Does anyone suffer with this and what strategies do you use to alleviate it? I have been experiencing this pain and stiffness in my jaw recently, to the extent that it is difficult to open my mouth wide enough to eat normally, and to clean my teeth. It is also painful directly under my right ear and the pain goes up into my head and down into my neck. I mentioned it to my dentist at a recent routine appointment and he puts it down to arthritis (he knows I have Lupus) and suggests massage and offered to make me a mouthguard (which I'm not too keen on). He suggests I may be grinding/clenching my teeth in my sleep.
Any suggestions most welcome please!
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Larks0ng
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It is caused by clenching your jaw at night and day. A bite guard, worn at night, will help you train yourself to keep your jaw back & centered, not clenched. After a while you won’t need it anymore.
hi yes I’ve had this for years - recent flare sent me to GP who confirmed it’s TMJ relating to my connective tissue disease (Sjögren’s and scleroderma). For me I don’t think I clench as no scalloped tongue but my jaw is quite unstable/ hypermobile and feels tight and achy all the time. I saw my dentist who says it’s part of the Raynaud’s side of things for me as really painful in cold when ears and nose get Raynaud’s. So my main priority is to keep face and ears warm as possible and I now have a special balaclava which my family gave me for Christmas made of same padded stuff as puffer jackets. It really helps plus I use warm flannel or my USB heated eye mask for my mouth and massage the TMD joints with fingers to ease up the muscles and this really helped. I was given a splint for clenching years ago but chewed through it!
My max fax dental surgeon threw it away and said it was clearly causing me to clench more! I see her again later this month because my dermatologist says it’s all due to scleroderma tightening things now 😬
Thanks so much and glad if I’ve been useful in some small way. I don’t know about you - and think in my case it’s mostly because I need more Levothyroxine as my TSH has wandered up into range which generally means I’m under medicated . But the swings in temperature and general cold are playing havoc with my bones and joints and sleep - everything is seizing up with stiffness including jaw. Hope you feel better soon too. Roll on spring! X
I had this same issue and combined with aching from chewing, a headache at the back of my head and pain on pressing my head back into a cushion or pillow was diagnosed as GCA (Giant Cell Arteritis) and I was put on 40mg of pred which instantly got rid of all the symptoms. A temporal biopsy was inconclusive so I'm now wondering if it was TMJ. I know I clench, mainly during the day though so a clench guard would be no good. As I come down off the steroids I expect it will return if this is the case.
Hi Broseley, Thanks for your reply. I had a potential brush with GCA a few years ago and took a high dose of steroids at the time which seemed to do the trick and I've had no recurrence. (The GP thought it might also be shingles, but it wasn't). But this feels different, and I feel it is probably TMJ. I think this will just come and go and I will just have to deal with it by taking painkillers, using warm compresses, and gentle massage. Thanks for your input.
You were lucky - I have had to take steroids for too long to be able to come off them quickly now, I've been on them for a year and 3 months and still have a way to go - but then I have PMR too.
I still get issues occasionally with my jaw though. Pain towards my right ear and some claudication on chewing. I wish you luck getting yours sorted!
Yes, on the whole I am lucky with my Lupus history (had for 37 years - am now 73). This latest niggle is nothing compared to many of the wonderful, long suffering people (like yourself) on this forum. I wish you all the best, and thanks for replying.
Having Lupus for that long must be a trial! I don't have lupus, my MIL has it, and hubby was thought to have it but they now think it might be connective tissue disorder. All starting (including my PMR/GCA) after the covid jab!
I've been struggling with something like this too -I thought mine was TMJ but I have had one doctor say it's unlikely due to the fact that for me it can affect my eye, glands and ear too (I get gritty/sore eye on the effected side when I have what feels like a bad toothache, and then also can can feel like I have swollen gland on that side. The back of my head also has a really sensitive spot (if I touch it it's sore). This doctor thought I should be tested/treated for trigeminal neuralgia but I have yet to get the NHS to pick up my dentist's referral and it's been over a year! I'm not sure trigeminal neuralgia is right. It comes and goes like any other flare symptom so on days it's bad I take naproxen and that seems to keep it at bay a bit. Hope you find out more -- it's very painful.
