What is up with me?!

sugar_spun_sister Member Posts: 5
I was diagnosed with JRA in one knee at the age of 11 and told it would probably go away. It hasn't gone away and I now also have patella femoral (sp) arthritis as well. Recently, in addition to my knee pain, I have been having a lot of pain in my jaw and can't move it properly. I only have co-codamol for pain relief which sends me a bit mental and am attempting physiotherapy but am struggling to get going with the exercises.

Could the jaw pain/restricted movement be linked to the JRA? I have asked doctors and not got any decent response - they generally just tell me to go away and come back when I'm older! :shock:

Anyways, any advice on whether the arthritis may be spreading and what steps I should be taking?



  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Sugar,

    I am sorry your having a bit of a rough time there. The helpline folk will be in come the morning but I just wanted to say are you due to see your rumo soon? If not maybe you could ask your doctor to refer you sooner?

    I do hope you can get to the bottom of this. Cris x
  • wibberley
    wibberley Member Posts: 421
    edited 30. Nov -1, 00:00
    Hiya, I've had JRA (JIA, Still's.....they can't even agree on a name for it) since a young age, and have come to the conclusion that the professionals still don't understand a lot about it, hence the shrugging of shoulders....or stupid answers every time I ask a question!

    I've been unable to properly bend my knees since being a kid - don't know if that's because of the JRA or lack of physio at the time?

    If you do get a proper explanation, let me know as I'd be interested!

    Lois x
  • helpline_team
    helpline_team Posts: 2,786
    edited 30. Nov -1, 00:00
    Dear Sugar,

    Welcome to chat to Helplines. I hope we are able to signpost you and be a support. I don't know how old you are now and whether you are under a paediatric rhumatologist - but for juvenile arthritis they tend to be the key specialist.

    How long have you been in the NHS system with all of this? I wonder whether your arthritis shows up in blood results? I wonder whether your arthritis is described as 'inflammatory/immune system'. Generally where the blood shows what's happening and it's immune system then people get offered treatments like methotrexate (disease modifying drug - dmard).

    If your arthritis does not fit into this picture, then that may explain if your treatment is different. On the different question of your jaw, a dentist could say whether you need a specialist referral to a dental hospital.

    I'd encourage you to ring us if you'd like to talk things over and find out a bit more.

    hope that helps


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