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Ehlers-Danlos Syndrome Community
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2192667 tn?1338317805

Anyone NOT have dislocations?

The more I read, the more I think I might have EDS.  I've always been rather flexible.  I think I score about a 7 on the beighton scale.  I've had joint pain my whole life.  I was in and out of the ER frequently as a child with sprained ankles, knees, wrists, etc. and lots of "growing pains."  My skin does seem to be rather stretchy in places, and I often have mystery bruises.  My eyes are bad.  My teeth are bad.  Most of the symptoms fit.  

But I've never had any dislocations or subluxations, as far as I know.  And I don't think I heal all that slowly, though I suppose I might and it just seems normal to me.  

I know this effects everyone differently, so I guess I'm just wondering if there's anyone who's been diagnosed who doesn't have ALL of the typical symptoms.
6 Responses
620923 tn?1452915648

  Hi and welcome to the EDS group.

Not all with EDS will have subluxations....but a 2 on the Beighton scale is considered hyper mobile....

There r several types of EDS, and the top thread here has links to videos by a Dr that also has EDS, each one explains the diff types of EDS we all may have.

For the record, I do have the subluxtions...joint pain, soft skin, but it is not as stretchy as they describe it typically is....I do also bruise easy and am slow to heal.....

But never when I was growing up did I consider myself flexible.....

  I think like chiari we all will have variations on the list of symptoms, but we all need to get it checked out to see just how it is affecting us.
2192667 tn?1338317805
Thanks, Selma.  I watched some of the videos, and they were very helpful.  
620923 tn?1452915648

  Glad they were helpful, do u still feel this could be a dx for u?

I really feel it is like Chiari, u need the right Drs to help u with this.....
2192667 tn?1338317805
Sorry for the brief response earlier.  My brain was foggy.  :P

I do think it's a possibility.  I have a lot of the symptoms, as do other members of my family.  That's the main thing that's making me wonder.  Even my grandpa was pretty bendy, and he lost all his teeth before he was 50.  My mother has a lot of the same symptoms I do, and my little sister has the same sort of joint pain I had as a child.  

It's definitely something I think I should look into as soon as I figure out how to work around my financial limitations.  
620923 tn?1452915648

  I know it can be so difficult to afford to find out what is going on and treat it....stinks.

Please keep me posted : )
2192667 tn?1338317805
It does stink.  But hopefully I can figure something out.  

Thanks!  I'll let you know if/when I get somewhere.
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