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oowwwwwwooooooOOOOoo o! any one else with TMJ disorder?(sorry-long WHINGE)

(34 Posts)
SpringHeeledJack Mon 21-May-12 18:12:58

apols if you thought it was wolefs

it was merely a hooowl of pain

have had temporomandibular joint disorder since a butcher some fucker in a dentist's coat removed one of my wisdom teef- a smidge at a time over the spoace of more than an hour- about 9 years ago

most of the time I am ok, but then BANG- I get a dull ache in my jaw joint- which spreads to my ear, cheek and teeth- which can knock me out for a week or more. It's like the worst toothache in the world. Times a thousand

ho no! I am not exaggerating. How very dare you.

because it's not really fixable, dentists don't treat it seriously (well, none of the twelvety thousand I've seen have- they've given me guards and all sorts but the best they can come up with now is the Rueful Shrug)- doctors do the pain relief bit but can't help with the condition itself cos it's perceived as a dental prob)

hmm

just wondered if anyone on here had it ever and fancies popping in for a whine every now and then. My nearest and dearest are sick of it

I shall pop back periodically and bump just in case

meantime am off to bed, parking kids in front of telly while ripped to the tits on diazepam, amitriptylene, paracetamol and with hot bag on cheek.

(that's me, not them, of course)

Madsometimes Mon 21-May-12 21:22:24

I don't know anything about this at all, but you have my sympathy. Have you tried contacting a dental school, if your condition is rare? There may be an expert in a dental hospital, rather than being pushed from pillar to post.

mumat39 Mon 21-May-12 21:40:52

Hello.

About 23 years ago (gosh that makes me feel OLD sad !!!) I used to wake up in the morning unable to open my mouth. I literally felt like tin man and needed to move my mouth slowly until the joint loosened up enough to open it. It used to be really painful and when I went to the gP he said I had trimandibular joint syndrome, but it was a long time ago so it could have been tempero mandibular. He said mine was because I chewed like a cow blush and that the joint was worn. He said the only thing they could do was to inject the joint to relieve the pain but that it would always come back. I'm not sure if this option would still be available but it might be an option.

I think mine was maybe stress related. It seemed to slowly resolve itself but now I occasionally get a locked jaw which I think is related. This is only momentary but feels horrible as it happens if I yawn or laugh out loudly. Like I said it's only for a few seconds but it hurts loads when it unsticks. The funny thing is my sister also gets this so it must be something in the family.

Anyway, just wanted to say hello and that I hope you can find someone who can help you.

take care

Puremince Mon 21-May-12 21:57:36

I had surgery for mine, and it was a total success. I had bilateral TMJ arthroplasty; the surgeon cut down both sides; the same incision as a facelift, starting in my hair to the top of my ears, then down the side of my ears, he un-hooked my jaw, smoothed everything down, hooked my jaw back up, and sewed everything up nice and tidy. After several years of pain it was like a miracle. I can pretty much eat anything now, though I'm still a bit careful, e.g. if I want to eat an apple, I'll cut it into quarters first, rather than biting straight into a whole one.
(The lovely NHS surgeon thanks)

MrsZoidberg Mon 21-May-12 22:06:11

Oooh I feel for you. I have it but can usually control it - no chewing things like gum or toffees, trying to eat on both sides etc.

I was diagnosed when I woke up one morning unable to open my mouth. It lasted over a month and was a great way to lose weight hmm. Mine was caused by grinding my teeth when stressed. But the lock occured when my dog head butted my cheek.

Worst bit was the very young doctor umming and ahhing before suggesting that I was careful when ummm aaaah kissing passionately blush no more BJs for DH grin

Have you tried rubbing something like Ibuleve onto the affected joint? I also used to alternate hot and cold packs.

SpringHeeledJack Tue 22-May-12 08:00:32

aww, thanks all

I didn't expect anyone to post on here and was just going to keep bumping it daily!

will reply proply later when I've grimaced my way through school run

(there's no emoticon for grimace so this 'un will have to do grin)

starwarrior Tue 22-May-12 17:21:20

Worth looking at sleeping position and pillows, avoid sitting with jaw/chin resting on hand etc, anything that puts pressure on the jaw.
I had what my dentist said was TMJ disorder for 3 years, nothing helped, eating was difficult as I could only open my mouth a couple of cms. It started to get better after I changed my pillows for a memory foam one (the pillow took a bit of getting used to as it was fairly flat). I had no idea it might help the jaw pain, I'd bought a memory foam mattress and the pillow was a free gift. Now, after a few months the pain has almost gone and I can open my mouth normally. Looking back, I must have caused the problem by always sleeping on the same side and bunching the pillows under my jaw so they put pressure on the joint.

shitmagnet Wed 23-May-12 09:43:27

I have this as part of my RA. It is pretty bad, I can only open my mouth around 1cm and cannot chew - so I live on smoothies! The joints are also very "crunchy" and unstable - for a while there I was waking with my whole lower jaw unhinged, I would have to pick it up with my hands and bite together until it stayed put. They are the only joints that haven't responded well to the bios I am on - I don't know what will happen tbh, probably surgery at some point. The dentist can't even get in there to look until I can open my mouth a bit wider. It's highly inconvenient... I don't really notice the pain anymore.

