What do I do now? It's a health one.

[Coldcoffeekindamorning]

I have been suffering with TMJ disorder for years. I have tried pretty much everything and spent x73848949494 pounds on trying to fix myself. I started seeing a specialist physio at the start of the year and it helped a bit over the summer but it is just getting worse again. I am so fed up and I dont know what to do.

I came down with some sort of virus/chest infection around 4 weeks ago, it aggravated my asthma and since then the pain has spread to my neck, shoulder and back. It is constant and even paracetamol and ibuprofen won't take it away completely. The GP treated me with steroids, two rounds of antibiotics and a chest xray but then told me that it's a virus and to go away and come back if I get worse. My cough has gone but my lungs don't feel back to normal, I am sooo fatigued and I can only do so much before I have to stop and lie down. The GP won't listen to me, I pretty much begged them to help me and they told me to go away, it's a virus and only to come back if it gets worse.

What am I supposed to do now? I am so worried that there is something underlying that they are not bothering to investigate. The GP didn't even take bloods to check. My auntie had stage 4 lung cancer and an xray didnt pick that up so why are they not seeing if something else is wrong? My friend had neck pain and they ignored her until the pain got so bad and turned out she had breast cancer. They both died in the past year. How can I get the GP to listen to me? I know that I am anxious but I just need to be better and no one is helping me and I don't know how to fix myself. What do I do?

Theres a lot to unpack here.
what are you concerned about?
You need to get things in order and tell the GP
•this is what I’m worried about
•these are my symptoms
•this is what I’d like you to do

I've tried to tell them and I just get put on waiting lists and the appointments never come. They don't listen to me.

I know it isn't always possible, but can you book to see a different GP in the practice. A different person may see things differently and consider it appropriate to do other tests/a referral.

As the pain has spread can you go back to the physio - they may be able to suggest something that will ease the pain,but may also be able to do a referral elsewhere.

In our health board you can self refer for physio. For certain issues, the best way to get a specialist referral is through physio rather than the gp.

Contact your GP surgery and request a review under Jess’s Rule. It’s an initiative by the NHS to consider afresh cases where the current approach hasn’t worked.

There is a nasty virus going around and I'm sure it will have aggravated your TMJ.

I have suffered badly from TMJ. Massage helps a bit but the only thing that really relieves it for me is masseter botox - have you tried it?

This is shocking advice. Apart from anything else is likely to be the wrong strength, length of course and even type of antibiotics.

And if the GP has said it's viral then antibiotics will not help anyway.

It's bad that they're not investigating further and OP needs to keep chasing that.

My TMJ is always so much worse when I’m stressed and anxious so I think it can be a vicious circle. I wear a mouth guard to help with teeth clenching and try my hardest to get a good nights sleep. Not always easy I know. Have you tried seeing an osteopath for the pain?

The dentist can also refer to maxfax, mine did.
And yes to Botox in the masseter muscle, have you considered that OP?

I am a Dr. If it is a virus, post-viral coughs can easily last 4-6 weeks after the resolution of the infection. In patients with asthma, it can sometimes be a bit longer. Usually, there is little we can do about it. Some patients with asthma might require their inhalers temporarily stepped up if the infection has led to an exacerbation of the asthma, but otherwise they just have to wait it out.

You have had antibiotics which have not helped- I am guessing because of this and possibly because of how your lungs sound when they auscultate, they have concluded you have a virus. It’s unusual for a bacterial infection to still be active 4 weeks later without the patient being very unwell (I appreciate you feel awful but in clinical terms yiu don’t sound significantly unwell), so I think even if it were bacterial you are likely to be over the acute infection phase. It is common to feel tired, achey etc after an infection, especially if it has been one of the more virulent ones. In short, I can see why your GP has not rushed to do further investigations at this stage. I understand you are worried, but I don’t think they are necessarily wrong not to have jumped into further investigations at this stage.

