RA in jaw

Evening all,

I am really struggling with my jaw lately and not sure how to move forward. I wondered if anyone had any advice?

I was under care of maxillofacial specialist (due to the extent of the destruction the RA has caused) but discharged as I declined surgery on account of being in the middle of my degree. I am being referred back but in the mean time, I am not coping; can barely open my mouth and my face is swollen. Naproxen and co-cocodamol isn't touching the pain.

I could cry and I don't 'do' crying very often!

27 Replies

  • Ask your dentist to refer you back to facial maxillary x

  • Thank you. I have been re-referred; I am just waiting for an appointment. I have recently started a new job and taking time off is really difficult, especially as I work 22 miles away from home but I think I shall have to bite the bullet and just ask for time off.

  • Yes ps it's very very distracting. I got a mouth splint made by the dental professor that you can put in on that side to help your jaw at night. I found it hard to manage but others find them very helpful xx good luck when you see them and hope they can help you quickly xx

  • I had a night guard made by my dentist. I found it helped with the pain some. Also, I was grinding my teeth In the night and messing up my teeth. That stopped my tea from wearing down. I also massage my jaw muscles I find that helps some also

  • Yes, jaw massage and ice packs are providing some relief. I'm not sure I'll actually wear a night guard, I am funny about this sort of thing. Dentist didn't sound hopeful that it would make much difference anyway. :(

  • Glad the ice packs and massage helps a bit. I do hope you find more relief!

  • I get it in my jaw also, so painful. I find it the most painful part of RD. Luckily mine comes & goes,it seems to be the more stressed I am the worse it becomes. I have a mouth guard but I don't really get on with it. As I can't take painkillers I use heat to ease the pain which helps me. Hope you get some relief soon x

  • Yes, I do think that the stress is making me tense my jaw and neck muscles. I am not a heat fan but ice helps. Thank you. x

  • Hi crashdoll

    Has your jaw got like it is purely by RA or have you been clenching or grinding your jaw at night?

    I have had RA symptoms in my jaw a long time ( never to the point of needing it injecting). The pain escalated last Xmas when I couldn't eat. I was under a lot of stress and went to see my dentist under friends advice and he asked about stress and the penny dropped. I started relaxation exercises at bedtime which helped a lot and my gp referred me to a therapist. My dentist referred me to a oral surgeon but I'm still waiting to be seen. I feel for you it's a horrible pain and I found even eating ice cream painful as we use our jaw muscles to swallow. Have you lost weight?

  • I don't think I am clenching or grinding. The scans done by max fax show RA as the most likely cause. My RA has damaged other joints too, so I wasn't surprised it started on the jaw. I have lost weight but I have a stomach condition which has flared up and is the most likely cause of weight loss. I am managing soft foods, hot chocolate for comfort!!

  • Oh bless you it must be hard. How long have you got to go before you finish ŷour degree and can have the surgery?

  • Hi, really sorry to hearing you're suffering with your jaw. I had the same issue, and my jaw felt like it was about to pop out of place which was a bit concerning. As Kikdeelili commented above, stress is a big factor with mine comes. I find that massaging the area and jaw exercises really helped.

  • I am stressed up to my ears at work. I didn't realise it was contributing till now. I suppose I just didn't think!

  • Before my meds kicked in I had this and it is blooming painful. Mine felt as tho it would lock with certain movements. I see an osteopath Nd found her very helpful in reducing inflammation in the neck area which seemed to help immensely x

  • I have a fab osteopath. I will ring and make an appt. Thank you! :)

  • I have suffered major TMJ due to Fibromyalgia. I had a bite plate made by a dentist years ago, and it did help for quite a while. I don't know if it's a possible thing you can try, but it's all I can think of.

  • Thank you. My dentist feels a plate wouldn't help much, the jaw bones are just too damaged. I need to consider a surgical opinion. :(

  • I am a RN and also have RA. IT ALSO AFFECTED my TMJ joints. After conservative therapy the condyle on both sides and the head of the condyle became necrotic. Had Total Custom Joint replacements on both sides. This was in 1995 for the left and in 2001 for the right. I see pain management if any flare ups in muscles of face or pain in joint but very rarely. Best thing I ever did BUT u must choose a maxilla facial surgeon who is highly skilled in this area. I was lucky. Have one rated in top ten of the country. Best of luck

  • Hi Jamie,

    Maxillofacial surgeon is an expert but I would seek a second opinion if I was to go ahead with the jaw replacement. They think it is something I should consider.

