I’ve been diagnosed with EDS which encompasses all body systems, causes pain, and disability and is misunderstood. Sound familiar? I’m hoping another member can relate in some way. Feeling crushed again.
There’s quite a few people here that have hyper flexibility but I’m only thinking of one person with EDS. @Jules_G ?
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Hi Michelle3, sorry to hear you have another diagnosis to deal with. I don’t have EDS, I think it’s @Sybil that @Stoney is thinking of (we’re both Brits) … I’ve tagged Sybil and as we’re friends outside the group I’ll give her another nudge and see if she’s around. In the meantime Ben’s Friends has (or certainly used to have, I think) an EDS community so you could join up with them too. In the meantime try to remember PsA and EDS are both connective tissue conditions and many of the symptoms, treatments/therapies and advice for one is common to the other and so this may help you come to terms with acceptance … it’s been a mindset that has certainly helped me over the year when I’m in a ‘here we go again’ scenario.
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Thank Jules. I appreciate it. I knew there was somebody that fell into that category
Ben’s friends does have an EDS group, but it tends to be fairly quiet
Thank you for all of the provided info and support.
It’s a rare diagnosis compared to PsA. I just need a couple people I can ask specific questions. I know about the Zebra site which is specific. Thank you Stoney
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