Temporomandibular Joint Disorder - is anyone else affected?

[Kati66]

Hi everyone

I just wondered if anyone else has problems with their jaw? Mine began a year before I was diagnosed with RA and it can be so painful!!

Got cramp in my right side jaw last night and it’s set it off again 🙄🙄🙄

XXX

[Madmusiclover]

Sadly I have this badly and it was the flag that got me referred to rheumatology. Talk to your dentist. First line of attack is a mouth guard at night. Didn’t work for me. Second is Botox in cheek muscle. Not available on nhs but I get it done privately periodically and it helps. I’ve seen maxillofacial several times and had MRI on jaw hinge, but nhs can’t offer me anything.

[Kati66 in reply to Madmusiclover]

Thats sad that the NHS won’t do the Botox into your jaw 😞😞😞. If it helps it might be worth me considering too

[Vilamoura]

I have had this for many years before RA caused by grinding teeth at night. I have had a mouth guard for the last 3 years and Botox into the muscles through the NHS - referred by my dentist as by grinding I have also caused fractures in my teeth. I have the Botox every 9 months but could have more if needed

[Kati66 in reply to Vilamoura]

The Maxi consultant said because I’m on Amiltryptilene at night, this should stop me grinding my teeth. I’m not aware I’m doing it if I do. Not sure I would want a mouth guard.

[wilbertjellyfish in reply to Kati66]

A while ago I had to have a mouth guard. The thought of it was awful but it was actually fine and definitely helped.

[Neonkittie17]

Yes and for me it tends to be at its worse with dental treatment.

[Kati66 in reply to Neonkittie17]

Agreed! It was my dentist that first picked it up and referred me to the Maxillofacial team. I got cramp in my right side yesterday and it’s so sore today 🙄🙄

[Neonkittie17 in reply to Kati66]

It can be awful I know. I had a tooth extracted 12 days ago and it set it all off jangling and cramping.

[Runrig01]

I have ankylosing spondylitis, but before diagnosis they knew I had an inflammatory issue, but weren’t sure what. I had severe jaw pain, especially when chewing it would go into a severe cramp, and my cheek muscles were tender to touch. My tongue was also painful, had vascular lesions, and would spasm at night. On top of this my temples were tender and I had pulsatile tinnitus in my ears. I live in Kent, but a rheumatologist in Leeds had requested to see me as she was concerned, as a result of a post on a charity forum. She referred me to Oral Medicine, as MaxFax are really only focused on issues requiring surgery. Oral Medicine Drs are trained as both Drs and dentists, but you need to travel to large cities to see them. The OM dr said all my symptoms were due to inflammation of my jaw, and that inflammation was filtering out to nearby structures. He adjusted my dmard medication, and organised for my local team to refer me to a physio who specialised in jaw problems. She showed me how to do massages, and gave me special exercises to do. He also suggested a mouth guard, but said a lot of patients dong get on with them, and they were over £250 via dentists. Thankfully I was able to order direct from a company dentists use, doing my own impression, and got an identical one to what dentist would have done for around £40. I didn’t get on BBC with it, and constantly took it out during the night. Once diagnosed AS, I was transferred back to local rheumatologist to sort biologics. The change in dmard dose did settle things, but a few year later it flared again. This time my dentist referred me to the he Oral Medicine team at Guys I. London, who agreed with Leeds that it was inflammation in the jaw again. By this time I had changed from Azathioprine to MTX., so they adjusted my MTX dose, and arranged a steroid injection of the jaw. Thankfully this all settled it down again. It still spasms when chewing certain foods, but nothing like what I was getting. These days I mainly get inflammation of my tongue, it becomes very red and inflamed, and is agonising to eat at times. Unfortunately I’m on the highest dose of 25mg MTX, so currently waiting to see rheumatologist about possibly adding another dmard as I can’t take nsaids. Sorry for the lengthy response, but I’d definitely push for referral to Oral Medicine rather than MaxFax. You may need to do some research for your nearest one, to provide them with especially if your Trust don’t have one. Good luck 🤗

[GinnyE]

Yes, I've had flare in my jaw, only once or twice in four years but it scared me. Felt I couldn't swallow. It wore off thank goodness, no advice from medics, and I can get the occasional ache still.

[WorkingWifeyNMum]

hello. Yes I had that exact same process of referral. Had problems with my jaw for years before other joint pain - they seem to think that my having children prompted the changes that caused my arthritis tho 🤷‍♀️ thankfully the RA meds I take also help with the pain and problems I had in my jaw.

[Kati66 in reply to WorkingWifeyNMum]

that’s good to hear the meds help with your jaw 👍🏻👍🏻👍🏻 mine began after having an endoscopy, which wasn’t successful as apparently I was fighting them off!!! 😂😂😂.