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tmj disorder pls calm me down!!!

(27 Posts)
2016Hopeful Thu 18-Feb-16 11:20:06

I wrote another thread about my clicky jaw earlier and the consultant told me I had the above due to my jaw cartilage disk being displaced (with reduction). He said it should resolve by itself if I eat soft food, use heat packs and don't open mouth too much but if not he will scan it in 3 months.

That was 3 weeks ago and my jaw seems better in that it's not clicking and locking anymore. But it is either sore or really itchy by the evening and my ears feel blocked. Sometimes it feels like there is liquid in there which makes a crackling noise but not just when moving all the time. Also, I feel like my jaw still feels a bit stiff but he said not to open too far or move side to side so I'm not.

However, the more I google the more worried I get. OK, I know I shouldn't but I can't help it. Now I am living in fear of it displacing further and never getting better.

I am really anxious and instead of feeling positive about it getting better I am living in fear or it getting worse!!! Am I being irrational? I just feel like it should feel normal by now rather than still sore and inflamed. Living in fear of it locking!! Have had to get stomach liner tablets from doc as still taking ibuprofen. I have lost nearly a stone since it started due to just not enjoying eating anymore, more of a necessity than a pleasure.

2016Hopeful Thu 18-Feb-16 11:22:37

Thank you to the kind people that commented on my last thread.

Sherbetdip1 Mon 22-Feb-16 09:55:07

hi hopeful - about two years I had a long battle with my dentist about excruciating tooth/jaw/face pain and he was convinced I had an impacted wisdom tooth that needed to come out. He wouldn't do it and referred me to the local hospital and warned me for a long wait. Long story short I couldn't wait - was literally in agony - and ended up paying to see a private dental consultant who told me I actually had tmj/bruxism.... He told me to take ibroprofen religiously for at least four weeks to completely reduce an swelling/inflammation and referred me to a chiropractor. I cannot tell you how amazing she was! She did specialise in the jaw area and did lots of work on my jaw/neck/back and also gave me some great tips/exercises to do myself. I continued to see her for about 6 months but the initial improvement was within two weeks. Maybe worth a try? If you are in the Midlands i can give you the ladies details x

2016Hopeful Mon 22-Feb-16 11:12:57

Thanks Sherbetdip - am not in the Midlands unfortunately. Glad you managed to sort out your problems. Am considering seeing a private dentist locally that specialises in it as have another 3 months to see hospital consultant. I also don't have much faith in the person I saw at the hospital and left feeling worse than when I arrived. I just feel rubbish not knowing why it is like this. Consultant at hospital said it is usually whiplash??? Well i have had had not accidents or falls at all so don't know where he got that from. Then again if I said I ground my teeth he would have said it was that I think. Am hoping it is recovering but not sure.

Did you cartilage disc move out of place due to the bruxism?

charliedontsurf Mon 22-Feb-16 11:21:36

I have tmj, a couple of years ago I was eating some peanuts and my jaw dislocated sad I had a few appointments at the hospital and the dentist decided I needed a wisdom tooth out because it was affecting my bite. Once removed, my tmj has been much better, occasionally feels a bit stiff but doesn't click or pop anymore.

If you're waiting for your appointment, in the meantime Google tmj exercises and you will find info on jaw exercises you can perform which help relieve the aching. The dentist may recommend a mouth guard if you have bruxism, my dentist told me I could buy a regular one from a sports shop instead of getting one made.

It will get better so try not to worry. You could always see a private dentist in the meantime but if you wait for the hospital they will probably give you the same information.

charliedontsurf Mon 22-Feb-16 11:24:06

Sorry should also say - have you been talking prescription ibruprofen? I had some prescribed that were much stronger than regular ones. I can't remember what they're called but they were strong! They also gave me co-drydamol. Good luck flowers

2016Hopeful Mon 22-Feb-16 11:28:26

Thanks Charlie. That sounds awful and am glad you resolved the problem! When you say dislocated do you mean the lower jaw actually came out of socket or the disk completely displaced?

I am a bit worried about exercises as the consultant said not to do any and I asked him specifically. Then again I am uncertain about what the consultant said anyway!!!

I think my main fear is that the disk has completely displaced as my jaw feels stiff but then again I am working on not opening it too much as per instructions so could be due to that!!

2016Hopeful Mon 22-Feb-16 11:30:51

Charlie I am just having normal ibuprofen with ibuprofen plus in the evening! It is not so much painful as uncomfortably itchy/sore and mainly in the evening. But am taking the ibuprofen as I feel it must be inflamed to feel so strange.

charliedontsurf Mon 22-Feb-16 11:38:27

Just had a quick Google - the ibruprofen I had is called naproxen! Good stuff. Maybe if you go to your GP and tell them you're in pain they will prescribe you some.

