Jaw problem : A while ago I said about jaw pain... - LUPUS UK

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Jaw problem

LouLamb profile image
LouLamb
β€’24 Replies

A while ago I said about jaw pain when eating . Today I went to the doctors . I have temporomandibular joint disorder . This is why my jaw goes to the left . It explains the pain in my ears. I also grind my teeth and jaw as well so that is not helping the pain either .

I'm gonna make an appointment in August for the dentist to clean my teeth anyway . I am going to ask him if he can make me a gum shield thing . The doctor has told me to get one .

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LouLamb profile image
LouLamb
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24 Replies
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Plumstead15 profile image
Plumstead15

I had that many years ago. It eased up eventually. I was told to avoid yawning and chewing gum and anything chewy.

I used a gum shield for a while too.

Hope the pain eases up soon.

sunshine16 profile image
sunshine16

I think it's quite common with a few of us

my consultant suggested a warm wheat cushion to ease the pain

best wishes🌻🌻🌻

LouLamb profile image
LouLambβ€’ in reply tosunshine16

I just thought I was going mad . I look at my mouth and it goes to left . At least I know I'm not crazy ( well I think ) πŸ˜‚πŸ˜‚

Lupiknits profile image
Lupiknits

I have a gum shield to wear at night. After a few years, it's reduced the wear and tear and made it easier for me to notice when I'm doing it during the day. My dentist has the same problem and suggested massage to help when it's at its worst. Colgate has some massage hints here colgate.com/en/us/oc/oral-h...

Minnskimoo profile image
Minnskimooβ€’ in reply toLupiknits

This looks really helpful.πŸ‘πŸΌπŸ™πŸ»

Going to give these a try!

Minnskimoo profile image
Minnskimoo

I can definitely go with this! 😬

Had a referral for The Leeds Dental Institute to see what can be done before I am finally left with stumps for teeth. πŸ™†πŸΌ

It's a comfort to realise I am not alone with this. I was worried I was totally losing the use of the muscles in my jaw, as eating something that needs 'a good chew' leaves me with the most horrible jaw and face ache! 😩😜

Strangely enough, I've been putting one of those 'release button to activate' hand warmers you get in the wintertime. It does help when sat at home. A little more difficult if eating out(a rare occurrence for me these days) to whip out a snowman covered hand warmer to apply to face! 😁

Good ice breaker mind! Oops, pardon the pun!

Lupiknits profile image
Lupiknitsβ€’ in reply toMinnskimoo

The little handwarmers help if the muscles really spasm and hurt. My dentist ( a young man with wonderful teeth but a tooth grinder, too) says there's a new "foolproof" way to prevent tooth grinding. It involves small electric shocks. I asked him if he'd tried it. He laughed then whispered he'd rather risk tooth stumps.

Minnskimoo profile image
Minnskimooβ€’ in reply toLupiknits

Oh my word! Electric shocks? 😧

No thanks. I would end up with a perm and probably still have stumps for teeth! Already getting old and crusty. Just something else to add!

Thank you for that, made me chuckle!

Treetop33 profile image
Treetop33

Where does this come from, the jaw thing? I raised it with my consultant and he said it had nothing to do with Lupus. I get jaw pain/swelling on my right side, my lower jaw goes a slight bit to the left (just like you said), and before Lupus meds I had problems talking properly even on some days (it felt like I had something in my mouth or that I was speaking in slow motion). Sometimes it combines with ear pain and eye 'stickiness'/slightly unfocused vision. Comes and goes though.

Odd. I'll look up the condition you have to see if there's something to know there.

misty14 profile image
misty14β€’ in reply toTreetop33

Hi treetop

TMJ , the jaw problem is part of lupus because it's a tiny joint that can be inflamed causing pain, stiffness and eating difficulties. Any lupus treatment should help this too as well as a mouth guard as Lou lamb will find. Hope that's helpful and sorry your a sufferer too. X

Treetop33 profile image
Treetop33β€’ in reply tomisty14

Thanks fingers crossed. I wonder why the consultant thought it wasn't connected. Maybe I didn't explain it well enough (disaster of a first consult...)? Or I mixed it up too much with some post-concussive symptoms I have. Sigh.

misty14 profile image
misty14β€’ in reply toTreetop33

Don't blame yourself treetop, consultants can so vary with their attitudes and knowledge!. Hope you got help as it was your first consultation. X

Treetop33 profile image
Treetop33β€’ in reply tomisty14

I can't say it was much help, since I'd already got myself on meds (went for a private consult then much hassling of GPs). But I do hear wildly varying reports, with some people getting referrals to help with symptoms, and others not. Some consultants listening and learning, others not. This one was nice but very rigid and seemed to not be very 'interested' (I mean, I don't want to be interesting, because to be medically 'interesting' in Lupus is to be very ill, very, very ill).

It was a centre of excellence too.

