy that there is a site like this for people with what we have...we are not alone.
_amers

Amers,

Sorry to hear about your hard time lately and the added issues with doc precribing harmful medications etc...

The all in your head etc things are VERY common on here, for many with invisible ilnesses etc, and yes for some reason us women are more often classed as hysterical or hypocondriacs etc.

I have Classical EDS myself...I was advised to not have children either.

I knew something was wrong...and my mom and sister told me that it was normal and that I was just making a big fuss (they have EDS too) but it always seemed like the world was going a lot faster than I...I just couldn't keep up with it.

After I turned 18 things got a lot worse...and so began the diagnostic process. I was diagnosed with EDS after seven months...of PT, appointments...because i talked to people here and I KNEW. I was diagnosed after fifteen minutes with the geneticist. I have been diagnosed with Fibro...with Somatoform Disorder (which has been taken off thank God) and so many little illnesses that came together into my EDS.

I'm glad you finally got your diagnosis...it certainly changes everything doesn't it?

The said for sure hyperMoblity, but my blood pools pretty bad randomly, and out of no where i my heart rate will get up to 190. they said since the change in blood while i am pregnant, it would do much more harm on my body to my major organs and they are afraid of my fainting spells i get from the high heart rate with the blood pooling in my limbs with also my blood pressure that drops in the 60's. The funny thing is it is all due to my loose ligiments and collegen, i have had my shoulder done 3 years ago and they even saw / said they never saw what i had before, but never thought ne thing about it. So with the EDS the tissue never healed right. But it made a good battle scar!

Here's hoping the worst is behind you.

Also, I really admire your commitment to share information. Sometimes, it just feels like a miracle the way us spoonies can connect and help one another.

Nice sentiment - I'll second it. Also, as bad as it's been, many people have had to endure far more years of struggle prior to correct diagnosis.

Hey Amers...I was 19 when I was diagnosed with EDS...I'm 20 now

oh man us young birds! haha well at least we will never wrinkle

sorry for your troubles... it's amazing to me everytime I hear another one of "us" share their exasperating experience of "it's all in your head" before getting the proper diagnosis. >shakes head<

Before you write off having kids... find a Dr who specializes in EDS and or POTS... maybe with the right medical attention your outcome can be more favorable.

I didn't have a diagnosis before I had my kids... and I have two... I have had symptoms all my life (that looking back now are pretty obvious and I want to pop the Dr in the head for not picking up on them) but they didn't become disabling for me until six years ago.

Keep a smile on your face... it helps everything else seem better.

I'm glad that you got a Dx and I hope that things go better for you. I have Classical EDS. I was dx'd when I was 19 and am now 21. I was originally dx with hypermobility type, but I went to Baltimore a few weeks ago to see Dr. Francomano (the best specialist ever, at least in my opinion ) and she changed the type. Classical seems to fit me better than Type III.

As far as having kids goes, I would see a specialist and take some time to think it over. I've been told yes and no to having kids and now I've kinda put the ball in my court and it really just depends on how well managed my EDS is when the time comes and I want to have kids. I desperately wanna have kids of my own some day, but I'm not going to kill myself trying to make that dream a reality, so I always look at the fact that there are millions of kids without parents out there and I could love them just as much as one of my own. So adoption for me is always still an option.

Wow i didn't know how many people actually have the same stories, and care also. i am soo happpy to have found this website. it has given me such a great feeling that i am not alone . So thankyou

May the spoons be with you! And I third the sentiments of hoping that the only way you go is up!