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.

[IceniSky]

I'll read this post fully later but I posted yesterday about having constant face ache and a clenched jaw that I can't unrelax. Temple pain, tongue ache, crunching. It's so depressing.

[Bollss]

I kinda get an "achey" tongue at the side at the back... Bizzarre.

[LilacSloth]

I've had it for about 10 years now I think. I was initially referred to the local hospital for a mouth guard which did nothing for me as I clench (rather than grind) in my sleep and when I'm stressed or anxious during the day.

Moved area, saw a different GP and was referred to Eastman Dental Hospital in London. They were great and referred me for physio and acupuncture. Was very sceptical but the physio and acupuncture worked so well. Acupuncture made me feel quite queasy as needles were in back of neck etc. but made the most amazing difference to my jaw. I've been pretty much pain free now for about 4 years. It does flare up if I'm feeling particularly anxious but it's very manageable. I try never to yawn wide, would never try to bite into an apple and if I have to have my mouth open wide for a while (dentist or singing etc.) I know to take ibuprofen, do the exercises and a soft diet until it settles.

Definitely nice to hear from others with the condition. When it was really bad I was having time off work as jaw would lock when cleaning teeth in the morning. Work made me feel like I was making up stories but the pain was something I couldn't switch off from.

Would definitely recommend acupuncture and hope you don't have to wait too much longer to be seen.

[CrowdedHouseinQuarantine]

i had tmj, i had exercises from a max fax consultant, which cured it,
gp said caused by stress, i also gave up chewing gum

[BoxAndKnife]

Yes, I have it. My jaw has always been misaligned but I didn't start getting symptoms until after I had lots of orthodontic work (braces, extractions) which I guess changed my bite and exacerbated everything. It's on the right side of my jaw, into my ear. The jaw pain is a constant dull ache, the ear pain can be piercing though and has made me cry at times!

It definitely gets worse with stress. I do lots of yoga now which has helped (normal yoga not 'face' yoga!) but also a firm massage around my jaw and ear every morning helps as well. I do take one 400mg dose of ibuprofen pretty much everyday still but that is a lower dose than I was taking eg: 6 months ago. I make a point of consciously trying to relax my jaw whenever I can and also making sure my shoulders, neck etc are relaxed as well. I know I wake up most mornings with clenched teeth so I probably need a mouthguard.

My GP told me there was no cure apart from surgery but I don't want to go down that route. I do agree with trying all the simple treatments first: massage, yoga, relaxation techniques etc.

It has been absolute agony in the past, you have my sympathy OP. The pain is so distracting. Apparently it's much more common in women, but it's one of those things that don't seem to be very well known.

[Notenoughchocolateomg]

I had TMJ is that the same thing? It was about 10years who now. My jaw only half opened for a bloody year. I had xrays and was sent for physio which helped ease the pain temporarily and was incredibly relaxing. I eventually had an operation where they flushed our the scar tissue which made my jaw open and be pain free it worked. 10 years on a still get pain every now and then, I struggle after the dentist as the insist I open my mouth wider .

[ChristmasFluff]

TMJ probs after having jaw dislocated by abusive ex who threw me into a cupboard. Suspect it never re-located properly? Couldn't open my mouth more than a tiny bit for ages, then it all went ok, then I started TMJ problems about maybe 6 years ago.

It's so much better with my mouthguard in at night - otherwise I wake up and can't open my mouth and have to force it open whilst holding the sides of my face to minimise the pain/crack

Other things I would suggest are craniosacral therapy - specifically cranial base release and mouthwork was good for me.

There's also a weird exercise to relax the jaw muscles:
touch the tip of your tongue to the roof of your mouth then move the tip back as far as possible whilst keeping it in contact with the roof of your mouth. Keeping it in that position, slowly and gently open your mouth as far as you can, whilst still keeping the tip of your tongue in contact with the roof of your mouth. Hold for 30 seconds. Do two repetitions, twice a day.

That's the things that helped me.

