Heya gang, hope everybody's holding themselves together alright!
I've been having a bit of an eventful month (not socially, just disease-wise) and was wondering if anyone else has experience a huge flare-up where everything starts popping and new joints start falling out etc etc for what seems like forever. I usually sub and dislocate in the patellas, toes, fingers and right shoulder, and all of a sudden my jaw fell out on one side, my other shoulder went and both hips, within weeks of each other.
I'm feeling pretty under the weather, but I couldn't explain how so - just got a bad case of the tired and poorly I think. Other than that I don't know why it's turned from a three piece band into a symphony so suddenly.
I had great news about two months ago - although it sounds like bad news - when they diagnosed POTS and put me on ivabradine. I was suddenly sleeping well all night, not napping, all IBS symptoms gone and confirmed by my gastro as misdiagnosed previously and actually tachycardia induced symptoms. But now it's like all the good internal organ work has been undone, and despite my heart being down from approximately 140bpm to 100bpm my joints are playing anarchy.
Another thing I was curious about is whether anyone has problems (non-dislocation problems) with their hands. My OT has diagnosed lateral deviation of my index fingers, based on what she thinks is one of my tendons on each finger playing loosey-goose instead of doing its job. In an article by Beighton and Horan, 1969, they have a great picture of a hand doing what mine's doing in x-ray, but I've not seen it mentioned anywhere else.
So really this is just a huge list of 'this isn't just happening to me' sort of queries, and a way to kick off a giant EDS conversation. Oh, and if anyone's heard of any new research going on, let me know! And send the rare disease pledge to your MPS so they don't forget about us while they fight over the NHS and the economy - see this link pledgeforpatients.org.uk/.
(Atypical classical EDS, if you want my official diagnosis).