“In the past I was very naïve over subluxation & dislocation of joints thinking that it would only happen in cases of extreme injury, boy was I wrong [sighs].  My first instance of dislocation occurred around my teens, I was swimming & the water temperature gave me cramp (which may have been down to my more recently confirmed Raynauds), next thing I know I’m looking at my foot & my big toe is bent at right angles & I’m having to gently massage my foot to coax it back into place [Eeek!!!]. Well this used to happen on rare occasions from here on, I’d get cold or sit awkwardly & next thing I know there it would go again [rolls eyes].
More recently however, it’s now not so much my feet but my hands that are suffering. I don’t even really know why [sighs], I’ll be fine one moment & the next my little fingers are bent & locked in awkward, painful positions before I coax them back into place [Ouch!!!]. It is happening on an ever increasing basis making it sometimes awkward & painful trying to eat, hold my children, drive our car or perform other simple tasks :'(.  The added frustration comes when the Dr/GP simply states ‘That’s part of your EDSH/HMS’ & that’s that, we’re expected to deal/manage with it :(. I don’t know what I’d expect instead – medications, more physiotherapy, corrective operations?….[sighs]. It would just be nice sometimes to hear ‘Oh yes, I can help you with that’ rather than ‘You’ll have to learn to deal with it’. Ok, rant over, time I grab a cuppa”

How many times have we heard this message  – ‘That’s part of your EDS & that’s that, we’re expected to deal/manage with it.”?

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