Please don't see a chiropractor until you've watched Miles Power explain the dangers of chiropractic on YouTube

[Fxckingpain]

Wow so many people dealing with the same thing, and yet I've never met anybody IRL who has spoken about it. It definitely needs more awareness! My thoughts are with all of you dealing with this shitty disorder and I'm genuinely chuffed for those of you who have recovered. It gives me hope and I haven't had much of that lately, at times it feels like this is it for good.

Very encouraging to read that acupuncture and physiotherapy works, those are the two things I'm due to have via the oral surgery department at Guys in London. I should've done this already but I will definitely call them on Monday and chase it up. I was due to have my physio the very week it was cancelled due to coronavirus.

I'm doing the exercises reccomeded now, tongue on the roof of the mouth and then moving it backwards whilst opening my mouth - so thank you for that suggestion. I'll give an update as to whether it helps as I go on.

I haven't seen the Miles Power video on the dangerous of chiropractic but I'll go and watch it. I actually had seeing a chiropractor on my list of things to try so I may need to revise that.

I would urge caution to anybody thinking of osteopathy, the flare up I had this afternoon after having treatment this morning was horrible. My pain went from a 4 to a strong 8 within a few hours post appointment and the dizziness and migraine actually made me vomit.

I'm on the fence as to whether to return next Thursday or not because she doesn't know for sure that she'll be able to fix it and I don't want to make it worse long term. I was hoping at best I would get some minor relief but I can't deal with how I've been this evening on a regular basis as I have children who require me to be functional.

[Fxckingpain]

I had TMJ is that the same thing?

It's the same condition yes

I've heard it referred to as TMJ, TMD, TMJD. My paperwork from the hospital says acute myofascial TMD. It's all the same thing me thinks.

Surgery results do intrigue me, wash out surgery was mentioned at my hospital appointment as a last resort if nothing else worked but the thing is I'm terrified of surgery, incisions, anything that may lead to infection

[Concestor]

Things that help mine:

Yoga, and good posture
Osteopathy regularly. Mine works inside my mouth and it makes a huge difference
Self massage now I know where to work.
Getting DH to massage. He's not brilliant at it but sometimes just getting someone else to do it works better than doing it myself
Relaxing my face and jaw deliberately and regularly throughout the day
Avoiding alcohol. Drink makes it worse for some reason

It is rubbish, and send never to go away once you have it, but it is possible to get it under control.

[GingerLemonTea]

OP do you take any other medication for anything else?

[GingerLemonTea]

Any SSRIs?

[Screenburn]

I’ve had it for quite a few years now. Started after jaw trauma (allergic reaction that made my jaw clamp shut in a tensed biting position).

It’s always embarrassingly noisy and always hurts a bit, but every now and then (like right now) it will hurt a lot. I use ice/cold packs, a soft diet for a few days/weeks, facial massage (cannot WAIT until my local place opens again) and lots of over-the-counter ibuprofen & codeine mixed. That usually settles it for three or four months or so.
I used to have a lower mouth guard which helped quite a bit until I broke it and couldn’t afford to replace it at £750

[silver1977]

Hi OP, I suffered with this for many years also. I had the joint flushed twice which eased things for a short while before returning back to how it was. I then opted for surgery as I couldn't imagine having the pain for the rest of my life. It was the best decision for me, completely solved it. I also had 4 wisdom teeth out at the same time.

I'd tried the mouth guard, physio, hot/cold, nothing really worked enough. Having the joint flushed was apparantly a very simple procedure so I wouldn't necessarily disregard considering it as it may help you?
I was 21 when I had the op. I'd got accidentally kneed in the jaw on a bouncy castle as a child!

[Fxckingpain]

@zurala did you find that osteopathy made it worse initially? My first appointment was today and I've had the worst flare up to date after I left. She worked on my neck as the base of my skull is where I get the worst migraines and it feels real awful at the minute. I'm going back next week to have her work on my jaw and I'm dreading it and am on the fence whether to risk it. She did pre warn me that it could get worse before it gets better.

@GingerLemonTea I'm not on any SSRI's no. I do take Propanolol (beta blockers) on an as and when needed basis but not regularly. Other than that, the only medication I take is ibuprofen.

