Yeah the whole mast cell thing is very interesting & makes a lot of sense for us too - we have no immune disorder diagnosis per se, but both DD & I seem to have endless problems with various infections & viruses & always seem to come worse off than DH with any viruses - this was part of the reason my DM ended up with the MS diagnosis & they missed the EDS right up until the end of her life.
I've a good friend, who ironically is also in the process of being rediagnosed & they now agree she also has EDS, she has no kidney problems & after reading up on mast cells, has taken to self medicating on bad days with antihistamine & she finds it really helps her
Gongle will PM you my kidney specialist, that will help me remember to update with how I get on, apparently the right type of physio can be helpful, which I'm hoping for, I also have surgery coming up soon for a related condition & apparently we don't react normally to a anaesthetic & it needs to be adjusted - Ive twice woken up mid way through light general procedures in the past & don't want to repeat that, so hoping they will deal with that too & any help would be great at I am generally just dropping to bits - brain fog a night mare or me at the moment too, though I'm on drugs to help dearth with an infection & trigeminal neuralgia, which aren't helping my kidneys at all :-/
saltire could hormones be a trigger for you ??? I ask as hormones known to aggravate EDS - Or losing fitness for any reason ?? -
giving birth is a double whammy on that & was a trigger for me & my friend, plus peri menopause kicked in soon after for me which added to it & I went down hill quickly, though I've since - after a battle had other diagnosis too - gall stones fir example was "a bit if reflux due to the FM" we both had some health problems, but nothing that stopped us really - but she suddenly ended up in a wheelchair after her 3 rd DC - we aren't meant to have natural labour apparently
With my DD she was super fit & no obvious symptoms, though with hindsight she did have some more minor problems - that was until she was bedridden for a few weeks & she never fully recovered at 5, but no real diagnosis bar IBS & exhaustion & growing pains (¬ to transfer my problems onto her ) - then came her first accident at 8, putting her on crutches for several months, losing a lot more fitness & we've been regulars at A&E ever since :( - other symptoms started to escalate more & more as the hormones started to kick in - which looking back all happened with me too as a kid but once puberty settled down, it all eased again too & I managed a very busy full on life without too much trouble - which I'm hoping will happen with DD too.
So in short - hormones or an illness that means you lose fitness & could bring EDS on properly