Thanks, Shannon, for your reply. Like you, I think I will just have to deal with this on an ad hoc basis. I did have a swollen gland like symptom on one occasion and a feeling of really bad toothache. Took painkillers overnight and by the next morning it had lessened - was ready to make a dental appointment but didn't on that occasion. All the best with your referral, fingers crossed.
I am a former qualified Dental Nurse who did the job for many years before becoming a Paramedic (now retired).
I have suffered with TMJ, so as well as having the experience of regularly seeing patients consulting the Dentists I worked with, I know from first hand suffering how painful it is.
Your Dentist is correct in saying a Bite Raising Appliance could help to give you some relief; It fits over your lower teeth and helps to keep your teeth slightly apart which takes the pressure of the TMJ. It is made to measure, ie impression taken by Dentist which gets sent to a Dental Laboratory to be specially made; Wear it when sleeping/resting/relaxing but not continually.
Avoid overstretching the joint, (eg don’t bite into an apple or a big, thick crusty roll), cut food up into smaller pieces to eat. Give the joint chance to rest as you would a sprained ankle or sore shoulder.
Paracetamol, anti inflammatory painkillers, (prescribed or over the counter) plus muscle relaxants, eg Amitriptyline or Diazepam might help. Sometimes TMJ can settle on its own & never return, occasionally Dentist will refer a patient to Oral Surgery when all other options have been unsuccessful.
A hot water bottle may be comforting and some patients find relief from Acupuncture.
All the best & hopefully you will have some pain free days ahead 🙂
Thank you Turquoise (my favourite colour), for some very reassuring, comprehensive advice.
Would you just recommend wearing the Bite Raising Appliance during bouts of TMJ overnight (I don't have it all the time, but it is happening more frequently). Or is it to be regarded as a preventative measure so to be worn even when not in pain?
From my time working as a Dental Nurse, the Dental Surgeons I worked with advised patients to wear their Bite Raising Appliance only when the TMJ was painful & troublesome.
As far as I’m aware, there is no advantage to wearing it as a preventative measure as your natural ‘bite’ is slightly adjusted whilst wearing it, so without it your teeth will return to their natural alignment.
If TMJ problems return it won’t be because you haven’t been constantly wearing your Bite Raising Appliance. If it settles after wearing the B.R. A for a while, stop using it and see how you get on.
Your Dentist is the best medical professional to speak to about TMJ as they are experts in anything mouth & jaw related.
Best wishes 🙂
Ps …. Turquoise is my absolute favourite colour too 🧚♂️👗🩱🩴🌊
Hi Larks0ng, about 3 years ago I bit into an apple and have never been the same. Excruciating pain in both TMJs, locking, cracking/grinding sounds, unable to open mouth very wide. Plus headaches, ear pain, neck pain, glandular pain. Pain settled slightly after a week (of not eating very much) and I have had chronic pain in both TMJs ever since.
I went for an xray and they couldn’t fit the jaw into the photo, and then they said, ‘Did you know you have an abnormal jaw?’ They sent me for a moving MRI, where they took recurrent photos of each TMJ while I slowly opened and closed my mouth.
The upshot: I have congenital abnormalities in my TMJs, plus arthritis and active inflammation likely brought on by lupus. One TMJ is dislocating every time I open my mouth; the other appears to be permanently dislocated. The bone marrow is completely absent from both TMJs, meaning the bones cannot repair themselves. It is only a matter of time until they collapse completely.
Initially I tried massage and painkillers which did nothing. I wore a splint made by my dentist but the pain gradually worsened over the next couple of years. I avoided difficult foods and cut up things like apples and corn-on-the-cob. Chewy foods like toffee, some dried fruit and soft pork crackling were terrible.
