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Original poster

Anyone had burning tongue/mouth syndrome? Can you please share your experiences?

49 replies

CasaBevron · 07/12/2011 18:11

I'm trying to get to the bottom of a weird set of symptoms that I have been experiencing for the last couple of weeks. They have intensified this week, and from looking around for info, I think this is what I have.

If you have suffered with burning tongue syndrome, can I ask a few questions?

Did it affect just your mouth/tongue or did you also feel it in your face?
Did certain foods trigger a worsening of the symptoms?
what sort of symptoms did you experience? What did they feel like?

Thanks, I am trying not to give too many details of what I am experiencing as I would like to hear your unbiased accounts!

Please help me get to the bottom of this!

TIA

OP posts:

magso · 08/12/2011 09:09

Hi I have a similar burning mouth and tongue and I do not know why. It worsens with the day. Sipping cool water ( holding in my mouth) is the only thing that seems to bring brief relief. I have treated as oral thrush as I use steroid inhalors and my tongue looks a bit pale but I actually think (3 weeks later) it is not that - and the medication did not help either just made it sting worse. I wondered about seeing the dentist because they are mouth specialists
. If I find anything that helps I'll let you know.

SummerRain · 08/12/2011 09:20

Hey, I've been having this for a few weeks now. It feels like my tongue has been burnt and is splitting along the surface. DP had it for a day and it vanished so I assumed it was a virus but mine keeps coming back.

One thing I will say is ds1 had a sore throat and mouth a few weeks back, then a mouth ulcer. About a week or two after the mouth ulcer he got a coldsore and one site I read said that when you first contract the herpes virus it follows a pattern of throat bug/fluey symptoms, then mouth ulcers and then a few weeks later the cold sores start. I do wonder if I've contracted the virus from him but it's just not progressing past initial symptoms

I'm also guilty of shite food choices though, and have just stopped feeding ds2 after 7.5 years of continuous pregnancy and breastfeeding, so run down is definitely an apt description!

Original poster

CasaBevron · 08/12/2011 11:53

Wow summerrain you must be knackered! I wonder if it is something going round? Ironically, although dd seems to bring allsorts home from nursery, I am the only one who always manages to avoid it! Everyone except me has been coughing and sniffing for the last couple of weeks and I haven't so much as sneezed once! Magso I also wondered if the dentist would be a better bet than the doctor, especially with Nan saying this often occurs after dental work. Seems there are quite a few of us suffering - maybe we should start a support group - BuMSS (burning mouth syndrome support)?!

OP posts:

Original poster

CasaBevron · 08/12/2011 11:55

Er, there were paragraphs it there before I pressed post, can't get the hang of posting from phone

OP posts:

Abra1d · 08/12/2011 11:56

Does anyone find it's sore down one side of the throat for a couple of days and then moves to the other?

Original poster

CasaBevron · 08/12/2011 12:09

I don't have any symptoms in my throat at all, more around the tip of my tongue and lips.

OP posts:

CuriousMama · 08/12/2011 14:09

hope appointment goes ok?

Original poster

CasaBevron · 08/12/2011 15:07

Thanks, have been told to bin the tablets! Dr has put on my notes that I am allergic to aciclovir, but I'm not so sure as the reaction did not respond at all to piriton and it didn't happen every time I took a tablet . So still none the wiser, but she did tell me to take a multivit and come back for blood tests if no improvement in a couple of weeks...

OP posts:

CuriousMama · 08/12/2011 15:14

Hope the multi vit does the job then? And a good diet

Original poster

CasaBevron · 09/12/2011 10:46

Well, yesterday was the first day since Monday that I didn't feel as though I was having some sort of stroke, so that's progress

OP posts:

sweetsantababy · 09/12/2011 10:51

Have you got blisters anywhere else? It sounds like it might be erthyma multiforme wich is oftern mis-diagnoised. If it is, is self limiting and lasts 6-8 weeks but can reaccur.

sweetsantababy · 09/12/2011 10:52

4- 6 weeks

CuriousMama · 09/12/2011 11:22

That's good then.

Original poster

CasaBevron · 09/12/2011 20:31

sweetsantababy, I've just looked that up and the only bit that fits is 'might also affect mouth and lips,' so I don't think it is.