That said, if you still have a cough after 6 weeks, go back and ask to be reviewed again. Right down yiur questions and concerns as a prompt- or even show the gp yiur questions. Perhaps ask to see a different GP.

There are 3 doctors at my GP and I have seen them all about the TMJ. They just don't listen!

I didn't know you could do this so thanks for telling me. I do want to do this but I also feel scared to do it because they have treated me like this for years and just brushed me off, making me feel like I am being a silly nuisance.

I only developed asthma about 3 years ago. I again had a persistent cough that lasted about 8 weeks, was told that it was just the after effect of covid, I was a mum, one virus after another until finally they gave me antibiotics and sent me for a chest xray. After 2 more round of antibiotics I was told it was probably viral and to go away and I would eventually feel better. One week later I was admitted to hospital with oxygen levels of 84%! I even said this to the dr when I saw her last week and she just reiterated its a virus and they cant do anything. No bloods nothing.

With the TMJ I actually think they just dont think they actually know what to do so they fob me off to this and that all the time but nothing comes of it. I am so exhausted from it all.

It takes longer than a month for your lungs to feel better after a bad infection. Go back to the gp if you feel you need another course of antibiotics to make sure it’s gone.

re tmj unfortunately unless you go and see an expert then it won’t get better on the nhs. I see my osteopath and as part of that session he releases my jaw and massages the muscle which is agony but better since I also learnt how to do it myself. Has anyone taught you how to stop clenching your jaw? There’s a knack with sticking your tongue on roof of your mouth and sucking it on there firmly and concentrating on keeping it there 24/7 and it becomes habit and then one day you wake up with your tongue stick to roof of mouth and no jaw pain! You can’t clench your jaw while you are doing it and it relaxes it which is why it’s taught by tmj specialists. Unfortunately I haven’t found an expert like this in the uk it was overseas.

the other thing to do is Botox in the masseter muscle? Has anyone suggested that?

TMJ
Botox to reduce the size of the masseter muscle.
NTI mouth guard. These are different to the traditional bite guard. The NTI fits over your top or bottom front 4 teeth and stops you from biting & clenching.
no hard/chewy food for a while.

Sorry this was a reply for @Dontevenlookatme

It's the one thing I haven't tried. I looked into it and it seems that it doesn't last long and then you just need to pay a huge amount every so often? I read it's not good for long term use either.

Have you been doing it for long? The physio also didn't recommend it but then I guess it would leave him out of pocket too so...

No, I've not heard about this. Have you tried it?

Yes, I understand this but if you read my previous post about last time they told me to go away and I ended up in hospital then you'll understand my frustration.

I'm also a bit frustrated about being told to go away and just live with this. I don't understand why healthcare needs to be reactive, why can't they check to see if I need to strengthen my lungs after all this or something else to help? Why can't they just send me for a proper scan instead of me having to make appointment after appointment tryinf to get help? Surely God knows how many years they train to just prescribe antibiotics is mad to me. Instead I just have to live with it and feel like a constant pest.

I have another friend who went to the GP complaining of fatigue etc and was sent away with the post viral diagnosis, had to just deal with it for months and then not long after was diagnosed with breast cancer. She fortunately survived but it's awful that they just brushed her off. It happens all the time, they say "oh it's just one virus after another, it's post viral fatigue, oh you have kids so your husband is obviously not doing enough to help, you should rest while somehow slow your life down" and I'm sorry to say that I just think GPs are pretty useless, all they do is prescribe antibiotics and then tell you to go away. No wonder they are struggling when they don't do anything to help and people just get more unwell and have to go back again and again like me just wasting more appointment time.

My physio taught me some breathing exercises to relax my jaw and it does help but like I said it's not a miracle cure. Can I ask who and where you saw your specialist?

I paid a ridiculous amount to see a private dentist re my TMJ and he said that the guard wouldn't make a difference. I try not to eat hard or chewy food, I basically live on yoghurt for breakfast, omelette for lunch, noodles for dinner.

