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07-05-2017, 09:58 AM   #1
Cat-a-Tonic
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Tmj?

I think I have TMJ. I had these symptoms maybe 10 or 12 years ago - lots of jaw pain, clicking in the jaw, pain while chewing, and at times my jaw would lock up and I wouldn't be able to open nor close it for a little while. Then it went away on its own and I forgot all about it, until now.

So now it's back, same symptoms although it hasn't locked yet. Lots of pain, especially while chewing/eating. It's only in my left jaw, which I seem to recall was the case from 10ish years ago too. Anybody else have TMJ? The internet is not super helpful, in my googling it told me to take tylenol and try not to clench my jaw, but it sounds like there's no actual treatment for it besides just dealing with it and hoping that it goes away again. Anybody else have any advice for me?
07-05-2017, 10:33 AM   #2
ronroush7
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Maybe you should go to a dentist. I hope it gets better soon.
07-05-2017, 11:50 AM   #3
Jabee
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Hi Cat. I've had TMJ for years. You do need to see a dentist or preferably an oral surgeon. He or she will fit you with nightguards which will prevent your teeth from touching since you are grinding your teeth and/or clenching while you're sleeping. I had an MRI to confirm it, and my first nightguards were fitted then. There are also some physical therapists who work with TMJ sufferers, as well as exercises you can do which might help.

Last edited by Jabee; 07-05-2017 at 12:08 PM.
07-05-2017, 12:03 PM   #4
Cat-a-Tonic
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Thanks Jabee, that's helpful! I'm due for a dental cleaning anyway (have been putting that off because of the jaw pain) so I'll make sure to talk to my dentist about it.
07-05-2017, 02:21 PM   #5
Maya142
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TMJ is just the name of the joint - temporomandibular joint. You can have TMJ dysfunction (pain) or TMJ arthritis (inflammation). I would recommend seeing your dentist first. They can do x-rays to see if there is any sign of arthritis and suggest next steps.

It could be inflammatory arthritis (associated with Crohn's or SpA or AS) OR just osteoarthritis - wear and tear. Depending on the kind of arthritis, the treatment will differ.

My daughter has TMJ involvement (arthritis) as part of her Ankylosing Spondylitis. Her symptoms were pain and being unable to open her mouth wide. Chewing hurt.

We started out with a night-guard to see if it helped the pain. It did, for a while, but not for long. Then we saw a jaw specialist and he pointed out erosions on her x-ray - indicative of inflammatory arthritis. We did an MRI which showed active inflammation. Then eventually we did steroid injections into the joint.

For inflammatory arthritis, the other thing that can be done is to switch immunomodulators/biologics or increase the dose. The goal is to get the arthritis under control as fast as possible, to prevent permanent damage.

For osteoarthritis, they would probably use an NSAID or Tylenol, possibly steroid shots. A night guard and PT are used a lot too and can help a lot.

Jaw specialists are tough to find - most children's hospitals have them since TMJ arthritis is very common with juvenile idiopathic arthritis. It can cause a lot of damage - enough to require a replacement. We know several kids/teenagers who have needed replacements, but obviously that is the worst-case scenario.

The other thing we did was physical therapy - that helped a lot.

Good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
07-05-2017, 02:40 PM   #6
Cat-a-Tonic
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Thanks, Maya! That's interesting - I have arthritis in both hips, and I've gotten a couple of different opinions on it. GP says he thinks it's osteo, and I saw a rheumy who said he thought inflammatory. So maybe it's related in some way to my hip arthritis, and if we can figure out the jaw, then maybe the hips will follow? I swear, none of my health issues are fully diagnosed, ugh. I will ask my dentist to do some x-rays and will figure things out from there. Thanks again!
07-05-2017, 02:47 PM   #7
Maya142
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I would see another rheumatologist to make sure. If it's inflammatory, it's wrong to leave you without treatment, because that will only lead to further damage in your joints.

Depending on the kind of arthritis (rheumatoid, psoriatic, spondyloarthritis) the treatment would be different. Spondyloarthritis in particular can also cause low level gut inflammation and gut symptoms - "subclinical inflammation." It's fairly common in SpA and could explain your GI issues too.

An MRI of your hips or temporomandibular joints would show what kind of arthritis it is, if it is arthritis. That said, if it was inflammatory arthritis, I'd expect other symptoms - morning stiffness, pain that gets better with movement and worse with rest, response to steroids, red, warm or swollen joints etc.

Osteoarthritis is, of course, more common - even in your 30s (I know it's known as "old person arthritis" but it can actually start when you're quite young) and is less serious, though can be extremely painful and miserable.

Either way, it's best to figure out what it is!
07-05-2017, 02:56 PM   #8
Cat-a-Tonic
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I had an MRI about 4 or 5 years ago when I saw that rheumy, and at the time he verbally told me that he didn't see anything on the MRI - but, according to my GP, in his notes after the MRI that rheumy indicated that it looked like inflammatory arthritis. So I really don't know whether to believe him since he told me one thing and wrote another (my GP also saw the results of the MRI and he still thinks osteo). That rheumy was a pretty terrible doctor, he didn't seem to know much of anything and kept trying to refer me back to my GP, so I stopped seeing that rheumy shortly after the MRI and didn't get a referral to see another one. My hips feel pretty good most of the time these days, so because of that and also because of my bad experience, I haven't yet seen another rheumy. I know I should at some point. Another problem is that I've got a bit of doctor burnout (I'm sure that's very common on the forum!) and I've also got my doctor bills all paid off at the moment, and am not in a hurry to rack up any more. So I'm a bit apathetic about seeing another rheumy. I know I should, and I will. Maybe just not right now though.
07-05-2017, 03:13 PM   #9
Maya142
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That's fair - I definitely understand the doctor burnout! It's strange that the rheumatologist would say one thing and write another - but it's possible there were subtle signs of arthritis without enough evidence to make a clear inflammatory arthritis dx.

