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.

[Starrr123]

@granadagirl hi!!!
How long did your symptoms go on for ? Is it ok to pm you please ? Xx

[Starrr123]

@EHCP hi! How is everything atm? My baby is 5 months old and mine was awful! Its now back sooooo bad! Awful ear pain! My oral max dr has asked for an mri from my jaw. But i have rang back and said 8 weeks is way too long for me to wait :( im tempted to try amatriptyline! Have things gotten better for you? X

[EHCP]

Hi @HermionePotter123 OP here.

Not great unfortunately, little to no change WRT the pain. I posted an update just before your post

I haven't heard of a michigan splint or nti device but I'll be going to look those up now! Sorry to hear you're going through the same. It's the pits.

[HermionePotter123]

Sorry for bumping but just wondering how you are now @Fxckingpain. I'm in the exact same boat so I understand how frustrating it is. Has anyone on the thread found relief from either a michigan splint or nti device? Hope everyone is doing a bit better

[EHCP]

Oh I forgot to add.

Amitriptyline has been reccomended but I'm advised to hold off as long as possible due to pregnancy, the doctor will consider prescribing it if I'm unable to manage without - but to be honest after reading about the side effects I'm reluctant to go onto it anyway.

I'm much more interested in norityrptaline as that appears to have less side effects and is better tolerated.

[EHCP]

OP here, just resurrecting this thread in the hope that the replies help somebody.

Sadly there has been no improvement for me but I'll update my journey so far.

Surgery ruled out on the basis I can open my mouth and it doesn't lock shut.

Physio referral came through but was useless. The first few appointments were over the phone and I didn't find it helpful at all. When I was finally seen in person they didn't touch me at all (covid!) So I was never able to ascertain whether I was doing the exercises right.

Still waiting for targeted acupuncture via the NHS.

I'm weaning off baclofen (muscle relaxant) as the hospital said I shouldn't have been kept on if for so long, it stopped helping after a couple of months anyway.

Consultant at Guys has promised me I'm a candidate for botox but I'm not able to have that until next year now as I'm pregnant.

An interesting development though.. I have been able to link the worst flare ups to my cycle / where I'm at hormonally.

It was always at its worst in the lead up to my period (I have a bad PMS week generally) and then during. The consultant said she had several other patients who noted the same and she's actually had to make a couple of referrals to gynae (yep, a dentist referring to gynae.. how odd)

I had a couple of weeks where my symptoms were manageable but then I fell pregnant and it all came back with a vengeance. I'm assuming the change in hormones contributed.

My current regime is using 10% ibuprofen gel and 2 x paracetamol first thing in the morning to try and get ahead of the pain before it gets too bad, sometimes it helps but mostly it doesn't.

I can no longer take ibuprofen or aspirin as it gives me such severe stomach pain I've probably done some damage to my stomach lining after taking it for such a long time.

I hope everybody else here is doing ok and managing as best they can

[es1988]

Hi op. Any updates? I think I’m going through the same. The neck pain is unreal. Possibly due to impacted wisdom teeth 😏

[boppit23]

Have you had cranial osteo before?

[ittakes2]

Can I recommend you look for a cranial Oesto? They are brilliant with issues in the head and have even further training than oestos.

[boppit23]

Hi did you get this sorted? I am currently
Going through the same. I haven’t been diagnosed but I know it is this as I clench my teeth every night flr past like
Couple of
Months and ever since I have a pain on one side all over my face and my ears feel full and jaw clicks. This actually feels like iv
Been punched in the face.. one side of
My face feels heavy I don’t know hard to
Explain to those who haven’t got it. Don’t really suffer from headaches
From it but just feels achy on one side and can tell it does make me feel dizzy sometimes and makes one side of my eye feel tired.. it was
On the right side last
Month now it’s switched to the left. Does acupuncture work.

[BoggiesBonnieBelle]

I had bilateral TMJ arthroplasty on the NHS in 2008 - it worked a treat. I was told I'd end up with two 8 inch scars, but they run up the side of my ears and into my hair, so they are completely undetectable.

My TMJ problems started when I had mumps in 2006. About 6 weeks later I went to the doctor with pain on one side and he thought that I had some residual trapped infection from the mumps. So he prescribed anti-biotics, then stronger anti-biotics, then a longer course of anti-biotics. It didn't help, and the pain grew worse.

My dentist then diagnosed TMJD, and I went on the waiting list for NHS physio, but when I got my first physio appointment it had deteriorated further and I was referred for minor surgery. By the time I got to the top of that waiting list it had deteriorated further and I need major surgery. I had an MRI - I can't remember at which point in the saga. By this time I had surgery I was on a soft diet of scrambled egg, yogurt, chocolate digestives dunked in coffee etc. There was only 18mm between my teeth to push food through. Annoyingly, despite it being very difficult to eat I actually gained weight (too much chocolate mousse!)

The surgery was brilliant. I was off work for a month, and then part time for a fortnight afterwards, but I haven't looked back since.

[MatildaTheCat]

I had persistent popping and crunching for months and months but it finally settled. Then a couple of months ago I had a big dental repair and a couple of days later my jaw locked up and was really sore and restricted for weeks. It has just about settled.

Google facial massage as you can do this on yourself and it’s quite soothing. Don’t give up hope it really can get better.

[AwkwardPaws27]

I've struggled with TMJD on and off for a number of years, I get it on and off, sometimes the pain / discomfort just happens, sometimes precipitated by me overextending/eating something chewy.
I recently saw a new dentist who had a plastic mouth guard made (not silicone - he advised me against that as he said that soft materials can encourage more chewing/grinding for some people. This is a firm plastic, upper and lower, with a small block where the upper and lower front teeth meet, so I can't clench the back teeth).
I've had it for a fortnight and it seems to be helping - my jaw doesn't feel as tight, and I haven't had any episodes of pain so far.

