Since diagnosis of PMR in 2017 I have regularly experienced jaw and temple pain which has caused me to worry about the possibility of the onset of GCA, especially as I taper down in steroid dose.
This follows my disappointing rheumatologist appointment in May when I was told I probably never had PMR back in 2017 and was referred to Maxillofacial for a consultation . And yesterday I made a long trip to Eastbourne Hospital in mist and rain for that appointment.
Well blow me down with a feather…. Evidently I don’t open my mouth straight!!! The popping sound I hear when I open wide is not supposed to happen, and my lower jaw is not supposed to move slightly to the right. I can’t say I had ever noticed. I was aware of clenching my teeth and grinding them at night but now I find it’s the opening wide and to the left which has stressed the joint and causing the pain.
Years of worry and pain have been resolved in a quick visit to the right consultant and an x-ray, and I must review my report about the Rheumatologist who clearly saw what I was not seeing and sent me there.
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Zebedee44
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I have been given an exercise to do twice daily to start with building up to any time I am relaxing, then a review in three months. It is a relief to know the cause, but I’m not allowed to sing, shout, eat crusty bread or apples unless cut up, nibble my nails. The last will be the hardest because my nails are so poor and frequently break.
I am always in awe of the advice that health professionals can give us - when we eventually access it! I always cut up my apples! 🍎 ("other fruits are available")
Maybe MrsNails can give you advice for your nails? I believe Jojoba oil is good.
My nails are damaged by chronic Stills activity, I use a vitamin oil nightly on them and wear light cotton gloves during housework etc to protect them as once the breaking and flaking starts I’m a biter and then they get infected. I should add I also have Dupuytrens contracture which seems to have affected certain finger nails.
A few years ago I had some jaw creaking. I purchased an over the counter bite block to use during sleep.it was relatively inexpensive and worked a charm. Apparently I don’t clench at night any more. Probably because retired and much less stress!
Just exercising with the tongue against the soft palate while opening the mouth, and no crusty bread or apples. I asked the dentist last time I saw him about TMJ and he made no comment, but I have found myself grinding my teeth at night and quite often have a tight jaw. I know I was stressing about the pain and clearly that was making it worse.
I had very good treatment at the Eastman Dental hospital on the NHS about 14-16 years ago for similar problems following a non-eventful trip to the dentist. Couldn't quite close my jaw that last cm afterwards and felt like I was pulling against elastic bands to try and shut it. Also weird feeling across my face Treatment included some acupuncture, being shown how to put my thumb/finger into mouth and massage a muscle at rear near jaw joint that was very sore and seemingly in spasm. I also had a jaw guard for nightime use.
It took a long while to get back to normal and I never quite believed I would. But I did. Good luck 🍀
In March 2020 I had a GP appointment because of head neck and face pain which at times is unbearable. Told all in head (excuse pun) and go away. I had previously been told I had arthritis of the face! There followed 2 years of everything’s all in the head and no help. In the end I asked for referral to ENT was refused so went private.
Saw Consultant in January 2023 who immediately diagnosed TMJ and referred me to Maxofacial which is where I am at today no appointments yet available at least next year I am told. At least no GP is blaming my type 2 Diabetes as everything else appears to be caused by this!
I sometimes think this is bordering on negligence.
I thought the Rheumatologist was giving me the brush off when he referred me to Maxillofacial, saying he didn’t think I ever had PMR. I also expected to wait for ages but I was lucky to be offered a short notice appointment at Eastbourne Hospital quite a long way from home and thought it could be a good day out, stopping at a few shops I never get to. That was a mistake, the weather was grim and the traffic was awful, the hospital computer was down and there was no cafe. I was exhausted by the time I left the hospital but at least I have a result and can try and make things better for myself and moreover stop worrying about having extra cranial GCA.
I'd be inclined to write a letter of complaint to your GP surgery. Refused a referral? How does he know exactly what is going on. Happy that you now have a name for it and at least you know you'll be seeing the right people. Good luck
I suffered with varying degrees of jaw pain one side only for years before PMR. My dentist said it was because of grinding teeth and made me a night guard, but it severely interfered with my sleep so managed without it. Then a couple of years ago, before PMR diagnosis but with all the symptoms, I had one incident of sudden and extreme pain in the same side of my face as if I’d been shot. After joining this site after my PMR diagnosis and learning of both PMR and GCA for the first time, I mentioned it again to my dentist who immediately referred me to the nearest max fax specialist. After an MRI they similarly proclaimed it was weak jaw muscles and teeth grinding that caused the clicking I’ve had all my life and the pain and prescribed exercises and night guard.
From the referral by the dentist to results of the MRI it was all done in about 6 weeks. I was blown away by the speed of it all, particularly impressive with post-COVID backlogs, NHS really does come through - sometimes!
Interesting, I have suffered with what was put down to trigeminal neuralgia for most of my adult life and had various approaches to the left sided face pain, including attending a pain clinic and removal of a turbinette inside my nose. I vaguely recollect a dentist telling me I had a dislocated jaw many many years ago and did at one stage wear a mouth guard but that has not been prescribed this time, just the exercises.
Referral to max fax has been about three months, my ENT appointment will be 48 weeks, so I guess the NHS is, like the curates egg, good in parts.
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