That said, if your hips get worse or start bothering you a lot then I'd make an appt. as soon as possible. If they're not bothering you now, I wouldn't worry too much.
07-05-2017, 04:20 PM   #10
Cat-a-Tonic
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Yeah, I think that whether it's osteo or inflammatory, whatever I've got is mild enough that it's still barely visible. My GP has done several sets of x-rays and he says he sees evidence of mild osteo arthritis, but it's so mild that it's barely visible is what he says. It's intriguing to me that the rheumy said inflammatory in his notes, but at best I'm taking that with a large grain of salt. I did go through PT for hip arthritis about 5ish years ago and that helped a lot, so whatever type I've got, it's a type that can be helped by PT.

And yeah, after my flare and hospitalization last year, I had met my out of pocket max on my insurance, so from Aug - Dec of last year I was at the doctor a LOT because basically everything was free from that point (as long as it was covered anyway). So I was getting tons of bloodwork, I had an MRE, I got an IUD, I did everything I could since insurance was paying 100% at that point. But I sure got sick of always being at the doctor! And yeah, my hips are not bad at all these days, most days there is no pain. I couldn't even tell you when I last needed to use my cane. Sometimes they'll get a bit achey if I have been resting a lot, but having a walk usually makes them feel better - some low-impact exercise (anything but jogging!) or a hot bath with epsom salt is usually all it takes these days to get my hips to stop aching. Bitter cold weather can sometimes make them ache, but obviously it's summer so I won't have to worry about that for at least a few more months.

On a related note, my jaw feels a lot better than it did yesterday. It was pretty horrible yesterday but has been tolerable today so far.
07-05-2017, 04:29 PM   #11
Maya142
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You can try ice for your jaw, while you're waiting for an appt. with the dentist. You can even make or get special ice packs (kind of like a headband to hold the ice in the right spot) for your jaw. Same with heat.

Other than that, we haven't found anything good for jaw pain. It can be really painful!! PT helped a lot but it takes a while to work and you have to find the right physical therapist. Tylenol is also worth a try!

Also, jaw pain or arthritis can cause headaches, ear pain or neck pain, which we didn't expect at all. We got worried when my daughter started complaining her ears hurt and rushed her to the pediatrician which is why I'm warning you .

The fact that cold makes your hips hurt or that PT helps unfortunately doesn't really tell you which kind of arthritis it is - it could really be either. Swimming and biking are great for any kind of arthritis and as you figured out, high impact stuff like jogging can be tough. I would just hang in there until it flares up again - then I'd try and get it figured out.
07-05-2017, 05:17 PM   #12
Cat-a-Tonic
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I'm always a bit leary of taking tylenol. I had liver issues a few years back which have apparently cleared up on their own, but I try to be gentle to my liver just in case those issues return (I had focal nodular hyperplasia, which I was told were like benign tumors on my liver, and sometimes they come and go due to hormonal changes - I changed my method of birth control and they went away, which my GI said can happen). Tylenol also sometimes upsets my stomach, so I'm not a big fan of taking it. I'd honestly rather just deal with discomfort or pain than take tylenol, in most cases.

Good to know about headaches and ear & neck pain! I actually had a headache yesterday when my jaw pain was at probably its worst so far, and I didn't realize the two could be connected. As for ears, I'm so careful about my ears, particularly my left ear (it's my left jaw that has been painful). 3 years ago I had labyrinthitis which caused horrible vertigo, it lasted for 3 months and it originated in the inner ear in my left ear. So I'm always nervous about that ear in particular! If I had ear pain in that ear, I definitely would freak out. Now I'll know that if I have ear pain, it's likely just another part of my jaw issues, and I'll probably still freak out a little, but not nearly as badly as if I hadn't known that.
07-05-2017, 05:20 PM   #13
Maya142
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Good luck Cat, hope you get in to see the dentist soon . Hang in there!!
07-06-2017, 06:15 PM   #14
chuckmya
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I'm a dental hygienist of 32 years.....probs a visit to the dentist is a good idea....a night guard prob will be recommended to keep you from clenching/grinding @ night. Be aware of your daily wake hour habits.....it's possible you're clenching during the day as well. Warm moist heat when symptoms arise is very helpful also.....20min on 20min off....will help with facial muscle spasms. A chiropractor can also be very helpful with manipulations & exercises to do @ home! Good luck....hope you find some relief!

07-06-2017, 10:35 PM   #15
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I get TMJ pain sometimes. It comes and goes. I was actually just dealing with it last week because I had some dental work done, and ended up having to chew on my right side, instead of the left where I usually chew. Then I ate a bagel, which definitely didn't help matters. I used an ice pack on it for about 20 minutes for a few nights and it has basically cleared up.
Hopefully you find some relief soon
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