Experiences of TMJ ?: I'm being passed from Doctors to... - NRAS

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Experiences of TMJ ?

I'm being passed from Doctors to Dentists at the moment. The Docs are saying I have an infection in a tooth because of pain around left jaw and blood work. The Dentists are saying there is no infection, I have Temporalmandibular Joint Dysfunction Syndrome. While they are arguing about it, I keep having to pay for dental consults and prescriptions and the pain isn't getting any better. The up side is I have lost over half a stone because I can't eat properly the down side is that while there is a question of infection I can't take the Enbrel. Has anyone had experience of TMJ and does anyone know how, or whether it is distinguishable from active RA in the joint? I'm used to pain but this is unremitting and I'm dreaming of being able to eat anything with a bit of a crunch! Any info appreciated, thanks.

4 Replies

My rheumatologist thinks I have TMJ too. I wear a mouth guard at night because I grind my teeth at night. Apparently you need an MRI to tell if you have inflammation in your jaw. You could ask your GP to refer you to the maxillofacial specialist at the hospital. Have a look at the nhs website for tmd. X

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I had pain in my jaw for several weeks a few months ago, I too was referred to my dentist from the GP. Dentist found no problem, so I was in no man's land. I used to get it lying down at bedtime on my left side. I used a hot water bottle, and kept off chewy food. I also was told to stifle yawns. Eventually it just went away. So frustrating for you. I know it was TMJ, I mean it is a joint, just like all the others... but there seemed to be no help forthcoming...I feel for you. Frustrating to be passed from dentist to doctor. Good luck!

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No advice, I'm afraid.

I have trouble with my jaw, but mine only last, so far, for a day or two and I go semi liquid at that point...porridge, soggy cereals, soups, protein shakes, safe in tbe knowledge it's only temporary and who cares that my false teeth don't fit in my cakehole at that point.

I will say, however, both my GP and rheumy came around to the idea that my jaw does get affected.

My condolences to all three of you and hope you get a resolution!


I don't have RA, I have ankylosing spondylitis but yes, I have experience pretty similar to yours. The issue started about 4 or 5 years ago: I thought I had a tooth that needed filling. I'd get a very severe pain from nowhere and it could last anywhere from 10 minutes to a week. Eventually went to the dentist, he said I was clenching my teeth and I needed to "stop being stressed". Hmm, easier said than done. I didn't think I was particularly stressed and as I was clenching while asleep how was I meant to stop that?

He was not keen to give me a guard as in his opinion it was better to treat the root of the problem (which he thought was stress). So I struggled on and at every appointment would mention it was still hurting and he would say you are still clenching, you've cracked all the enamel on your teeth or could be TMJ. Asked rheumy is this AS related? She said no, but I've found a lot of AS sufferers also have TMJ or jaw problems.

When he left the practice I got a new dentist and ended up visiting him in such severe pain I could barely open my mouth. He felt I should have a guard - it was a job to get the impressions done. At one point he just put his hands in my mouth so I could rest my top jaw on him as I was in agony.

The guard did help considerably but after a year or so, I started to get pain again. By this time I was on Cimzia and so my immune system was depressed. Ended up going to the dentist as an emergency: on the Wednesday I'd had the worst pain I have ever felt all across the right side of my face, went to the GP on the Thursday to be told it was textbook trigeminal neuralgia (told them my tooth has been x-rayed countless times, dentist says my teeth are fine), put on amitryptiline. Friday noticed my very back tooth on the bottom right was very tender, Saturday, notice my gum has become very "baggy", Sunday wake up to a massive lump on my jawbone. So straight to dentist on Monday morning.

More x-rays - nothing shows. But evidently something was going on as I had a massive lump on my jaw, so given antibiotics - obviously can't take my cimzia. 2 lots of antibiotics later, syringing corsodyl into the pocket in my gum for 2 weeks (this was all over Christmas, so very jolly), deep cleans x 2 from dentist, I'm still in pain and still nothing is showing up on my x-rays. I just told them to take the tooth out. I'd been off the cimzia for 6 weeks and said that while this went on I couldn't take the meds for my AS and I felt sacrificing the tooth was worth it, thank you.

Tooth out - it was cracked from top to tip of root on 2 sides, the inside was very badly infected. Because of where the cracks were they didn't show up on x-ray. So, if your bloods give reason to believe there is an infection in the tooth, I wouldn't write it off despite what the dentist says and if you are not getting anywhere with your dentist, I'd definitely try to get referred to the dental hospital instead. It is a tricky area where you seem to fall between dentist and GP and it's no fun is it?!


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