Pain in Jaw (only on one side - ongoing for a year)

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Hi there! First time post but I wanted to see if anyone else has similar pain?

I have rheumatoid arthritis and was diagnosed in November 2017. It first started in my feet and then spread. The worst joints are my fingers as they are still swollen today since late 2017.

However the area that gives me the most pain nowadays is my jaw joint or TMJ (only on the left side) which has been ongoing for almost a year now. I can't remember exactly how it started, as I feel like all I've known is the pain I now have. I had an x-ray done in October 2019 which showed quite an obvious erosion on my left TMJ compared to my right (they used the term "moth-eaten"). 

The doctors weren't sure whether the pain I was experiencing was joint or muscular, so we first decided to explore the muscular option and I had botox injections done in my cheek muscles (both so that if my face were to change it would be symmetrical). This was done at the start of December 2019 and I was told I should feel the effects straight away and the pain should eleviate at least for the next 2-3 months. I definitely felt the effects immediately as I was having dinner soon after the procedure my mouth grew very tired and I couldn't chew much more. Unfortunately even though the botox worked, it meant that I couldn't feel any muscular pain and instead the joint pain was somehow intensified (right in time for Christmas!).

Next step was dealing with the joint pain, so I was scheduled in for an ahtroscopy appointment which meant having the joint flushed out but also for them to take a sample to see if I had any rheumatoid factors (the antibody that thinks I have an invader inside my body so decides to send an army - inflammation). This was done at the start of March and a follow up appointment was due to take place in May. Now Covid-19 has come along and taken the spotlight, I have no idea when my follow up appointment will be. As it was done at the dental clinic at Guy's Hospital in London and they have no structure in place for telephone appointments in that departure...I am left waiting until whenever to see what's next. 

The pain in my jaw is so bad I can barely eat solid foods, smoothies for breakfast and soups for lunch/dinner. I take co-codamol at least 3 times a day to ease the pain, but it is still there. It greatly effects my mood and it's very rare I feel happy. I'm scared to yawn due to the pain!

The doctors did mention that a lot of people can experience their jaw clicking and this is down to (I think, can't remember the exact technical terms she used) their articular disc slipping out, but usually it then goes back to it's normal position. Apparently mine won't go back to it's normal point, which is maybe causing the pain?

They also are hesitating in giving me a stroid injection in the joint incase the problem is degenerative and if so the steroid will speed up the erosion.

I was wondering if anyone had anything similar? If so, what have been the steps in sorting it out, or any other pain management that could be useful. I've tried hot/cold compress which works sure but only when the compress is against my jaw...so it's very temporary pain relief and I can't strap a hot water bottle to my face for ages (although I have when the pain has been awful).

Sorry for the long rant I wanted to give as much information as possible, hopefully this may be helpful to someone as well.

Hope everyone is staying safe and thanks for listening!

Comments

  • Chris_R
    Chris_R Moderator Posts: 814
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    Hi Ophelia

    Welcome to the forum you have been through a lot and still are by the sound of it,sorry you are still in pain, you are not ranting it is good to hear exactly what is happening to you so that others can comment and help you get through your journey of pain.

    Everyone on the forum understands about pain as we all have some form of Arthritis we are also very friendly and sympathetic people who will help you feel very welcome. The most popular forums are Living with Arthritis and Chit Chat.

    All the best Christine

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