Does anybody here suffer from TMD (also known as TMJD)

[Fxckingpain]

Sorry I know it's not an AIBU, the health boards are quiet and I'm desperate

I've had this for well over a year now and suffer on a daily basis. My diagnosis is acute myofascial TMD, and I also have a 'disc issue' on one side, whatever that means.

I've tried:
Silicone dental guard perscribed by dentist
Voltarol
Ibuprofen
And I'm currently on a prescription for baclofen

I was due to have physiotherapy and acupuncture through Guys hospital but since coronavirus all non essential appointments were cancelled and I've no idea when they'll be able to see me or if I'll be seen this year at all.

Does anybody have any experience of this condition and is able to share what helped bring some relief? I'm getting desperate, the chronic pain is relentless.

My face hurts, my ears, my temples, I have constant tension headaches at the base of my skull, sporadic tinnitus and vertigo.

Thank you all for replying, I'm finding the thread very helpful.

I'm going to dig out my mouth guard and start wearing it again but during the day. I haven't seen it for months as I gave up using it when after 6 months or so of wearing it at night I saw no improvement.

I'm also going to buy some ibuprofen gel today.

I'm perscribed to take 3 x baclofen daily but my routine has been to take just 2 at bed time. I'm going to trial taking one at lunch time and see whether it takes the edge off. I tend to feel a bit spacey after taking them which is why I only do at night, but hopefully I can find a balance.

I'm going to call the oral surgery department at Guys today and see whether they can give any indication as to when physio is likely to be back on. I waited months for my appointment to come through and then lockdown hit and it went out of the window.

I'm also looking into the non cosmetic botox injections and looking into local chiropractors and osteopaths.

I'm determined to get it sorted.

I didn't find a mouthguard very helpful as, although it protected my teeth, I still managed to clench against it. My dentist gave me a little thing like a small block that clips over my front teeth instead. Apparently we all have a reflex that does not allow us to bite too hard with our front teeth so, by having this block thing it means your front teeth take pressure before the back teeth meet and the jaw clenches. The front teeth are protected by the device but the feedback means your brain switches the muscles off so you don't clench your jaw.
It's been much better for me

I've recently been diagnosed and suffering tonight tbh. Pain in my left ear and just below and feel as if my left ear is clogged up. I didn't realise that it can cause dizziness and tension headaches and felt rough last few days, been glad to be sat down and to top it off, my IBS has played up.

Trying to avoid strong painkillers but using heat on my left hand side usually works. I've been recommended mouth guard by dentist and then again by consultant last week over the phone! However, I'm not keen on paying out for that, when I know I don't grind or clench.

My husband thinks it will all be ok when I look after myself...which in relation to stress is probably true but I wish he wouldn't dismiss the pain I'm in at times.

Hope you feel better soon OP and anyone else suffering.

I suffered with it for many years... I wasn't able to yawn as my mouth wouldn't open more than a few centimeters before my jaw would crack painfully on both sides.
I tried a mouth guard, medication, physio etc, but the thing that resolved it for me was Botox injections into the muscles, and a minor operation to reshape the joints. I haven't had any problems now for nearly 2yrs... 🤞🏻

I have tmj, not as many points of face as you though.

Mine came out off the blue
Constant aching teeth all over
Day in day out .
I told dentist, he said I must grind teeth at night!
Never said any off my teeth were grind down!!
Anyway £200 for mouth guard, in desperation
No change, every night of wearing it
More aching teeth
Back to dentist
Laser treatment on face
£125 3 treatments
No change

Tmj clinic dental hospital
Both side of tmj drop out of place, when I close my mouth
Just suggested physio

Physio telephone appt
Hot/cold gel pack 5 mins x 3 day (buy from Amazon think under £10 for 2)
Exercise
Put tongue at the roof of your mouth
Open mouth slowly
Then close
Do this 5 times
Then bring your chin forward and back
5 times
Then move bottom jaw side to side 5 times

Do this everyday 3 x a day

Personally thinking back
I think it stress/anxiety
Clenching teeth (unknowingly)

I too practice teeth together smiling, so not to clench
and relax face more

It’s only been bad occasionally
Oh and I ditched the mouth guard, it was making my mouth so dry in the night, like waking up needing a drink

Good luck, but try the easy things before spending money
I bet it’s clenching 👍

I needed maxillofacial surgery to cure this.
It was done privately and was very costly but worth it.

