Horrible burning pain in mouth and below jaw.

[Devilscupcake]

I recently posted that I've been having a worsening of symptoms lately and my recent lab work indicates that I'm a little undermedicated and that my Tgab antibodies have gone from 4.5 to 247 (I'll include that labwork). So, I've been feeling bad for weeks, and then I started having a full feeling in my neck, and then this last Friday, I started having burning pain on the roof of my mouth, alongside the gums on my left side, top and bottom. Then I started having a lot of pain below my left jaw, as well as some nerve pain on my chin, under my tongue and some aching up to my left cheekbone. My left jaw hurts, too, but that's not as unusual. It's worse at night and so bad I've been tempted to go to the ER. I went to an emergency dentist just now, and he didn't see anything wrong. Has anyone else ever had these symptoms? I've read that burning mouth syndrome can accompany autoimmune conditions. Thanks in advance!

[Fruitandnutcase]

Yes, I think it does go with autoimmune conditions. Unfortunately I have a load of them, I’ve got Graves but in remission plus several others. Once you get one they invite all their friends to the party 😟

Can’t help about the antibodies but I get burning mouth syndrome and it is awful - well you know what it’s like. I get what feels like cold sores on the roof of my mouth - always in the same position - which I’ve been told are aphthous ulcers. My gums hurt along the tooth edge. I get swollen glands just under my tongue, they come and go for no particular reason. It’s weird and debilitating.

I’ve been seen by a dental consultant at our local big hospital which has ruled out anything nasty so that’s good. The one thing he did was blood tests for vitamin deficiencies - I think B12 in particular but I’ve used this site for years so my vitamins and minerals are all good so that wasn’t the cause. Your test results are to small for me to read and I’m not sure B12 is listed but it would be worth checking that at some point.

I deal with it by using a really gentle totally additive free toothpaste - I use Himalaya botanical from Amazon. I use Gengil mouth wash- it is alcohol free or else I rinse my mouth out with a salt water solution which also helps, I use good quality either sea or Himalayan pink salt flakes. I also cut out chocolate which I have found doesn’t help it at all.

Good luck with it, burning mouth doesn’t sound like much but boy is it painful.

[Devilscupcake in reply to Fruitandnutcase]

Thank you so much for replying. The pain got worse, so I went to the doctor this morning (yesterday the emergency dentist--two trips out of the house since March 11th!). She gave me steroids, but they haven't helped yet. She's thinking tmj, temporal arteritis, or something to do with the trigeminal nerve. She did some lab work, and I suppose we're going to go from there. You made me laugh when you said that about the autoimmune party--some party!! But that's what it's like. I'm going to try to be strict about what I eat, although I'd hate to give up chocolate. But, nothing is as bad as this (so far). I really appreciate your tips. I'll be looking up the toothpaste and mouth wash on Amazon. Best of luck to you!

[Fruitandnutcase in reply to Devilscupcake]

Years ago I went to the doctor for face pain. My doc prescribed steroids while she did blood tests for temporal arteritis she said that if I was her mother that’s how she would hope she was treated. I thought that was such a nice thing to say. She phoned later in the week to say the blood test was fine and to stop taking the steroids.

Yes, unfortunately autoimmune conditions seem to like to hang out together.

Good luck to you, hopefully it’s not TA or even TMJ giving up chocolate is very tough but I think it would be preferable to either of those. I can eat a certain amount but if I really binge then my mouth let’s me know😟

[Devilscupcake in reply to Fruitandnutcase]

It makes such a difference to have a caring physician. I hope she's still your GP.

I think that's why the nurse gave me Prednisone, too. Although I guess it helps with other inflammatory conditions. I think it must be helping, cause I was able to sleep for hours without taking any pain meds. It's back to business now, but it was good to have a break. 😄 I'm glad you can eat at least a little chocolate!

[Fruitandnutcase in reply to Devilscupcake]

I know, I thought it was such a lovely thing to say - your u couldn’t ask for anything ore could you? . Alas that doctor has moved on someone somewhere must be lucky and have a great doctor.

Glad the steroids worked and you were able to sleep 😊

[Devilscupcake in reply to Fruitandnutcase]

I always feel abandoned when a practitioner moves on! Thanks so much. Sleep makes such a difference.

[cyberbarn]

I recently had a long chat (thank goodness for Covid-19 and telephone consultations!) with an ENT whom I was sent to because of persistent reflux. I have had similar symptoms to you, sometimes they get better, then they come back again.

One of the things he said was that the way the nerves work in the neck is that where you feel the pain might not be where the pain originates. That doesn't really help pinning things down, but it did help me get things into perspective and realise that the arthritis in my spine might be causing pain somewhere else in my neck, and that when there are several things going on at once, and some of those things cause inflammation, it is really hard to know which pain is caused by what!

[Devilscupcake in reply to cyberbarn]

Virtual visits are the way to go! I got my temp checked before they let me in the dr's office this morning, but we all know how much good that will do! I'm going to wear gloves next time, because as soon as I got outside, I took off my mask, and then I touched my nose. Argh. It's a hard habit to break. That's interesting about neck pain. No one has mentioned that to me, but I'll be sure and bring it up if I ever get a scan, so I can ask for a bigger area to be checked. It's all so complicated and difficult. Thank you for your reply, I really appreciate it.