Talk

Advanced search

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

(52 Posts)
Fxckingpain Fri 26-Jun-20 21:12:56

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

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.

OP’s posts: |
ItsNotAGameOfSubbuteoMatthew Fri 26-Jun-20 21:16:58

I had an anterior repositioner for over a year. It made it bearable and then finally got my teeth built up so they met in the new position and the joint pain went away.

It clicked every time I opened my mouth. I couldn't chew anything chewy like steak or french bread. I was in agony. It was a long time fixing but the painkillers stopped working in the end and I had to go on amitriptyline.

ItsNotAGameOfSubbuteoMatthew Fri 26-Jun-20 21:18:35

I also had physio which relieved the pain but didn't solve the problem. My dentist solved the problem and I will love him forever for it! My next dentist was recommended by him and has kept me on an even keel for 15 years.

Fxckingpain Fri 26-Jun-20 21:26:58

My own dentist wasn't very informative about the condition in fact he didn't tell me anything about it at all, but he did refer me on to oral surgery at Guys and It was there that I got the diagnosis and prescription for baclofen. I was scheduled for the treatments I mentioned but then that all went out the window.

Dentist #1 did note there was some signs of teeth grinding on my back teeth so he had a silicone mould made to help with any grinding at night. Sadly it didn't help.

If the problem was my teeth then dentist #1 would have said/done something surely?

During my consultation at Guys I was asked whether I had suffered any type of trauma to the face which I had, many times for several years (abusive ex partner) but the TMD only started last year after a completely separate health problem. The consultant said it could be that the recent health issue triggered the problem that had been underlying.

It just came out of nowhere and now it's constant sad

OP’s posts: |
Alicesweewonders Fri 26-Jun-20 21:27:00

Hi, yes I've suffered with TMJ for over 10 years. It started after dental appointment were i received a filling in a back tooth.

I've been to 4 different hospitals & seen 5 different dentist's. I did the rounds with the NHS but the only thing they could offer was a mouth guard.

I finally seen a dentist that specialised in TMJ and made me a month piece, it reduced the pain by 30%. Better than nothing, but It was very expensive. I'm now just trying to live with it.
I forget what it's like to be completely pain free, it's been so long.

Things that help now are, doing jaw exercises everyday and hot & cold packs. I try to say away from pain killer unless it's a really bad day.

Sorry, that's probably much help. I hope your able to find relief.

Fxckingpain Fri 26-Jun-20 21:28:04

It's brilliant to hear from people who have overcome the condition, thank you for replying. I had resigned myself to being stuck with it for the rest of my life. I'm only 26 and can't imagine another 10 years of this let alone 50.

OP’s posts: |
Fxckingpain Fri 26-Jun-20 21:31:18

Alicesweewonders

Hi, yes I've suffered with TMJ for over 10 years. It started after dental appointment were i received a filling in a back tooth.

I've been to 4 different hospitals & seen 5 different dentist's. I did the rounds with the NHS but the only thing they could offer was a mouth guard.

I finally seen a dentist that specialised in TMJ and made me a month piece, it reduced the pain by 30%. Better than nothing, but It was very expensive. I'm now just trying to live with it.
I forget what it's like to be completely pain free, it's been so long.

Things that help now are, doing jaw exercises everyday and hot & cold packs. I try to say away from pain killer unless it's a really bad day.

Sorry, that's probably much help. I hope your able to find relief.

It is helpful actually, thank you. I haven't been using hot and cold packs so that is definitely something I could try.

I'm sorry you've been suffering too. It really is such a debilitating condition when it's at its worst.

How much are we talking, for a specialist dentist? I don't have alot of money unfortunately and was pinning all hopes on the NHS.

The oral surgery team at the hospital seem very efficient and mentioned the possibility of surgery if all else failed but that's a daunting prospect.

OP’s posts: |
Fxckingpain Fri 26-Jun-20 21:33:27

@ItsNotAGameOfSubbuteoMatthew sorry I forgot to ask, did the amitriptyline help much and do you get side effects from that medication?

OP’s posts: |
paastumho Fri 26-Jun-20 21:35:53

seeing an osteopath really helped me with it. Much better than physio.

Alicesweewonders Fri 26-Jun-20 21:37:47

The dentist i seen was on Harley Street, I only did phase one of the treatment ( as you need to be totally pain free for phase two) and it cost about £7,000.

I would think very careful about any surgical options, research & look into other patients outcomes. If your on Facebook there are a few really good TMJ groups, it's great to talk to people with the same condition, share information & treatments, it's been such a lifeline for me.

Your right it's such a horrible condition, and one not very many people know about. It can be really lonely. sad

Fxckingpain Fri 26-Jun-20 21:40:34

@paastumho how much did you pay and how regularly did you need to go to notice indifference? If you don't mind me asking of course

OP’s posts: |
magicstar1 Fri 26-Jun-20 21:41:40

I had 4 wisdom teeth out, and sooo many appointments for ear pain over the years, before a dentist realised my problems were caused by fringing my back teeth. A guard helped after a while, and over the years it actually went away.

magicstar1 Fri 26-Jun-20 21:43:01

If I put my fingers over my jaw joint, I can feel it popping out, but there’s no pain any more. It’s more of an oddity.

ItsNotAGameOfSubbuteoMatthew Fri 26-Jun-20 22:02:11

Yes the amitriptyline made it bearable whilst we found a solution. It took some getting used to and to come off eventually but it was worth it.

I was 20 at the time so I empathise with the feeling of wanting to find a resolution so you don't have to live like this forever.

