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  • Ehlers Danlos syndrome

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    Old 05-31-2013, 01:43 AM   #1
    teleute
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    Question Ehlers Danlos syndrome

    Is it possible to have Ehlers-Danlos syndrome without having ridiculously flexible joints?

    Yesterday I was diagnosed with EDS and fibromyalgia (which I most certainly do not have!) but I think my rheumatologist is a quack. I've also never dislocated a single joint; they just get swollen and visibly inflamed. I do have the majority of the musculoskeletal, skin, neurological, and neuro-cardiac symptoms, but most (if not all) of these could easily be autoimmune in nature. I'm waiting on my blood work.

    Sooo... is it even possible to have EDS without extreme joint flexibility and dislocation?

     
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    Old 06-11-2013, 07:03 PM   #2
    MountainReader
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    Re: Ehlers Danlos syndrome

    Sorry for the late response. I haven't been diagnosed, but I suspect I do have EDS. There is a beighton are brighton scales that you can research. They are pretty standard as diagnostic tools. From what I understand of EDS, there are multiple classes of kinds. Not all involve extreme hypermobility.

    I know in my case, I'm hypermobile some, but I sublux in small amounts and have ligament laxity in some of my joints. No dislocations or anything like that, but I meet the Brighton and Beighton criteria as I read them.

    If you want a confirmation of the diagnosis, the best thing to do is to see a Geneticist trained in EDS.
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    Old 06-08-2014, 01:05 PM   #3
    moeglein
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    Re: Ehlers Danlos syndrome

    I don't know that I would call my fingers ridiculously flexible or not, but they account for 4 of the 5 I score on the Beighton scale.

    EDS patients can have a bunch of other issues. I have MCAS and G6PD deficiency, I'm pretty sure. Bottom line is that I suffer from debilitating pain, and it sounds like you do, as well.

    Last edited by moderator2; 06-08-2014 at 01:46 PM.

     
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    connective tissue disorder, ehlers danlos, genetic disorder, inflammation, joint pain



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