me_and: (Default)
2015-08-19 09:38 am

First JHS/EDS appointment

Spoke 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.