Another person saying a soft diet, more extreme for a few weeks to give things a chance to settle then longer term just avoiding the key triggers

OP here

Well I went to an osteopath this morning in the hope it would help me, but she did warn me that it might get worse after the treatment before it gets better. I enthusiastically said no problem let's crack on, whatever helps in the long run. She said she was shocked to see somebody of my age (26) with it this bad.

We did some stretches and exercises, some cracking.

I wasn't prepared for it to get this bad though

Those tension headaches/migraines I get at the base of my skull from the TMD, It has increased ten fold. I feel so nauseous and unwell. I literally feel like I've been kicked in the back of the head by a horse.

I've had to rush home in a taxi as I can't bare the thought of driving when I'm like this.

I'm booked in to go back again next Thursday but I'm going to have to cancel. I can't handle the increase in symptoms given that they were already impacting my day to day living as it were.

Oh dear, not good
Told you to start with the exercise’s and save your money
and not rush in.

I bet it’s bloody clenching now😱
Not nice.

It may well settle later, it’s because you’ve been messed about with pulled & stretch
If you haven’t got gel pack to warm in microwave use hot water bottle even on the back off your head lay down
God I feel for you.

I’m currently sat her with aching teeth! They say clenching but I’m NOT doing it. So why I got it

I think you're right yes, I'm going to save my money and start with what I can do at home.

I've just thrown up from the dizziness

I don't have the packs but I've got a hot water bottle so I'll give that a go. I've used Voltarol which the hospital reccomeded but that hasn't done anything.

So sorry you're suffering aswell, what a huge PITA it is this condition. I've had the aching teeth symptom before so I know how it feels and it's awful.

I didn't realise I clenched until I was told to look out for it, but I'm pretty sure not all cases are due to clenching. I'm in some of the TMD groups on Facebook and alot of people there say theirs is because of their bite, others developed it after needing dental treatment and having their mouth prized open for an extended period of time.

Grrrrrr. Bloody thing!

I hope it's better by tomorrow I have alot to do

My 21 yr old daughter was diagnosed with condylar resorbtion after tmj . No treatment just pain killers and wait and see. Interestingly, a couple of months later she was admitted and treated for sepsis which didn't seem connected and came out of nowhere. Its interesting if there might be a connection.

I have had it for about twenty years, I have a splint which just gives me ulcers.The best thing I did was leave a stressful job, I only get real pain now when I get stressy, I have got used to sitting with my face in ahem “relaxed” mode at home to ease the pain.Mine too was exacerbated by a blow from my ex...

Yes have TMJ & had an op (apparently it was a new procedure) which has helped.

It was more like a free facelift if I’m honest

Has relieved pain but still clicky & can’t open my mouth wide enough for the dentist

Also apparently if you make your mouth an o shape & gently blow it resets the jaw.

Not sure if that’s just unique to me post op?

My sympathies, OP! I was diagnosed with TMJ early this year after
I developed an unexplained rising in my ears following what I thought was a very bad ear infection. Eventually, it got to the point that pretty much my entire facial area hurt (especially right around my back molars, which are apparently completely worn down now!) Turns out,, I was pretty much clenching my jaw all the time due to stress ... and once I got a mouth guard and learned to stop clenching my jaw (no easy feat mind you) all my symptoms pretty much all went away!! (My jaw still clicks very occasionally and sometimes my ears ring for a minute or two, but nothing at all like before.)

Oh, and my dentist was totally useless ... I actually had a root canal in one of my molars (per his instruction) because I went in complaining of cold sensitive which it turns out was also due to the clenching! 😡

I never realised how common this was until I got it myself, I really do feel for all of you who can relate.

It was a strange road to diagnosis. I was treat for ear and throat infections that I didn't have, so took antibiotics I didn't need, and then put on the 2 week pathway to rule out lymphoma (which turned out to be my nodes reacting to the TMD)

Now I'm aware of the clenching I notice it alot but it's such a deeply entrenched habit I just can't stop myself, it happens without me realising and by the time I've noticed and relaxed my jaw it's too late.

