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Burning Mouth Syndrome?

(26 Posts)
greeneyed Wed 19-Dec-12 15:31:56

Anyone have this? - I am at my wits end, two months of very sore tongue, swabs for candida came back clear. I am scared it is this condition and there is nothing I can do about it except learn to live with the pain sad

Would welcome anyone's experience

NanTheWiser Wed 19-Dec-12 17:37:53

Hi greeneyed, I can empathise with you totally - I've had this for about 8 years - not what you want to hear, I'm afraid!

A burning tongue can be due to many causes - notably a lack of B vits, and anaemia - have you had a blood test to rule out any deficiencies?

This condition is usually found in post-menopausal women, and there is a big question mark over what causes it, no-one really knows. Some evidence that it can be triggered by dental treatment ( nerve damage), and also anti-biotics (esp. Trimethoprim).

My BMS started 8 years ago - I was 57, had recently had a tooth extraction, and went to the GP when I had what seemed like a sore throat. He tried 3 different lots of antibiotics, to no avail, and I started getting a bit paranoid that it was cancer. I got a referral to the ENT, who found nothing amiss, but he did mention BMS, saying no-one knew much about it.

I did a bit of research on the web, and discovered it was EXACTLY what I seemed to be suffering from.

I found that it was almost non-existent in the morning, but escalated through the day, and worst at night. Certain things aggravated it - alcohol, coffee and nicotine were the worst culprits, and anything spicy like chilli. All typical symptoms.

Strangely enough, capsaicin is said to relieve it - a few drops of chilli sauce on the tongue, but I never tried that! Some GPs prescribe Anti depressants for it, but I never tried that either. Another remedy is Alpha Lipoic Acid, I did try that, but can't remember whether it did any good (probably not, or I would remember).

The bottom line is, that you learn to live with it, which I did, and although I still have a slightly sore tongue, it's nowhere near as bad as it used to be, and doesn't bother me now.

I'd ask your GP for a blood test to rule out any deficiencies, maybe there is something that can be corrected.

I'm sorry I can't give you more positive reassurance, and hope your problems clear up soon.

NorbertDentressangle Wed 19-Dec-12 17:43:28

Never heard of this syndrome but I clicked on the thread as I've had a few spells of having a really sore tongue for weeks at a time.

Does BMS come and go or is the pain/discomfort something you always have?

BelaLug0si Wed 19-Dec-12 22:58:07

Have they excluded oral lichen planus? It can develop very quickly and the tongue can be incredibly sore.

sipper Wed 19-Dec-12 23:34:55

Doesn't oral thrush give that kind of pain? A friend of mine had it after she'd received bucket loads of antibiotics for pneumonia. Probiotics (the proper good stuff not those yogurty drinks...) - do you have an independent health store you can visit and ask what they recommend? Biocare is a good make. If it is candida like you mention, then there are still things you can try for that too - health store should be able to help with anti-fungals.

noddyholder Thu 20-Dec-12 09:40:22

B12 deficiency? I had it and itbwentbwith the treatment butnitbis also related to menopause hth

magso Thu 20-Dec-12 10:14:13

I have had a sore tongue ( undiagnosed dispite GP visits) for a couple of years and it has got quite a lot better over time. I now use a B12 sublingual B vitamin, take a good probiotic, and alphalipoic acid (a fatty acid I think related to DHA). I do not know what exactly helped - it may just have been time itself. However if I get lazy with the suppliments my tongue gets worse again.

greeneyed Thu 20-Dec-12 13:10:06

Thank you for your replies everyone! I am taking quite a high dose vit B complex supplement so don't think it's that, I;ve had a full blood count come back normal and a thrush swab come back negative. I have not heard of the Oral Lichen Planus and from the pictures I've seen on the web (appreciate they will be extreme cases) it doesn't look like it - that said (TMI alert) I have something strange going on on my perineum which I have been referred for like a hardening ridge of skin which is irritated - could this be related - I had wondered whether it may be lichen sclerosus?