    How are you post-op?

  • Hi girl

    Yes Maxillofacial is a specialist. I'm a RN And worked for him. He is world re-knowned as was his partner in TMJ total joint replacements. They do custom joints that are made and casted in titanium to fit UR bone structucture based on MRI AND CT scans. Believe me I would not have done anything quite that dramatic but the blood supply to my TMJ joints were gone and the bones became necrotic ( dead) so there was no choice for me. As of post op my Left side was done in 1999 the right in 2001 , I see them yearly for CT And MRI scans and replacing those joints was the best thing I ever did. I can now deal with my RA AND LUPUS = Rhupus , much better I eat normally , no more migraine headaches, no muscular pain. Because I am a RN I do strongly suggest that you see a SPECIALIST for this. A Dentist can't help TMJ PTs and no insurance company is going to pay for that extensive of a surgery without it being a Maxillofacial MD. I stayed in the hospital 36 hours post op for each , UR diet is soft foods for 2 weeks then as tolerated. Your mouth is NOT wired shut. You walk out just as u walked in but with some facial swelling that goes away with head elevation and ice x 48 hrs. Pain pills for a week and that's it. It's scary I know, but I'm working on my 17 th year since my first one was done and I'd do it again if time went backwards. Keep me posted on your progress. I went thru a year of conservative treatment with the splint and marcaine injections directly into the joint ( no fun) before the blood supply just quit to those joints due to all the damage. Will be thinking of u.

  • Hi crashdoll,

    Sorry to hear you are struggling with this jaw pain. Please give our helpline team a call on 0800 298 7650 and hopefully they can give you some support with this.

    Best wishes,

    Ruth Grosart

    NRAS Digital Media Coordinator & HU Admin

  • Thank you. I will try to sneak some quiet time at work and have a vent to someone who understands. I don't think my family realise how much this jaw pain is impacting my life.

  • Thank you. I will try to sneak some quiet time at work and have a vent to someone who understands. I don't think my family realise how much this jaw pain is impacting my life.

  • I too have had serious problems with my left jaw. This caused me to have problems with my teeth too. I have fillings in the back of my mouth both top and bottom. The fillings started falling out every few months, still are. I had a really bad experience in the early summer with lock jaw. I could only eat liquids through a straw and as I said my fillings kept falling out. I got my dentist to see me although she couldn't get into my mouth to refill the filling that had fallen out. She sent a letter to a dental surgeon to see me asap to see what could be done to help me. In the mean time my Rheumy nurse gave me a steroid injection to see if it would help with the lock jaw....it eventeually did help.

    I was fast forwarded to see the dental surgeon who had ex-rays done. He showed me the ex-rays and to be honest all I could see was one big blur where my jaw bone should have been. He told me that I had RD on both sides of my jaw, although I only have pain on the left side. He said there was nothing he could do for me until it got worse and when that happened he would send me to London (I live in Ireland) to get a jaw replacment! I said I wasn't too keen on the thought of that but he reassured me that it was done all the time and was very successful..... I remain to be convinced!!

    I have to say that my RD is responding to Abatacepth injections and I have my life back in a way I haven't had in the past 4 years. I do daily have the odd twing, just to remind me that it hasn't gone away, but my quality of life is beyond belief at the minute.

    I do hope you gt the help you so badly need.

  • I'm sorry you've had a tough time too. :( Jaw replacement is very likely to be in the cards for me too. My RA is quite settled, so I hope so further bone damage is being done but what's already been done is pretty bad. I am considering asking for a steroid jab just to get me over this hump. Thank you for replying.

  • My dentist showed me how to unlock my jaw, and how to move it so it minimised the pain. It made a big difference.

  • Unfortunately my dentist cannot offer any advice. The jaw bones are too damaged too unlocked but thank you for replying anyway.

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