Last year I saw a surgeon who had jaw specialists in his clinic, and I saw a jaw physio and got a custom splint fitted - this time it was more than a bite-raising appliance, it had spiky bits for the back teeth to lock them in place and stop me grinding at night. I have been wearing this new splint nightly for about 6 months, and got specialist physio for 3 months, Both gave me some relief from symptoms, and I can open my mouth wider now, but the pain is persisting, and I am continuing to wear the splint every night and do physio exercises nightly.
I went back to the surgeon at the end of 2022 and we talked more invasive procedures. There is only so much physio and splint-wearing can do; nothing is going to stop the bones from disintegrating. The surgeon said my jaw muscles are not big enough to consider botox, so the next step is arthroscopy (cutting through scar tissue and injecting steroids). I will go back when the pain is worse again and get that done. That’s a one-off procedure; after that, it’s jaw replacement surgery.
I have full confidence in my surgeon and I know the complete surgery is only a matter of time, due to the complexity of my case. So I’m just monitoring my symptoms for now. I recommend seeing the maxillo facial specialists, especially if your pain persists or you are concerned. If I had never had the xray, I never would have known anything was amiss.
Hi MFb, my goodness, my 'problem' pales into insignificance...........all I can say is I wish you well with the arthroscopy and steroid injections when you feel it is time to have that done. Please keep us posted. Thank you for sharing your experience with me. All the very best, 🙏
No worries! And please don’t be afraid to pursue treatment or even second opinions for yourself either. TMJ pain is terrible and I truly hope you find some relief. 🌻
Hi Morlise, Thanks for your reply. I have been taking Glucosamine & Chondroiton for many years, mainly for joint pains (in legs) and swear by it. Stopped it for a short time to see what happened, and soon went back on it. Sadly it doesn't seem to be doing anything for my jaw though! I've got a dental appointment tomorrow morning with a view to getting a mouthguard made to wear overnight.
Your dentist should refer you to the nearest dental hospital ! You could try massage on the jaw and anti inflammatory gel on your jaw as well As pain killers ! Eg (syndol) from the chemist! You could also check out the Amazon books on trigger point therapy! It has helped me! Best wishes ☺️
Thank you for your reply, Yogasan. My dentist had a mouthguard/nightguard made for me, which has helped enormously. After my initial reluctance to wear it, I quickly got used to it and it has reduced the problem almost entirely. I wish you well in your endeavours to alleviate your dilemma.
Following as I've just been diagnosed with this myself. Luckily, it seems only the left hand side is affected. I'm definitely not a 'grinder' and not really a clencher either. I also have hEDS, Sjogren's & MCTD so think that may have contributed to it in my case. It suddenly 'cracked' & 'popped' on Sunday while I was eating something and carried on everytime I ate/drank/yawned etc. Pain radiating around my jaw & ear, headache & Could feel it trying to dislocate. Saw the Doc Thursday and she confirmed TMJ. The popping has stopped today but so very stiff and sore now and can't open my mouth as wide. GP has just basically said if it dislocates then to get my butt up to A&E but hasn't really said anything else aside from that. Bit concerned about wearing a mouth guard as obviously with the Sjogren's I struggle massively with my mouth as it is. Hopefully it will settle down now that the popping has stopped but will wait and see. A friend with lupus also has it and she has had Botox to help. She said it hurt like hell but she did get some relief so I'm just pointing that out as it may help someone.
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I'm not sure trigeminal neuralgia is right. It comes and goes like any other flare symptom so on days it's bad I take naproxen and that seems to keep it at bay a bit. Hope you find out more -- it's very painful.
Jaw and teeth pain
ORAL THRUSH!!
Still non the wiser 
Gastrointestinal problems - Diagnosis & Causative Given = Connective Tissue Disorder
