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Hypermobility Syndrome or EDS?

Posted , 5 users are following.

melody122704
melody122704

I understand that these two syndromes are very similar (depending on the type of EDS at least) but I'm wondering if my symptoms match up more with hypermobility syndrome or EDS. My elbows, fingers, thumbs, and shoulders all bend beyond the normal range. I get heart palpitations and recently got referred to a cardiologist (I understand that EDS can cause mitral valve prolapse) but I haven't been tested for anything yet. I've only been diagnosed with Arrhythmia. I always get cuts and bruises from causes unknown to me. It's been that way for as long as I remember. When I was younger and more active (when I was 5-8 maybe) I would get countless cuts and bruises. Now, not as many, but still enough that I would consider it easy bruising. If this does sound like EDS, I have no idea how to bring it up to my parents. I know that my mom would instantly shoot down the idea of some genetic connective tissue disorder, especially since it's rare (which I've heard is probably more common than thought to be since it's speculated that lots of people are misdiagnosed with other conditions). I've never dislocated anything though and I don't think my skin is that elastic. However, I constantly hyperextend my knees and elbows. I also get fatigued, have TMJ, and am flat-footed. I've also had severe reflux problems that were treated with medicine. I still get heart burn and sometimes the nasty taste of reflux in my mouth, but not nearly as frequently as I used to. I'm sorry if this is a lot, but I really want to hear your opinion >.< The only things that make me unsure of possible EDS is the fact that my skin isn't very elastic and I've never had a dislocation.

0 likes, 2 replies

2 Replies

  • denise79180
    denise79180 melody122704

    Posted

    Hi. I would find a Dr who knows about EDS and JHS. It's not really something that can be diagnosed on a forum. I'm sure you have pain and your parents would do anything to help you sort this out.

    Good luck. It really is tricky sorting it out and finding the best way to deal with things.

  • erykah71
    erykah71 melody122704

    Posted

    Hi Melody,

    Have a look on the Ehlers-Danlos Society site (ehlers-danlos.com).

    They have loads of information regarding EDS and HSD. Just because you don't dislocate or have over stretchy skin doesn't rule out EDS. I have hypermobile EDS (hEDS) and I rarely fully dislocate joints. Mine will sub-lux rather than dislocate.

    Also, a diagnosis of hEDS states mild skin elasticity (mine stretches on back on hand) and smooth velvety skin.

    Family history is also a give away. Is your mum or dad flexible?

    Since March of this year, the criteria for diagnosis of EDS and hypermobility syndrome (HSD) has changed quite considerably, but the EDS society have a link to a chart which you could print off, fill in and if you feel you have EDS, take it to your doctor and express your concerns.

    ehlers-danlos.org is another fantastic site, with lots of information, advice, support groups and more - worth becoming a member, which I believe is free now, which allows you access to their facebook group as well as other things.

    Hope you get a formal answer to your symptoms soon, and feel free to message me if there's anything you need help with

    Hope this helps

    Ery  

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