I have PTSD so my default is to be on edge and nervous so the clenching is second nature.

I'm not convinced clenching is the only reason I have it though as I also have a disc issue which is probably due to being whacked in the face on a regular basis by a bastard ex.

I'm still taking note of the suggestions here and will definitely go through them one by one until hopefully something helps!

@Fiftysix

My 21 yr old daughter was diagnosed with condylar resorbtion after tmj . No treatment just pain killers and wait and see. Interestingly, a couple of months later she was admitted and treated for sepsis which didn't seem connected and came out of nowhere. Its interesting if there might be a connection.

I hadn't heard of condylar resorbtion before. Coincidentally my TMD began shortly after I battled sepsis myself.

I'm so sorry your daughter went through that, it's a terrible disease and is what landed me with PTSD. I hope she made a full recovery, it was a slow process for me and I'm still not back to %100 after 14 months.

Oops name change fail there, I'm the OP!

Hi op, my GP had diagnosed me with this a few months ago. I was referred to the hospital but appointment was cancelled. I can't open my jaw very wide as it is stuck closed on one side. Quite painful and I can't take ibuprofen because I've asthma and been advised I shouldn't.

It's been stuck closed continuously since January, and then a few times for a couple of days / a week at a time before that.

I'm fed up with it :( the Gp was really dismissive but it affects my life!

@TrustTheGeneGenie

Hi op, my GP had diagnosed me with this a few months ago. I was referred to the hospital but appointment was cancelled. I can't open my jaw very wide as it is stuck closed on one side. Quite painful and I can't take ibuprofen because I've asthma and been advised I shouldn't.

It's been stuck closed continuously since January, and then a few times for a couple of days / a week at a time before that.

I'm fed up with it :( the Gp was really dismissive but it affects my life!

I understand how you're feeling, I'm so sorry you're going through it. My hospital appointments were also cancelled due to covid and my GP is also not interested. I've contacted them twice in two weeks to discuss alternative pain relief/muscle relaxers and they've not called me back despite being promised a call back from reception twice. It's not easy to live with.

Have you contacted the hospital to see whether they will rearrange your appointment? I need to do this myself.

Definitely try some of the suggestions on here. The hospital (before everything was cancelled) told me to use Voltarol, also the heat/cold packs are something that is widely reccomeded.

I'm fortunate in the one sense as my jaw isn't locked closed. That must be hell. Are you able to eat normal food or are you on a liquid diet?

I did find some relief by taking baclofen for a couple of months, the hospital perscribed it and my GP kept it going. Unfortunately it has stopped working now but I definitely reccomend it to others who haven't yet tried it as it did work for me for a period of time

It comes and goes with me, but very painful, at it’s worse I am unable to eat solid foods I also have Multiple Sclerosis, TMJ is quite a common symptom in MS patients.

No I need to ring and try and re arrange it. I hope it will be soon!

I can eat solid food but I can't bite anything because I can't get my mouth round much and also it's really painful the actual biting, so I generally eat like a child and have to chop everything up into tiny pieces and avoid anything too chewy.

I'm seriously considering giving a few different things a go, Botox, osteopath, acupuncture. It's obviously been hard to access that kind of thing but hopefully I will be able to now. I was hoping for my hospital consultation first before I went off piste but I don't think I'll be able to wait unless it's re arranged soon.

I clench my jaw but I think it's a lot to do with how my teeth naturally sit iyswim? I don't grind I know that.

I don't know how I'll ever manage to see a dentist again. I think I'd need general anaesthetic for them to open my jaw tbh!

@whichteaareyou

You can get Botox to relax the muscles it's very effective!

I was going to recommend this as well but you need to see a neurologist not a cosmetic practitioner. You could also discuss muscle relaxants with your GP...I take them for a different condition and have stopped grinding my teeth at night as a result. My dentist said it is sometimes (but rarely) prescribed for jaw issues so might be worth trying.

If you can afford it I also have had much better experiences with private GPs when it comes to willingness to address pain issues

Just a thought, I get a sore tongue,
Does anyone else, ?