Saturday, March 22, 2008

I have EDS... oddities explained!

Hi =)

I have EDS type 3.. for years i was told I just simply had "loose ligaments" in my feet and hips and SI joint where i'd have recurring problems. or last year that I was just "slow to heal" when I broke my foot..and i spent 6 months on crutches for a break that didn't even show up on Xrays..

mom searched for help when i was a baby..I didn't walk until i was 17 months old. She describes it that whenever she would put me on my feet, I'd curl them up and cry and scream like I was in pain...

I still had 4 baby teeth when I was 15yrs old. The only thing that got the baby teeth outta my mouth was my sister when she decided i'd be her new project (i think she just liked causing me pain).

I have what I have for years referred to as "See-through skin!" While I don't have type 4... I think this is a crossover trait for me? Not only on my chest and upper arms and feet but U can trace all the veins in the palm of my hand from my forearm, thru my wrist, up my palm and to my fingertips.

I'm not sure if I'm considered to have soft velvety skin..except that for years, numerous people have told me "WOW ur skin is soft!! u must use a lot of lotion!" - ....I almost NEVER use lotion. and esp on my arms and stuff. lol

I bruise easy. Not as bad as some but i go through spurts where its almost like i break out in bruises...having no recollection of where i got them. one time i counted 6-8 bruises on each extemity at one time.

I am hypermobile. fingers, toes, according to the PT i saw a few yrs ago, they said my hips and SI joints were" very loose" but that my low back and hamstrings were abnormally tight... b/c they were tryin to over compensate for the loose ligaments. Also in my feet. spent i think about 4 or 5 months in my walking boot..and the physical therapist i saw throughout the whole time, was amazed that i had no "range of motion" issues after bein immobilized for so long. she also commented that I had "loose ligaments" in my feet. I know my shoulders are too..and my wrists. I use to get a lot of sprained ankles and wrists but luckily I havnt had those injuries for awhile. either my ankles are more durable than they use to be, or im just more careful.

i have sciatic nerve pain from my SI joints and lately i was laid up for a couple wks b/c that joint was loose, moving around too much and causing intense muscle spasms in my back.

for as long as i can remember..any sudden movement like jumping or even just when i'm walking... i'll get random SHARP pains in my feet that make me stop in my tracks.. wiggle my foot, and try the step again. my mom gets it (she has EDS as well) but no one else i've ever described it to had any idea what i was talking about.. i'm thinkin now maybe one of those little bones in my feet move around sometimes and subluxate as i walk?

I get the same/similar pain in my hands sometimes.

doctor didnt really believe me as to how i broke my foot... I was walking. barefoot. and i kinda tripped on my own foot.. it LITERALLY bent itself in half down the center, then my ankle turned bad.

I am a total clutz, i run into stuff and I fall down a lot.

I average 1-2 ligament/tendon-related injury a year. not too bad, pretty manageable actually.. Have ever since... probably 3rd grade. Theres a reason why my friends call me "gimpy" and "hop-along" lol =)

I almost always hurt myself doing normal every day things.. like walking.

I own my own set of crutches, multiple ace bandages, a knee immobilizer, a walking boot etc etc.

I never ever would have considered that I actually had a syndrome or condition to explain my little oddities... i figured i was just a clutz and chalked it all up to that.

Then I worked with a nurse who has EDS, she told me about her daughter..and in our conversation, she said some of my weird medical family history stuff sounded an awful lot like hers.. so she wrote the name down and i promptly forgot. till 2 wks later when i broke my foot and i was laid up.. so i found the little sticky note and OH MY GOSH.. it was amazing. everything was explained (mostly with weird stuff thats happend with my mom.. no one has ever been able to explain..until now!). We then got properly diagnosed and here we are...

My present goal is to try PT again.. and get my hips and SI joint to stay where they should. going to the PT lady on Tuesday...*crosses fingers*

i also joined a real i want to try to get in better shape. develop the muscle tone to help stablaize things better.. but i want the PT's help to do things the right way..assuming i get a decent one. I wanna print info about EDS for them too.. so they know why/how we are different..
should be interesting!

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