For years even before I was diagnosed with ERA (enthesitis related arthritis) – if I remember right it was at 11 or 12 years old – I have had jaw pain that always seemed to be accompanied by a lovely cracking/popping sound. I always used to think that maybe I had just moved it funny and it was out of place, and this was reinforced by people telling me that it was nothing, that I shouldn’t worry. Recently I read a study that stated that it is very common for the first signs of arthritis in children and one of the most over looked ones, to be in their jaw. It also stated that this inflammation is often unnoticed by the child themselves, as in early stages it is often not accompanied by pain.This Jaw pain in the last year has intensified, and become almost a constant reminder to me of my illness.
Since I was diagnosed I have learnt and researched a lot about this disease. So much so that my mum, a doctor herself, jokes that although I have yet to go to college, I have a mini doctors degree, and I’m a walking encyclopaedia. One of the things that came as a surprise to me, but is actually quite logical, is that jaw pain can make you feel like you have an awful ear infection, even when there is non in sight.
So along with the crackling, popping and clicking noises that my jaw treats me too regularly, I have had to get used to the added ear pain as well.
But it doesn’t stop there. My jaw at times is so stiff that even opening it slightly is painful, and don’t let me get started on what it’s like to eat. Probably the reason why soft food and myself have become so acquainted. Over time suspected jaw damage has happened. But it’s a sneaky one, happening so slowly, that it was only recently that I really noticed how it has begun to push my teeth together, and in doing this push some forward. One side of my jaw is also farther forward than the other, and this once again can be seen from my teeth and the way the top and the bottom align. I will be going to see my dentist soon, to confirm this, and to ascertain whether I will need to get braces.
When asking my Rheumatologist on Monday whether I could have joint injects, she said no, as she would like to wait to see if the Revellex (Remicade) which I just started will help. This is a decision that I both understand and don’t. I understand wanting to wait to see if the Revellex will work first, especially because cortisone has so many draw backs and risks associated with it. at the same time, I am really in a lot of pain from this, and am worried what further damage might happen while we wait for what could be 2-6 weeks or perhaps even longer for the Revellex to work.
I just wish this disease could be a bit more cut and dry sometimes. But despite what I think, there is nothing I can do to change it. I think I will just repitch the idea when I see her again in two weeks.