[Nets888]

Do you also get toothache if you clench your teeth? I think I might be clenching in my sleep. No other pains apart from discomfort in a few bottom teeth.

[ChestyNut]

Checking in!
I clench in my sleep, it’s so bad at the minute.
I have an upper silicone guard which isnt doing much!

I wake up with a terrible headache every day.
Dental pain in one side that comes and goes and general achey cheeks.

@GingerLemonTea** I am in an SSRI, could it be that? Darent stop it as will exacerbate stress/anxiety.

Any tips?

[botswanabanana]

Sorry haven't rt whole thread but has anyone mentioned botox. Google it for tmd, has been great for me

[GnomeoNameo]

Thank goodness for this thread - I started with a left-hand-side pressure headache two weeks ago, which mostly resolved but subsided into dull aching in the temples, dizziness, full pressured sensation in the ear. Then gradually focused itself as pain in tempero-mandibular joint, fizzing numb sensation along the edge of my left cheek to my temple (and prickly left-hand-side scalp), pain generally in the teeth around there and slight lumpiness in my throat on the l.h.s.

Most days I wake with a thick "sick" head, aching ear region, tingly numb along my left cheek and dull pain sometimes in my left temple. Also direct pain in left jaw when I eat and aching down into my left shoulder/neck area.

I have spent three weeks panicking about it but the dentist has said it's almost certainly TMJ. My doctor has given me antibiotics as well.

No bruxism as far as I am aware but I may clench my jaw without realising, and I am stressed (not least about this!) - will try the jaw-dropping thing. If pushed, I will try to get a mouthguard but worried about cost.

[Thisisworsethananticpated]

Op sorry to bump your thread
I’m a bit worried this end
Can I check of these are normal

Headaches Like I’ve never known
Terrible Sensitive pain if I eat or drink anything , the sensitivity is OFF the scale throbbing agony
Plus the usual jaw ache

Have osteo sat am and a cal with GP later
What drugs shall I beg for ?

Sorry ! I’m home alone so any advice this is normal appreciated

[Thisisworsethananticpated]

As thanks ! I’m also feverish 🥵 is that usual
God it’s painful , painkillers not even touching it
I’m 99% sure this is it but just shocked how bad it’s got

[AstridAv]

@Thisisworsethananticpated I find a hot water bottle helps when it flares. Was also given a mouthguard that was made by my dentist and its actually helped lots. I also make a conscious effort throughout the day not to tense it and thats helped too. Im sorry I know its awful

[Thisisworsethananticpated]

Sorry just bumping as also have this
Whole jaw aches and painkillers not even touching the side
Will read all

[granadagirl]

Fxckingpain
The pain at the back uff your neck, it’s made me think

If I wake up in the night sometimes , I’m usually on my back.
If I go to move my head it feels really heavy like it’s locked and I’m scared to move it
I have to move it really slowly, told gp sent me for mri scan just said degenerative wear & tear !

I’ve tried to try and take note of position etc
I noticed when I woke the other night
I was on my back but my head was turned to the left !!?

Yesterday I was out shopping (anxiety sufferer) didn’t think I was stressed if anything adrenaline. Anyway on the way home headache started! So I took 2 paracetamol when I got home 4pm By 6pm my teeth aghh aching all of them. Another 2 paracetamol 8pm the aching was an 8 easy. It took me a while to drop off, actually holding my jaw.

I’m so confused dental say tmj
I think is it stress related that brings it on.
As if the pain isn’t enough, the thought of why and what can you do is stressful
I don’t even know how it started
I know it was aching teeth first
Then I noticed the pain when I tried to turn over the pain/lock in neck would wake me up.

Do you find after the exercise’s your mouth/teeth ache?

[AstridAv]

Can i join?! Literwlly been diagnosed with this this afternoon by a dentist. Been having terrible ear pain, pain in my forehead, headaches, dizziness and issues with my vision.

Anyone else get visual issues with this?

Dentist put fingers in my ears and kind of pushed forwards and got me to open my mouth wide. I nearly cried. Said its TMD and fitted me for s mouth guard for nighttime but said there isn't much that can be done except a referal to specialist when normality resumes.

Any tips and tricks? Its agony. Ive actually just vomited due to the pain :( especially since I've just been prodded and poked.

[MrsPerfect12]

I'm sorry I haven't read everything g so forgive me if this has been mentioned.
I was a big sufferer even to the point I couldn't open my mouth wide enough to fit my toothbrush in. My was caused first by grinding and then clenching my jaw. I did relaxation therapy with the NHS and was nearly at the point of having Botox injected into the muscle to stop my grinding/clenching but ultimately it all calmed down when I quit my very stressful job. I'm not saying do that but defo look at your lifestyle and stress factors as that's what caused all mine. Hope you find some relief. I'm not completely sorted but I can feel it flare up and I'm aware when I start clenching when I wouldn't realise until I had pain before.
When going through treatment I wasn't allowed to bite into apples or corn on the cob (couldn't open my mouth for that anyway) chewing gum, crusty bread and steak. Anything that required major chewing was a no no.

[Concestor]

Hi OP, no mine always feel so much better after an osteo session, she works in the mouth and on the outer jaw and the masseter muscle too and it makes such a difference. I haven't been since march and my jaw is really crunchy and clicky right now, I really need to go back just not sure if it's safe.