aruiane I now now a bit about EDS, so kniw they are similar/same conditions & same here & what keeps going round in my head is what the specialist that diagnosed my DD said - JHMS is closely linked to Fibromyalgia - even the NHS blurb describes the over sensitivity to pain etc & I know too well that with FM if I over do things & push through being ill to get things done etc, I get very ill indeed & it IS very much like flu, known as fibro flu - but I don't think to ask as the time & asking our GP & school nurse has been a waste of time - I do have a referral myself, so I am hopin to get an answer then, because I see so much of the same in DD that I deal with myself, though they now think my M.E. diagnosis is more likely JHMS too, hence the Rheumy referral - if I get an answer I will post it
Katy a lot if that sounds so familiar to me - it took 5 years for me to finally get a Rheumy referral for my DD, though my initial worry was that she had FM too - I was patted on the head & told not to transfer my own health issues onto her it took my getting really stroppy & coping notes from GP appointments & submitting it back in writing to finally be taken seriously & I was right, though I only learnt about JHMS due to a friend who has it on Facebook sending me a link that joined the dots of all my DDs symptoms into one condition - including her diagnosed IBS - DH & I are both hyper mobile - ie extra flexible, at least I was, so to us DDs bendiness was all just normal, we had no idea it could be a medical condition.
I would recommend you look into it - joint hypermobility syndrome - how you describe your DD mood sounds very familiar too & is also a symptom & I remember you posting about her dance, the flexibility of JHMS/EDS DCs gives them an edge with things like dance, gymnastics & guitar & like I said above, they now think it is my real diagnosis too - not M.E