SpringHeeledJack Wed 23-May-12 17:28:28

sorry I haven't replied

have spent most of week just doing the things I really have to do, and the rest of the time mostly groaning...tbh if it keeps me off Twitter/mn, it must really hurt wink

mad thanks for that- I was seeing a consultant at big London teaching hosp, but after the mouthguard they gave me didn't work, they've got fed up of me, I think-I don't really think they can do any more, tbh

mumat39 helpful to know that it can just bugger off of its own accord. Dental consultant told me it would sooner or later- mind you that was about 7 years ago so have Lost Faith a bit

he also told me it was stress related and that I probably grind my teeth, and just focused on that- but noone, including dp, has ever noticed me grinding, which is weird. I mean, I've shared a bed with a tooth grinder in the past, and it's not the sort of thing you can ignore, iykwim. Also it doesn't really seem to come at stressful times- it appears to be a bit more random than that

mince glad your op was a success-how fabulous. Consultant told me surgery was a possibility, but that because my jaw/teeth were so misaligned, it would involve filing down this and building up that with no guarantee that it would make things better- in fact, that it coud get worse, so I quickly shelved that option

MrsZ after a saucy deputy dental consultant (or whatever they're called) expressed amaaazement at the general tininess of my mouth, and advised me not to open it too far, That Sort Of Thing has been way off the menu for dp as well

he's delighted grin

star good idea- I am going to try a memory pillow. While I'm at it am going to try hypnotherapy and acupuncture, too. I'm desperate enough to have a go at just about anything

and shitmagnet god you have my sincere sympathy. And to not really notice the pain any more- you're a stronger woman than me. I can (and have) cope with pain just about anywhere else, but facial pain has me quivering and gibbering like a baby

Grumpystiltskin Wed 23-May-12 20:09:56

Have you looked at the BSOS website? They have a list of people who "do" TMJD and are pretty good at it.

Puremince Wed 23-May-12 20:12:33

That Sort of Thing is off-limits for DH, too. Last year when I went for an annual check-up, I was asked if I'd mind being exhibited to a group of dental students. One of them asked if there was anything I couldn't do post-op, and I wiffled away about cutting up apples. Then the consultant asked about any other restrictions, and I thought of that one, but didn't want to shock a group of innocent looking students.....

Pre-op I could only open my mouth 17mm; now it's 38mm, still below average but plenty enough for most things.

I actually managed to gain weight when I could only open 17mm because the perfect food was chocolate digestives, dunked in coffee and posted in.

fridakahlo Wed 23-May-12 20:14:10

I get it mildly as a side effect of the anti-d's I'm on but my jaw has always been dodgy, it used to click a lot and occasionally get locked.

blue2 Wed 23-May-12 20:27:31

My ds has had TMJD since February. He's missed loads of school, and has been in serious pain. It was caused by teeth clenching and not teeth grinding, so dentist didn't twig

The things that have worked (a bit) for us are the following:
1. Voltarol on the jaw area but maybe not if you're on Diflenac (sp?)
2. Ice packs
3. He wears a splint in front teeth at night
4. Amytriptyline
5. NLP - it helped him a lot to get to grip with the constant pain
6. Visits to a chiropractor to ease neck and back stiffness
7. Visits to cranial osteopath in Redhill who used to be a dentist specialsing in TMJD but retrained.

Lastly, He's seeing a maxiliofacial consultant who has botox at the ready. It paralyses the jaw muscles and have heard great stories of recovery. Trouble is, DS is only young, so consultant reluctant to inject, unless really bad.

PM me if you want more info.
(Seeing the list above, no wonder I am so broke!)

silverangel Thu 24-May-12 09:17:30

I have it, its hideous and my dentist doesn't care! Saw a private consultant who gave me exercises to do 8 times a day. I have 9 month old twins - I simply don't have the time. My problem is more with restriction than pain, on a bad day I can open my jaw about 1cm, a good day 2. It started as soon as my twins were delivered, dentist said I was grinding due to stress - but no evidence on tooth surfaces and DH never heatd it. As someone said further up I think he would know if I was grinding and I'm genuinely not stressed.

Blue - seeing what you said about the botox I'm going to go back and see consultant again. He did say he could prescribe valium or similar but I don't fancy that with the babies to look after so that sounds like it could be an alternative.