I still have the weird tongue stuff going on, but it's actually a lot less strong than it has been, I wonder if the tablets were making it worse?? Am certain that it was the aciclovir that was giving me the facial symptoms as they've stopped now, but I still don't think it was an allergic reaction as it wasn't happening every time I took a tablet, and it wasn't immediate enough, at least half an hour after taking one. I will have to be content with being a medical curiosity...

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Original poster

CasaBevron · 12/12/2011 19:23

Just a bump for anyone who's interested, but I've been taking the multivit for a week now and DS's sleep has improved to the point where he's sleeping for 4-5 hour stretches at a time. The tongue symptoms have lessened too, although they are not gone completely. So, my guess is that my crap diet was affecting the quality of my milk and DS was not getting what he needed. He's certainly a lot more settled now. It may be a coincidence, but whatever it is it's working for me!

OP posts:

magso · 12/12/2011 20:02

Oh thats good! Have not solved my sore tongue, but am trying a suppliment.

Original poster

CasaBevron · 12/12/2011 21:05

Are you trying B12 magso? That's what the doctor recommended, and is the one that is associated with strange symptoms in the mouth apparently. Hope you get some relief .

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CuriousMama · 12/12/2011 21:07

That's great news How's your diet? Maybe if you feel less tired you will be more bothered eating?

CuriousMama · 12/12/2011 21:12

This looks interesting. Don't think I'll be eating Octopus anytime soon but I do like mussels I didn't realise your body stores B12? I knew it was very important though.

Original poster

CasaBevron · 12/12/2011 21:23

Good grief! Just the thought of caviar, octopus and liver makes me feel . I'm sure I could go for some beef and cheese, though! Tbh, I had never even thought about B12 until the last week or two. Now I know it is my friend I'll be making sure I don't go short again!!

Have been making a concerted effort to do breakfast and it does seem to have helped. However, once it gets to dinner time I'm just not hungry at all. I think if DS continues to sleep better, I'll have more energy and start doing more in the daytime. I've been trying to just rest whenever I get the chance so I haven't been using up much energy and so not working up an appetite. It's the old vicious circle again...I hope when I'm getting out and about more I'll start to get my appetite back.

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CuriousMama · 12/12/2011 21:34

Yes once you're out in the fresh air it should help? I would imagine stress and exhaustion deplete vitamins so it can be a vicious cycle? I know since I've been taking the multi vits for women I feel better.

bounty007 · 12/12/2011 21:45

CasaBevron some of your symptoms sound so like mine that I had to respond.
I have suffered with lots of similar and different symptoms on and off for years (never when Im preg!).Ive been seeing a mouth specialist since 2007 (first referred by my dentist). He has done a few biopsys and tests. Turns out, I have lichen planus and geographic tongue but knew there was more...I thought it was food related. I finally had allergy tests 2 weeks ago and turns out Im allergic to preservatives. One of which is used to coat lots of different drugs, so whenever Ive had a prescription, I always had a bad reaction in my mouth and couldnt complete the course... I saw same consultant on Friday and suggested to him I might also have Burning Tongue, but he would like to eliminate everything else first and has put me on some steroids to try and help clear the oral discomfort up. He has told me not to drink/eat anything hot ie coffee and tea are now out....like the idea of a support group...sometimes Im in so much discomfort that I cant eat for days, which really gets me down...Toothpaste is another one that I cant do (except an aloe vera strawberry flavoured one) as mint is no good on my tongue. I cant ever eat chocolate mints .

Original poster

CasaBevron · 12/12/2011 22:11

Bounty that sounds dreadful . Have you looked at the allergy boards on here? There are people on there who are dealing with all manner of allergies and I have had some great advice from them on dealing with ds's. I would highly recommend them! The problem with burning tongue seems to be that as there are no outward signs or symptoms apart from what the sufferer describes, it's really hard to diagnose. How horrible to have to avoid anything hot - I don't think I could manage without my morning coffee...

OP posts:

hperk26 · 23/11/2018 11:29

I know this post is really old, but has anyone gotten relief from their burning mouth? I too have this but mostly a burning throat. I’m an anxious exhausted new Mom and trying to figure out what is causing this. Thanks.

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