Eds Without Stretchy/thin Skin?

[MelissaCrystal]

So I'm on a mission to find out what's causing my POTS and a lot of my symptoms fall in the EDS category. I dislocate my hips a LOT and I have floppy, hyperextendible ankles that I roll constantly and injure. My knees are also in bad shape, and I sprain them a lot. My skin is more stretchy that my boyfriend's, and I can impress him with it, BUT it's thick like a normal female's and isn't anything like the pictures I look up in google. It is very soft, but just like a normal female's. I do have hyperpigmentation on my nipple and finger, but that's all. I burn easily so I have to stay out of the sun, and melanoma runs in my family. I'm very pale with light colored eyes, but I don't have blond hair.

One skin problem I do have is atrophic scarring, that are thin, and stretches over time. I scar really easily and really badly. I also bruise easily. And my skin breaks at the corner of my mouth (angular chelitis), my nostrils, my earlobes, anus, fingers, and gets irritated on the corners of my eyes VERY easily. I also heal slower than normal.

I'm trying to help my doctor with diagnostic testing ideas to get down to the cause of my POTS, but I don't want to bring up EDS and act like a hypochondriac if I'm nothing like an EDS patient.

Is it possible to have EDS without the elastic skin element? I've seen that the Hypermobility version (as opposed to the classical) of EDS capitalizes on the joint aspect of the condition, but I don't know if that means that maybe the skin isn't an issue sometimes.

[mkoven]

indeed, yes, with the hypermobile type. and skin can have subtle stretchiness. i didn't think i was stretchy till i compared how far the skin on my inner forearm puuls out compared to others. it's not huge, but more than normal. the extreme pictures on the web do a disservice, as they make doctors and patients think they have to be extreme to have the syndrome. you might want to check out www.ednf.org

if you do see a doctor, find someone with experience. i was told i was fine by a rheumatologist who doesn't see much eds because i'm not off the charts bendy or stretchy. but how many subluxations and injuries do you need to know you're not like other people? ednf has a list of knowledgeable physicians.

i find having the diagnosis helpful, as it helps explain all my weirdnesses.

[delphicdragon]

You can definitely have EDS without the stretchy, stretchy skin. I do! I have the hypermobile type of the disease.

I'm not blond or pale or have blue eyes (except the sclera; that's the white part). Basically if you have the cigarette paper scaring and dislocate, I would say that you have EDS. Have you tested yourself on the Beighton Scale? http://www.hypermobility.org/beighton.php. I score a 9/9.

I would agree that you need to find a doctor well versed in this disease. Ortho said for years that I didn't have it because I didn't have the stretchy skin, then I gave him a paper on the hypermobile type and he completely changed his tune. Now he likes to say he diagnosed me because he said I was hypermobile long before the geneticist did.

I saw a rhematologist who dislocated EVERY joint and then told me that all women did that . I insisted on the referral to a geneticist and she is the one who official diagnosed me. (Make sure you make the doctors think they are diagnosing you even if you know what the final answer probably is... ie mention your hips and ankles and stuff, "normal" people don't dislocate without a LOT of force involved.)

http://www.ednf.org is a great place to start to get more info. PM me if you want to talk about EDS or see some pics of hypermobile EDS. It stinks to have it, but at least gives you an idea of what is wrong and whether you need to take certain precautions. (Getting an Echo regularly, for example).

Sara

[MelissaCrystal]

You can definitely have EDS without the stretchy, stretchy skin. I do! I have the hypermobile type of the disease.

I'm not blond or pale or have blue eyes (except the sclera; that's the white part). Basically if you have the cigarette paper scaring and dislocate, I would say that you have EDS. Have you tested yourself on the Beighton Scale? http://www.hypermobility.org/beighton.php. I score a 9/9.

I would agree that you need to find a doctor well versed in this disease. Ortho said for years that I didn't have it because I didn't have the stretchy skin, then I gave him a paper on the hypermobile type and he completely changed his tune. Now he likes to say he diagnosed me because he said I was hypermobile long before the geneticist did.

I saw a rhematologist who dislocated EVERY joint and then told me that all women did that . I insisted on the referral to a geneticist and she is the one who official diagnosed me. (Make sure you make the doctors think they are diagnosing you even if you know what the final answer probably is... ie mention your hips and ankles and stuff, "normal" people don't dislocate without a LOT of force involved.)

http://www.ednf.org is a great place to start to get more info. PM me if you want to talk about EDS or see some pics of hypermobile EDS. It stinks to have it, but at least gives you an idea of what is wrong and whether you need to take certain precautions. (Getting an Echo regularly, for example).

Sara

Yeah I just dislocate my hips while walking or getting out of chairs. It's the most painful thing in the world, scares the crap out of me whenever it happens, which is way too often. Hard to recover from too.

Thanks for the info, I'm going to go to your links and let my doctor know about it. Thanks! ***** that there isn't a cure, but the more knowledge the better.

[mkoven]

It made the various pieces of the puzzle fit togetehr for me. Instead of feeling like a crazy person with 20 different problems, I have one underlying problem with 20 different manifestations. And I"m really not that hypermobile

Indeed, normal people don't dislocate. I think my mom has a mild version, though she claims it's normal to dislocate hips. I asked my pt about this, and she said that the hip is one of the most stable joints in the body. No, normal people don't dislocate hips easily. A normal perosn might have a single unstable joint from injury or overuse, but they won't have problems across joints.

[MelissaCrystal]

Indeed, normal people don't dislocate. I think my mom has a mild version, though she claims it's normal to dislocate hips. I asked my pt about this, and she said that the hip is one of the most stable joints in the body. No, normal people don't dislocate hips easily. A normal perosn might have a single unstable joint from injury or overuse, but they won't have problems across joints.

That is VERY interesting. Thanks for letting me know, I'm going to bring it up to my doctor. I had no clue that hips were supposed to be so stable. I can dislocate my hip whenever I want, of course it's very painful, but it seems like all I have to do is flex a muscle weirdly or step on the ground in a different way and it pops out and does this gross shifting feeling of that muscle snapping to one side and letting the ball loose. So gross and SO painful. I guess now that I explain it, it definitely doesn't sound normal to me now. Funny how when we grow up with stuff like this we think it's normal.

[flop]

I can remember reading about EDS years before I was diagnosed with Hypermobile Type EDS. A lot of the symptoms seemed to fit with what I had (even before I was ill with POTS). I remember saying to my sister "look I can stretch my skin I think I have EDS", her reply was "no, that's normal - look I can do it too". Silly really that I didn't consider that maybe she had EDS too! (She hasn't been officially diagnosed but when I saw Prof Grahame in London and described my family he thought that both my Dad and my Sister probably have EDS too).

Flop

PS - my skin is no-where near as stretchy as some of the pictures in books / websites (they always choose dramatic examples).