Bit of a win for the day, I think? Had my first rheumatology appt (privately, waiting 3+ years for the NHS was not the vibe), HSD confirmed/diagnosed. No rheum really specialising in HSD/EDS in Northern Ireland, so I just went with someone who had a reputation for being nice :) As expected, there was the “there’s not a lot to be done other than physical conditioning and keeping moving, the NHS doesn’t offer anything for it - you seem to already have a great physiotherapist ” but shes going to write a letter to my GP to discuss some pain relief options for bad flares, and short term solutions for sleep issues to hopefully break this persistent, 9 month flare that’s just been a domino effect of new joint issues that never existed before. Will probably never know what’s caused my HSD to be aggressively symptomatic after never having an issue with my joints or back before last year - and I went in really knowing it was HSD (I even listed the 2017 criteria I had for hEDS despite being 2-3 points short), but its nice to have something to point to when my family/friends/work are confused and looking at me as a hypochondriac when my back was bad last week, but now I’m agonising over my elbows, and it’ll probably be my knees next week. #diagnosis #hsd

Posted by Chloe.AH at 2023-07-26 12:32:59 UTC