First JHS/EDS appointment
19 Aug 2015 09:38 amSpoke to my GP about joint hypermobility stuff. She seemed happy I knew what I was talking about, checked out my knees, elbows, back, and whether I could touch the floor, and I went over the list of joints I get pain in ("that's a lot of joints!").
I don't have obvious external symptoms of scoliosis, even if it shows up on my CAT scans.
I have "some of the symptoms" of joint hypermobility and/or EDS.
UCLH hypermobility clinic is tertiary care; to get a referral there I'd need to get one from secondary care, and she's not going to refer me to secondary until stuff she can suggest isn't working.
Actions:
I'm going to look at pilates and swimming, as they're both exercises that I can do that should help my strength without hurting my joints any more.
Although she's said she doesn't want to refer me to secondary care just yet, she's going to have a chat with her colleagues to see if they have had luck providing referrals at this relatively early stage.
She is going to get me a podiatry referral for orthotics, after my physio suggested that.
If I get to the point where I need painkillers regularly, or they're not helping the pain, or I've been exercising regularly for 6–12 months and things aren't improving, I should go back and get that referral.
Incidentally, I am very much in favour of (i) GPs who aren't intimidated by me having done research on my condition (*cough* Dr Appleton), (ii) who aren't dismissive of what I want to talk about (Dr Keating), and (iii) who explicitly list and agree actions coming out of the appointment.