Puremince Thu 24-May-12 09:40:54

Mine started when, aged 40, I got mumps. The lovely surgeon thinks I must have been borderline before then, and claims there's evidence I had been grinding my teeth, but I certainly wasn't aware of that.

Anyway, I had mumps and I think I started eating oddly, because everything was swollen and tender. After a few months, with increasing intermittent pain, I went to my GP, who diagnosed an ongoing pocket of infection and prescribed anti-biotics. Then more anti-biotics. Then industrial strength anti-biotics. Then the GP thought that the mumps must have swollen and distorted my pineal (?) gland. So I had it scanned, but it was fine. My GP was doing his best, but the weeks and months were ticking past, the pain was becoming more frequent and more severe.

Then my dentist diagnosed TMJ and referred me direct to the hospital Maxillio-facial dept. I had an MRI which confirmed TMJ. I went on a waiting list for minor surgery, but by the time I was at the top of the list it had worsened, and I had to wait a further two months for major surgery. Which was a total, blessed success.

From mumps to surgery was 3 years, 5 months.

MikeLitoris Thu 24-May-12 09:59:06

Marking my place as I have this too.

I've tried various pain relief over the last 8 years and am currently using a mix of amtriptyline, naproxene and co-cocodamol. Paracetemols and ibuprofen do not even touch the pain.

I've tried a mouth guard at night but that didn't help. I don't think mine is caused by grinding my teeth though.

I have an appointment next month with maxillo facial surgery team to discuss alternatives.

Having had 3 dc I can honestly say Tmj is worse than childbirth. Horrible, horrible pain.

SpringHeeledJack Thu 24-May-12 16:59:37

god blue2- poor ds

it's shit enough for an adult, let alone a child sad

I should make a bit of a fuss and try and get UNsigned-off the consultants list, reading some of these posts

interesting that yours coincided with twins, silverangel. The consultant, on hearing I had baby twins, sort of went "bingo!" and decided there and then that it was down to stress (cos twins=stress, natch hmm)- he's never been interested in my shit dentist tales, dental history etc etc. I've never had anything beyond an x ray, either

today have bottled decided against alt therapies for the time being, and have ordered a memory foam pillow, a small massage thingy and some magnesium spray

confused

also

[desperate]

SpringHeeledJack Thu 24-May-12 17:02:00

oh and Mike

what you said- about it being worse than having three babies. I say this frequently

funny thing is I had one labour and a c section with a tricksy recovery- amongst loads of other pain-y things- without a squeak. This however has me weeping

Grumpystiltskin Thu 24-May-12 20:33:27

Can I just reiterate the bsos. These dentists love TMJD, there is an excellent dentist called Andy Lane who lives and breathes this. Maxillofacial surgeons on the whole, don't. They resect people's heads and reconstruct them after car accidents and trauma, that is sexy to them, TMJD just isn't. Despite the debilitating nature of it (you can't rest your jaw joint) many dentists hardly believe it exists.

Please look at the website and see if there is a dentist near you who looks at these problems. You will have to pay but it will be worth it.

Puremince Thu 24-May-12 21:22:22

I'd say the pain level was about the same as the worst labour pains; but with labour you know that it's going to be over sooner or later - with TMJ there's no end in sight, it just keeps recurring over and over and over again, for days, weeks, months, years.....

MikeLitoris Thu 24-May-12 22:00:22

puremince I think that's what has me in tears sometimes. Knowing that even once that particular episode is over, another flare up is never far away.

MikeLitoris Thu 24-May-12 22:00:22

puremince I think that's what has me in tears sometimes. Knowing that even once that particular episode is over, another flare up is never far away.

SpringHeeledJack Thu 24-May-12 22:01:20

sorry Grumpy- missed that upthread

(missing quite a lot atm. Probly due to being sat up every 4am with peppermint tea, watching shite telly and feeling very, VERY soz for self)

link here

SpringHeeledJack Sat 26-May-12 10:09:14

after sitting up most of the fucking night watching telly and trying not to groooan too loudly, I am now serving notice on myself to sort this out forever

BY ANY MEANS NECESSARY

over the next year- first I am going to do massage, meditation, heat, pillows and shit, and carry on with splint, amitriptylene and over the counter pain meds (am trying to cut down on these a bit, tho)

if that doesn't work- and I have to say I strongly expect it won't hmm- am going for the alt therapies

if, by this time next year, I haven't seen it off completely I will go down Specialist Dentist route as suggested by Grumpy- that should give me a bit of time to save up for the treatment as well grin

SpringHeeledJack Mon 28-May-12 08:13:48

any other sufferers still around

I can say that have prety conclusively proved that Magnesium Oil is not the miracle cure I deluded myself hoped it might be

have my mum coming all day. On three hours (broken) sleep

am comforting self by saying that it can't actually get any worse

arf

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