I'm going to try a chiropractor next for the head stuff, since the docs won't help. More cost!

Anyway, thanks for the clarification - very useful information. I guess we have to be our own doctors to a large degree...

misty14 profile image
misty14β€’ in reply toTreetop33

I' m sorry about that treetop but would have been difficult to do bloods as you were already on meds!.they don't always like it if you've seen someone privately!. Your spot on about us having to fight and be our own doctors sometimes which is why this forum is so helpful. Good luck with the chiropractor and keep posting. X

Treetop33 profile image
Treetop33β€’ in reply tomisty14

Yes true about the private sector. I don't like it either but it was a bit of an emergency as the referral had been messed up. I was by that time 4 months into a process of being gradually hobbled and crippled by my joints, so needs must.

Hard to know what to expect really, right? And it's early days yet. They'll do the basics (I'd already had bloods done and they did a repeat this time, though not sure for what - they took a lot...so not so bad!).

Docs do like to tell you how much worse off others are compared to you, to circumvent any complaining or demands, which compounds people's tendency to downplay or ignore symptoms.

As you say, thank goodness for the internet (my doc really doesn't like the internet...must have told me that about 5 times ho ho :))!

misty14 profile image
misty14β€’ in reply toTreetop33

Maybe Treetop, the private doctor you saw will transfer you to his NHS list. Some do do this!. Was this one easier to talk to and what meds did he put you on. Do hope your better soon. We have to do whateverit takes to be better. It would be better to have a more open minded Rheumy specially if your bloods are not clear cut!. X

Treetop33 profile image
Treetop33β€’ in reply tomisty14

I always think it's good having someone you get on with in your own health issues - I liked the London Bridge one because he did mention psychosocial issues, and seemed to have a more holistic approach. It matters how you are treated.

I suppose fortunately my bloods are entirely clear and only point to one thing, so unlike some there's no painful struggle to get a diagnosis. So while the Guys person got a bit bogged down in the fact I don't have a rash, it is clearly Lupus and nothing else.

And I'm on the standard first line meds so no argument there either. It's more about understand when, why and how to control some of the diverse symptoms, like the jaw, ear, head and eye thing (and whether I can get help for that). And what I can consider is a Lupus symptom and what isn't. And why I only became obviously symptomatic (joints) at 50, two months after getting serious concussion. Can't get anyone to reflect on that one!

Hey ho. I should print off some of the stuff on here and take it in. Clearly I need to be more assertive and have an argument.

Thank you for all your replies. Very much appreciated x

misty14 profile image
misty14β€’ in reply toTreetop33

Hi treetop, I completely agree with you . Also if you can stay with the London Bridge clinic as they have good lupus doctors and understand all its quirks specially as your bloods are clear!. I would have thought the doctors would have said lupus was triggeredbecause of your concussion which was a big trauma on your body!. Stress of any kind can trigger the illness. It's been great chatting and keep us posted how you get on with the Hydroxy!. That's usually first treatment!. X

Treetop33 profile image
Treetop33β€’ in reply tomisty14

Yup hydroxy it is plus Pred taper (a slower taper than I would want - really don't like the steroids...I mean it's 3am and am I sleeping? No!).

No side effects yet from hydroxy, touch wood, though it did feel a bit rough on the guts in the first week (and I'm on the Zentiva brand).

Apparently there was a study done on sports concussions which found that there could be problems with the blood/brain barrier which led to antibodies being produced. But only one. Stress seems likely, and, of course, the problem with trying to pinpoint a trigger is that we ignore problems because they are so incremental. And as I said to the rheumy, I've got a young child and you tend to ignore your own health until it gets critical in some way. Recent or long-term, who knows?

Good idea to stay with London Bridge. They do seem to have more complicated understanding. And don't make you feel like a fool, either. x

misty14 profile image
misty14β€’ in reply toTreetop33

Hi treetop, steroids are a wonder drug but come with worryingside effects. I take them daily on a lower dose so luckily not affected by insomnia!. Hope they're helping you specially as you have your hands full!. Good luck this week with the heat!. X

Treetop33 profile image
Treetop33β€’ in reply tomisty14

Likewise x

misty14 profile image
misty14

Hi loulamb

Sorry you have been diagnosed with TMJ. Hopefully the mouth guard will help and also the Hydroxy will too. Hope your still taking it and driving going well. X

I'm sorry you suffer from TMD, I have had it for years on & off. Stress doesn't help. Have you read what the NHS says?

nhs.uk/conditions/temporoma...

I wore a bite guard for a few years & that helped a lot.

I don't have Lupus. Good luck everyone

Minnskimoo profile image
Minnskimooβ€’ in reply to

A really helpful link for me as I have been stressed on and off since developing an array of debilitating symptoms rashes and suspected TIA. This is just another add on. Joy!

Thank you old motherhubbard. πŸ‘πŸ»

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