I have looked into botox but it seems there is no end to the treatment and you have to pay hundreds of pounds every few months. I can't afford that.

Hi. Unfortunately isn't cheap. I've been doing it since 2021 and it does need doing a couple of times a year. I haven't noticed functional issues but it has changed the shape of my face - for the better. It has also stopped some of my dental issues from teeth grinding.

So sorry you’re having this experience

You need a full blood count. The GP should’ve suggested that. Some of them are just crap. Please mention about your aunt and the lung cancer.

Do not let them pass it off as anxiety or neurosis or whatever.

With the jaw, yes, I have broken a tooth from this. I would recommend Botox. I can’t say how frequently you will have to have it. For me, it depends what’s going on. I think I had a gap of about a year after I had it initially.

it’s really crap that nobody told you that before because my NHS dentist said to me that that was the absolute first thing to pay for if I was going to pay for something. I think he was right. I have since moved and I don’t have an NHS dentist any more… Interestingly the private one was quite keen to refer me for all sorts of things and was not happy when I said to him “ it sounds like I need another round of Botox”.

I mean, hey, I’m not thrilled about it either, but it does seem to provide relief.

i’m in Essex, which is obviously full of clinics that do cosmetic things… and one of my neighbours actually said to me “ why are you worried if you end up needing it twice a year? I know people who are having it twice a month for cosmetic reasons.”

It’s the affordability that’s the issue of course but I can’t say I’m thrilled about having a poison injected into my face either.

editing to add - I do go to a dentist for it. I am not going to a cosmetic practitioner. It’s just unfortunate that my dentist doesn’t do it.

But I ended up finding this dentist through emergency when I broke my tooth….

I’m not a GP, but they aren’t all useless. I’m not saying all GP’s are perfect or that mistakes are never made, but most are competent and doing their best in a system under significant strain.

I understand that in the past you’ve has unsatisfactory experiences- but it doesn’t follow that you need to be treated differently or in a certain way every time, going forward. It isn’t that unusual for patients to think that if they have been unwell/required admission with something like pneumonia that they want to try to prevent that again- and I do understand why- but the reality is you have to assess the patient each time. E.g. just because you have been admitted with pneumonia once, does not mean every subsequent cough requires antibiotic treatment, or that every cough is (or will become) pneumonia- but because patients fear being that unwell again, they will
push for the simple viral cough to be treated differently. The fear is understandable, but it doesn’t mean clinical judgment should be based solely on one past illness.

As to why can’t you just have a scan? The reason is that your symptoms- as you have described them- do not (currently) suggest a scan (I assume a CT scan) is required- if the cough persists a chest x-ray may be appropriate. It is not usual to jump straight to CT within weeks of onset of a cough- there would usually need to be some other symptoms or clinical signs accompanying the cough for that. I’m not quite sure what test would tell you that you needed to “strengthen” your lungs.

The NHS has to make sure that resources are maximised. Performing an CT scan in everyone who has a cough lasting more than a few weeks and/or feels fatigued after an infection is not supported clinically and as such would be a huge waste of resource. It would also mean that patients who do need scans will wait longer.

You can get a scan if you are prepared to pay for it, whether or not it is clinically required.

try
1 TMJ physio exercises - do them in the mirror https://www.ouh.nhs.uk/media/qcxidm43/69966tmj.pdf
search for TMJ excercises
2 see dentist and get a mouth guard to stop clenching at night ( this didn’t work for me as I couldn’t sleep with the mouth guard but you could try)
3 ask dr for amytriptalyne tablets - these reduce nerve pain, relax your body at night and help you sleep - this reset my jaw
4 osteopath will show you excercises including how to massage your inside mouth muscles to fix TMJ issues
5 is there something in your life causing you stress or worry. Mine was my job and an unreasonable boss. Can you reduce your stress? Try meditation or yoga?
good luck!