[Idontbelieveit12]

Mine is pretty settled at the moment, I think it started with a bad experience at the dentist, abscess, needed an extraction, emergency dentist was adamant they knew which tooth it was, so didn’t x-ray me. They pulled the wrong tooth. Ended up with trismus, could hardly open my mouth. It was awful. I also have anxiety so clench and grind more when I am anxious. I drive my hubby and kids mad because every time I chew when eating my jaw clicks 🙄

[Fxckingpain]

@Screenburn £750 Is insane I was fortunate in that I didn't need to pay for my mouth guard as it was within a year of having my baby. There's no way I could afford that. I'm sorry you're now having to go without, that's shit. Hopefully you can see your message therapist soon, I really feel for you

@silver1977 I've been humming and ahhing about asking the hospital to just jump to doing the wash out surgery but honestly the thought frightens me. I have PTSD from a near death experience last year where an infection almost cost me my life, so I'm a huge wuss in regards to anything that could wind up with me having sepsis again.

That being said I do enjoy hearing from people who have found it a success, I wouldn't totally rule it out I would just need to woman up a bit and get past my fear of surgery. Are you awake during the procedure (wash out)? I would prefer to be awake but numb, as bonkers as that sounds

[healththrowawayx]

Sorry, I haven’t read all the posts. I get Botox - it’s a godsend. Nothing else really helped honestly.

[healththrowawayx]

couldn’t afford to replace it at £750 shock

Errr wtf? It’s a band 3 nhs charge and dentists even charge less than that privately! My nhs dentist charges £100 private.

[Fxckingpain]

@Idontbelieveit12 ditto, another anxious person here. Clenching has become my subconscious default and I can't seem to break the habit

I really hope yours stays settled and manageable for you!

[Fxckingpain]

@healththrowawayx I'm hearing great stuff about botox and it has definitely piqued my interest!

One querie I have though, whilst my pain is caused by the TMJ and massater (sp?) muscles.. a huge part of my pain and trouble is situated at the base of my skull / very top of my neck at the back.

I understand it's all connected somehow but was this something you experienced yourself and was that specific symptom helped by the botox?

I would definitely be prepared to spend on the botox providing I knew it would help this specific symptom as it's the most troublesome, I'd say it's 60/40 IRT the base of my skull and then my jaw (base of skull being the most problematic)

[silver1977]

I can completely understand that if you've had a bad experience OP. I had it done under a general anaesthetic but you may be able to be awake I don't know? It was just a tiny pinprick mark covered with a plaster when I came round, it felt a little tight to start with, I could hear it sounded squelchy, all the fluid I guess, but it gradually eased. Maybe ask some more questions at your next appointment?

[RainingMeatballs]

I had it for years, but it has resolved. I’m not totally sure why or how. I couldn’t even clench my teeth which felt odd.
I think it was a combination of having a wisdom tooth out and my jaw sitting differently, a night guard for a while (and this sounds odd) retraining how I held my jaw. My teeth were always pressed together, I consciously held my jaw relaxed and apart until it became the norm. I also did face yoga position L’s as it got achy for months. Something changed as my front teeth now meet in a bit whereas they didn’t before.
It’s not perfect, I’m more prone to discomfort from positions and chewing, but it doesn’t click or grind, I rarely have pain, I can clench my teeth and it feels even

[ECBC]

I got a mouth guard, meditated (stress made it worse) and had acupuncture. Eventually I grew out of it. I also found it was worst first thing in the morning so used to have softer foods for breakfast

[healththrowawayx]

I didn’t get the skull pain. My temples would ache though, almost as much as my masseter muscles! The muscles in both areas were just as enlarged.

Have you had x-rays? The skull issue makes me wonder whether you have a physical problem with your TMJ. If the x-rays are normal, then it’s a muscular issue where Botox may help.

I had TMD Botox under the NHS so cost wasn’t an issue. I had a referral to a dental hospital from my dentist.

However if you do go private, you will probably have more aesthetically pleasing results - not sure if you’re aware but there’s a good chance of asymmetry/weak smile due to the location of the injections. Eg For 6 months I couldn’t make this face - 😬. I feel like private drs might work with you to avoid side effects more.