Sorry to whine - blood vessel swellings

[Guest guest]

I'm going to apologise straight off as this is a bit of a whine, but

I'm feeling a little sorry for myself tonight. As you know, I've been

having these weird bleeding issues (Prof Bird feels are due to my

variant of EDS/Marfan) where the vessels burst and spurt through my

skin, then cause large, painful haematomas. About a fortnight ago I

had a really bad bleed in my left wrist, it bled a lot and then it

ballooned up alarmingly creating a large pulsating sac within the

vein. It eventually settled down but it hasn't quiet felt right since

and has been very sore - especially as I need that wrist splinting

due to subluxations of the Triquetrum and Lunate bones.

Now though I have started getting painful swellings in the vessels

leading into my hand, some of which disperse but most of which keep

growing in size and pain level until they actually rupture. I've had

three in the past 24 hours and now sport a lot of bruising in the

wrist and hand and already have two new pulsating bulges in the same

area. I'm still getting spontaneous bleeds and bruises in my legs

too, but I have to confess that this wrist is concerning me the most.

I'm planning to start monitoring my BP levels to see if I get any

spiking coinciding with the bleeds...thanks Caro for that advice. But

beyond that I'm pretty puzzled and more than a little concerned about

repeated ruptures and of course the risk of clots too.

I'm sorry for the whinge but I'm just a bit bemused and scared by my

freaky, mutant body's latest trick at present. Thanks for listening.

I hope everyone is having a good and I send lots of good wishes and

thoughts to you all.

Love and hugs....Jo

xxx