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

(36 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)

OP’s posts: |
JV94 Fri 06-Sep-19 07:10:23

I know it's an old thread, but I was wondering how people's conditions were doing now that some time had past?

I too had a surgeon (at the ENT hospital near Kings Cross) pull my jaw wide open causing my disc to dislocate during what was supposed to be a routine wisdom teeth extraction.

I have learnt now that this is not fixable. However, I have learned this on my own. The consultants here will never be honest with you about this. They know nothing. They are not educated in it at all and therefore are forced to downplay how serious it is. This gives people false hope. At the start you think its not that bad. But over time this will leave you suicidal. The advice that they don't give using a serious tone is that you even though you are not in pain at the start and you may just experience clicking, eventually if you carry on as normal by opening your mouth wider than 1cm and chewing food, it will ruin your joint and there will come a time when it will lock shut completely and there will be nothing these surgeons can do to permanently fix it.

Joint replacement has been very controversial with a lot of people's lives being left devastated by dodgy replacements who seemed fine for a few year but eventually it ruined their bones. This surgery is non reversible and the chances of getting an auto immune disease is high. Risks are huge!!

Watch the videos on the link below. This condition is no joke. It gets worse. Its a ticking time bomb and these world leading surgeons actually should not be trusted. I was given a mouth guard at Guy's by a training dentist, that after I wore, left me in permanent pain because I was clenching with my tmj disc not there to cushion the joint. The dental consultants don't have a clue. They don't even look at your MRI. They just read the report and hand these things out like it says in their text books they memorised to pass their exams.

nationalacademies.org/hmd/Activities/PublicHealth/TemporomandibularDisorders/2019-MAR-28/Videos/S0/1.aspx

If you just have minor pain i urge you to take it seriously. Stop using your jaws.

TickleMyTitsTillFriday Fri 12-Dec-14 08:13:24

I've just been dI agios ed with this and am feeling pretty miserable and sorry for myself! Already on tramadol, amytriptline and naproxen for mu back and it STILL hurts. I know this is a zombie thread but I'm in too much pain to give a shit right now!

Mrsmorton Wed 15-Jan-14 16:40:57

Yes precisely. It allows all the ligaments around the TMJ to relax. I've broken mine and keep meaning to make another bcse I've been waking with stinking headaches and Unopenable mouth but I'm too sad and I CBA.

storynanny Wed 15-Jan-14 16:36:25

had a look at lucia jig, its sound promising, I will mention it to my dentist, thanks. I suppose it is a bit similar to an idea I also read somewhere ie put your tongue between teeth to make sure you are not clenching teeth and making the problem worse.

Mrsmorton Wed 15-Jan-14 14:37:23

I'm a dentist and I have TMJ disfunction. I made my self a little thing called a lucia jig (which you can google) and when I wear it overnight, the pain is gone. They are easy to make but probably not on an NHS code? I don't know and you can only wear them at night but they are worth a try.

storynanny Wed 15-Jan-14 13:38:54

oddly enough though, when I saw the consultant after having the xray, she said she didnt believe in exercising as it could make it worse! Not sure how I could make it even worse than it is at the moment though so will have another try at that exercise, I did see it recommended on an online health site.

PiggyPlumPie Tue 14-Jan-14 22:00:55

Apologies if anyone has already tried this . I had TMJDS years ago and was given a mouth exercise to do which really helped. It is a bit difficult to explain but here goes...

Place the tip of your tongue on the roof of your mouth. Slowly open your mouth as wide as you can whilst keeping your tongue on the roof of your mouth. Repeat.

It sounds and feels like it won't do any good but did for me.

Saltire Tue 14-Jan-14 19:59:33

I have TMJ. The doc says mine is caused by my Fibromyalgia. I find that naproxen (which i am prescribed anyway) or ibuprofen seem to help more than paracetamol, and if I am resting, I put a hot water bottle, wrapped in a towel on my jaw it sems to help

storynanny Tue 14-Jan-14 14:36:06

Ive tried every painkiller going but nothing helps, Im going to get a second opinion and ask for alternative "cures"

SadFreak Mon 13-Jan-14 23:48:13

Hi Storynanny

I am sat up in bed tonight in agony with this. Mine is made worse with stress and more teeth grinding.

I have not yet found a cure. Diazepam can help with the muscle spasm and tensesness though and I usually find that and a mix of strong painkillers can help a little. The problem with diazepam its very short term acting so ideally its taken before bed so you get some relief loing enough to fall asleep. I started off on 2mg - a very low dose and then built up a little. I dont take it all the time just when having a painful flareup and if the painkillers are not relieving me after a few days.
Sadly the codine messes up my IBS but it can help. I have some Naproxen in so may try that later (took paracetamol 2 hours ago) to see if it relieves the pain.

storynanny Mon 13-Jan-14 18:59:52

Did any of you get rid of your jaw pain? Ive had left jaw pain for 16 months after having a clicky jaw for a few weeks. Xray at maxifacial place said " muscular" . It is really painful everytime I move my mouth etc, would like to hear if any of you managed to find a "cure"
Ps I dont recognise any of your names so not sure if any of you will reply.

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

OP’s posts: |
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

OP’s posts: |
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

OP’s posts: |
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.

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.....

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.

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

OP’s posts: |
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]

OP’s posts: |
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.

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.

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.

IDismyname 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!)

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.

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