My joint just popped out but it did go back in. Was pretty gross grin it had been popping for ages though so it was my fault for ignoring it!

Not sure why they would tell you not to do jaw exercises but I guess they know what they're on about. My dentist said that after my tooth came out, if it still wasn't fixed they could 'flush the joint through'. Maybe that could be an option if it doesn't resolve itself? I'm sorry it's hurting, I know the pain well!

2016Hopeful Mon 22-Feb-16 11:48:33

The weird thing is it hardly hurts in the day but by the evening it feels really strange almost like something is crawling in there and itchy and sore at the same time. I was hoping it was a sign of healing!

2016Hopeful Mon 22-Feb-16 11:49:55

Not sure they will give me naproxen as its not hurting that much really. I am just paranoid about the whole thing, google is not my friend at the moment!!!

charliedontsurf Mon 22-Feb-16 12:15:09

Ah OK. I'm not sure about the itching cos mine didn't itch! Try not to worry, it is a bit scary but it's fixable and it'll be ok soon.

ZestyDragon Mon 22-Feb-16 12:53:27

I was diagnosed 3 weeks ago with TMJ. I have suffered for years with earaches/infections, blocked ears, itching in the eardrum, headaches etc. I have been to the ENT at the local hospital and am on further waiting lists with no idea of what was causing it.

My DH finally decided enough was enough and suggested we pay privately for an ENT consultant. I had my appointment including a hearing test and yes I have hearing loss but the pain is down to TMJ issues. He strongly advised the following:

1. Look up TMJ physio on youtube and do the exercises *,
2. Learn to relax - I don't grind my teeth but I do grit them and this is my problem. I am trying meditation,
3. When I have a flare up take anti-inflammatories - I just take over the counter ones,
4. Have a mouth guard made by my dentist - I am collecting this today.
5. If this doesn't work then I need to see a maxilla-facial surgeon.

* This was agony by the way and the dentist said to stop until I am using the mouth guard.

I also have physio for my back and the physio is spending half the session on my neck which is very tight.

2016Hopeful Mon 22-Feb-16 13:12:49

Zesty - that sounds like a bit of a nightmare. Can't believe that it takes so long for a diagnosis!!!

Does your jaw click at all? I would book the max fax anyway as they should scan your jaw properly. If the cartilage has slipped out of place your may need special treatment. Sounds like a muscular thing though I think this can still unlodge the disk. It really confuses me.

Hope the night guard helps you.

2016Hopeful Mon 22-Feb-16 13:19:39

Just called a TMJ specialist dentist and feel worse now. First consultation (1.5 - 2 hours) with no scans would cost £499.

She made me feel really bad and scared me saying I needed treatment straight away before it becomes a chronic condition and that the NHS wouldn't do the splint therapy as well as what they do!!! But if I can't afford the initial consultation then how could I afford the rest???! She didn't really answer my question on how my jaw can be cracking without moving - said something about crepitus but I think that is bone on bone and this clicking definitely isn't.

Will push for my max fax appointment to be asap I think as I can't rest until either I feel totally better or someone tells me what is going on!

slebmum1 Mon 22-Feb-16 15:38:05

I had tmj and its bloody awful. In my case it was stress induced, clenching at night. I went to a private consultant after my dentist referred me to max-fab and it was a 6 week wait. I couldn't even open my jaw enough for him to get his little finger in.

Anyway he offered me diazepam (nope, 5 month old twins, hence the stress). Surgery was mentioned.

In the end it resolved itself but it took about a year. I made my own mouth guards with the teeth whitening lots - about £9 in boots. Could be worth a go?

hunibuni Mon 22-Feb-16 15:57:11

I have TMJD and I have been using my mouthguard every night for almost a year. Together with regular back and neck massage, meditation and pain relief it has improved to the point that I can just about get 3 fingers in my mouth (I couldn't even get my little finger in at the worst stage). I had all of my wisdom teeth removed ages ago because of over crowding and I notice that I find it difficult to wear the mouthguard if I don't do it for a week or so. My eye teeth have moved so I'll probably get top braces at some point but I will have to use the mouthguard in the long term.

ZestyDragon Mon 22-Feb-16 19:15:48

Hopeful I actually don't have any clicking and unlike most of you have no issue with opening my mouth. The main thing is ear pain and infections. That's why the doctors thought it was an ENT issue.