If you want to PM me for the names of the dentists which helped me I'd be happy to share them.

It took a few attempts before I found a TMJ specialist. There weren't many 15 years ago so there may be more now but a specialist should be able to help. Mine was caused by braces aged 9 but didn't get sorted till I was early 20s so it can be a long time coming.

PumbaasCucumbas Fri 26-Jun-20 22:02:18

I’ve had it for 20 years or so, never as bad as you but got quite severe with a bad work situation and a stressful life event. I went from clicking with minimal pain to severe ear/joint pain and locking/resistance to opening. I was worried this was my new normal and GP not overly helpful.

Changing jobs and a lot of things settling down meant it gradually it went back to baseline discomfort/just having to be careful. I wasn’t night grinding but daytime clenching when stressed. Can you identify a stress factor to it?

Fxckingpain Fri 26-Jun-20 22:04:39

I get terrible crunching noises when I open my mouth after having it closed for a while and my left and right discs are not in sync. If I touch both TMJ joints and open/close my mouth it's very noticeable how one side pops in and out sooner than the other.

I definitely have some ware to my back teeth and so I suspected the whole thing was caused by grinding but it would appear not, as the mouth guard hasn't helped whatsoever and then the disc issue was discovered sad

OP’s posts: |
Fxckingpain Fri 26-Jun-20 22:07:54

PumbaasCucumbas

I’ve had it for 20 years or so, never as bad as you but got quite severe with a bad work situation and a stressful life event. I went from clicking with minimal pain to severe ear/joint pain and locking/resistance to opening. I was worried this was my new normal and GP not overly helpful.

Changing jobs and a lot of things settling down meant it gradually it went back to baseline discomfort/just having to be careful. I wasn’t night grinding but daytime clenching when stressed. Can you identify a stress factor to it?

It began after I fought sepsis, so I was under a lot of emotional and physical strain. I assume the grinding ramped up alot but I didn't notice it at the time.

Prior to that I had never had a problem with my jaw.

I'm really pleased you managed to get some relief, I'm praying I'll be able to say the same at some point soon

OP’s posts: |
Davincitoad Fri 26-Jun-20 22:08:58

My stupid dentist said some people feel better knowing the name of the condition. Really?

I’ve had it for years. Splints, guards etc etc. Nothing works.

Fxckingpain Fri 26-Jun-20 22:13:48

So sorry to hear that Davinc, I understand the frustration completely.

My dentist wasn't informative at all. He made me the guard to help with the grinding but didn't offer any advice for the TMD. I found the hospital to be more thorough but that has gone out of the window now for the foreseeable.

OP’s posts: |
paastumho Fri 26-Jun-20 22:14:40

the first time I went to the osteopath, the pain reduced by about 70%. It's not a cure though. I just go back when I have a bad flare up. I saw a maxfax specialist who said it was linked to bad posture, so I do yoga regularly.

PeasInAPot Fri 26-Jun-20 22:15:32

Clicking/crunching/popping is quite normal and is normally nothing much to be concerned about. The majority of people have a click

TMJd is basically just where the muscles controlling your jaw go into spasm because they are overworked. It is caused by habits such as clenching/grinding/nail biting/pen chewing. You need to stop the habit to stop the pain

If theres wear on your back teeth it is most likey clenching/or grinding. This is normally at night but can be during the day. A lower bite gaurd normally helps, but there are other types of gaurd that can be made. You basically need to make sure you are conciously relaxing your jaw throughout the day, everytime you notice your teeth are together relax them. People find relaxing before sleep can help, breathing excercise etc. avoiding screens before bed.

Hot compresses can help, a soft diet and ibuprofen gel. Some people benefit from amitriptyline, but really you need to break the habit.

Theres no surgical intervention really, unless your jaw is locked. To be perfectly honest it is usually caused by stress, so it would be worth looking at areas that might be causing stress

PeasInAPot Fri 26-Jun-20 22:18:26

@Davincitoad thats actually true

A lot of people get really worked up and anxious about it, knowing what it is and that its not something nasty helps. It can end up in a bit of a spiral, people get anxious about it so clench more, get more anxious so clench more. A lot of people worry it means they need an operation or that its cancer, when its really just an overworked set of muscles.

Fxckingpain Fri 26-Jun-20 22:26:19

These replies are very very helpful, thank you!

Stress is a big problem, I've had nothing but that for the past 18 months so it's no coincidence that this has come on now.

Coincidently as mentioned above, I (and my GP actually) thought it was something sinister. My lymph nodes under my jaw swelled in response to the inflammation and were stuck that way for several months, when I finally worked up the courage to see my GP I was immediately put on the two week pathway with a view to looking for lymphoma.

It was terrifying, which only made me stress more.

Fortunately all tests came back ok and that was when investigations were made via the dentist / referral to the oral surgery department.

It has helped me (mentally) to know what it is, because before that I was a nervous wreck. I just need the pain to go now grin

OP’s posts: |
ItsNotAGameOfSubbuteoMatthew Fri 26-Jun-20 22:29:29

In traffic I still stretch my neck and jaw muscles. I move my jaw from side to side to stretch it and keep things moving. I live with it but I'm 95% pain free and jaw position stable for 9 years. Physio should give you some muscle stretching techniques. I never chew gum. I consciously relax my jaw and drop my tongue from the roof of my mouth.

PumbaasCucumbas Fri 26-Jun-20 22:34:26

Definitely the keeping your mouth slightly open thing helps

Join the discussion

Registering is free, quick, and means you can join in the discussion, watch threads, get discounts, win prizes and lots more.

Get started »