Like hunibuni I think its a stress issue for me - busy stressful job and in the last year a stressed depressed DH and toxic inlaws, going NC and LC with various ones. Its all taken its toll on us and this has been the result for me I guess.

I picked up my mouth guard today from the dentist - who wears one himself so was very helpful!

My private consultant was £185 but he was ENT. The dentist is NHS and the guard cost £100. The NHS max fac guy is 6 months minimum wait but I wont be referred unless this doesn't work. I am ok with that. I am going to keep up the physio massage to help ease the tightness. Oh and the meditation - I am struggling with that.....

seoda24 Mon 22-Feb-16 19:54:57

I was also told I suffer from this.Does anyone else find the mouthguard horrible to use ?I seem to last two hours and out it goes so I suppose it is not helping the jaw pain.I am still puzzled by my symptoms... Jaw pain one side randomly and ear pain but I never feel myself grinding or clenching teeth.I do have an overbite.However, I also suffer from a deviated septum due to a broken nose and I still maintain the sore jaw may be connected to this but no one ever made the connection so I was told its TMJ.Still in the dark about treating the random waves of soreness when opening mouth

hunibuni Mon 22-Feb-16 20:09:30

seoda Mine was diagnosed when one side of my jaw got hot and inflamed. The Drs thought I had a blocked salivary gland, which is highly likely, but my dentist said I was clenching when sleeping. I thought I wasn't but I found myself noticing that I was doing it while working. The mouthguard does take a while to get used to but it does really ease the tension.

LivingInMidnight Mon 22-Feb-16 20:18:03

You'll get used to the mouth guard seoda.

The NHS were brilliant for me, there was nothing a private specialist could have offered that they wouldn't have done. At the same time mine wasn't fixable, they just got it to a manageable level. You get used to it eventually.

It's a long process though. The best thing to do OP is just calm down about the whole thing. You'll make it worse if you don't.

seoda24 Mon 22-Feb-16 21:06:50

This is very informative, thanks for info.Will purse it so.

seoda24 Mon 22-Feb-16 21:07:34

Sorry I mean pursue !!!

2016Hopeful Wed 24-Feb-16 09:49:37

Thanks for all your comments. TMJD seems to have so many causes and symptoms. I think my problem is that I can't work out why I got it in the first place. The consultant was very vague and said most people get what I have through whiplash but he literally looked at me for a couple of minutes so feel he was rushing me through to see more important patients!!! I haven't so much as tripped over that I can think of!! I did a lot of running in Oct/Nov and thought I might have jolted it doing that, but I have had periods of running before which haven't affected my jaw at all.

I do feel a lot better in that my bite seems to be back and my jaw isn't locking or clicking anymore. However, it seems stiff and I can't move my bottom jaw forward easily, also I am not sure I can open it as wide as I could , but as I am eating soft food and not opening my mouth as wide anyway maybe the muscles have gone tight? Also, by the evening it feels really strange and itchy/sore. If I rub my masseter (?)muscle it sounds like someone has poured popping candy down the side of my face and this sound can go on for hours without even moving my jaw. I kind of feel like it is healing but am worried it will all start up again due to the initial cause not being addressed.

I am pretty sure I don't grind my teeth but how do you know if you clench? If I do I think it would be in the day as when I sleep I usually have mouth open and jaw feels best first thing before I start moving it!!! My response to getting this shows what a stress head I am so it wouldn't surprise me if i clench without realising in the day!!

seoda - I am pretty sure I have a deviated septum too as when I look up my nose it is hardly open on one side! I tend to be blocked most of the time in my nose and was told I had chronic rhinitis at one point a few years ago (not that much was done about it). I wonder if this is linked or not?

The pharmacist suggested I try an antihistamine as it is itchy. So am adding this to my daily drug fest!!

You all sound like you have had a lot worse problems with your jaws than I have. Hope you all manage to resolve your problems. I feel like I am making a bit of a fuss about nothing now as it doesn't feel too bad (but not completely better either) but I am worried if the cause isn't addressed it will get worse again.

seoda24 Wed 24-Feb-16 10:37:53

2016Hopeful: I seem to be relating to you in my symptoms.I never had jaw pain until a few months ago.Like you, went to an oral facial pain specialist and the consultation was 5 mins / just wear your night time splint...Ni scan or examination.You should check the a specialist .My consultant told me allergic rhinitis like you (I have multiple allergies so knew that ) plus a deviated septum due to a broken nose ( never knew this) I too , like you am wondering if the deviated septum is related to jaw pain but I have yet to find the answer !!!

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