My symptoms do very much correspond with BMS description - morning fine and starts around lunchtime getting gradually worse throughout the day. Yes alcohol coffee and fags aggravate it (trying to cut them all out!) I am 38 so don't think hormonal, it started when I was on a new medication (I thought it was just dry mouth to start with, one of the side effects) got so bad I had to give up the meds but I have been off them for weeks now and this persists.

I had also taken antibiotics and nasal steroids so when the doc said thrush it just all seemed to fit together but that has come back negative now sad - looks like I might have to start getting used to it.

noddyholder Thu 20-Dec-12 17:15:44

It is very related to anxiety in women.

greeneyed Thu 20-Dec-12 17:22:20

Thanks Noddy - it's making me bloody anxious that's for sure!

Goober Thu 20-Dec-12 19:47:17

Have you looked into Geographic tongue?

greeneyed Thu 20-Dec-12 22:13:26

Thanks Goober, I have looked at that but my tongue isn't really marked - the doc said it looks normal confused

greeneyed Mon 18-Mar-13 12:38:30

Just bumping this as I'm at my wits end sad It's constantly painful and now I have a horrible sour taste in my mouth all the time which is really getting me down. More swabs have come back clear. I'm now on gaviscon advance in case it's reflux related but it's making bugger all difference. I've had full bloods and LFts all normal, having them again tomorrow and iron level tests sad

NanTheWiser Mon 18-Mar-13 18:21:41

Hi again, greeneyed - sorry to hear you are still suffering with this awful condition. I'm afraid I can't offer you any solutions, as said in my last post, there is no "cure" as such, although some sufferers get relief from antidepressants. You might try Alpha Lipoic Acid, and see if it works for you - some people seem to think it works.
Unfortunately, there are no tests for this syndrome, I think once everything else has been ruled out via blood tests, then it is the only condition they can come up with!

I wish you some relief, and best of luck!

magso Mon 18-Mar-13 18:46:59

I am sorry to hear you are still suffering. The only encouragement I can give is that after a couple of years of up and down symptoms mine is much better. Trouble is I don't know what helped - because I tried several things at once ( both for this and anothe condition). Has your GP checked your serum B12 levels as some people cannot absorb B12 from the gut so either need injections or sublingual (under the tongue) supplimentation. Grabbing at straws really. I took B12 and ALA (and good quality probiotics just incase the swabs were wrong) - but it might have got better on its own for all I know. I wish I could help! Oh I gave up caffeine too and on on medication for neuropathic pain for another condition.!
Its horrid - I hope you get relief soon!

willyhaschips Mon 18-Mar-13 19:35:50

Can I suggest that I think it may well be candida. I have had exactly the same recently....triggered by Trimethoprin antibiotic. I am pretty susceptible to candida anyway - have had problems in the past. So, I know how to treat myself. What I did was basically follow the anti-candida diet ie cut out all carbs, alcohol, caffeine. Basically lived on live yoghurt, raw and steamed veg and chicken and fish. Drank loads of water and green tea. And most importantly (in my opinion) took caprylic acid and oregano oil supplements and biostrath elixir as a probiotic. I have had excellent results within ten days.

greeneyed Mon 18-Mar-13 20:17:49

Thank you, it really helps just to hear there are people out there who understand smile thank you for the tips willy it is not candida been swabbed a few times it has come back negative

bonzo77 Mon 18-Mar-13 20:28:36

My understanding as dentist is that BMS is largely psychological in origin. That does not however mean it is not real, distressing, worthy of treatment and treatable. I think that a 3 pronged attack works best:
1. Conventional medicine: exploring and treating folic acid, b12 and iron deficiency, candida, lichen planus. Where these are eliminated consideration of use of ADs. Avoiding trauma, including spicy and acidic foods, staying well hydrated, not smoking and a healthy diet.
2. Complementary therapies to alleviate symptoms and address anxiety/ depression.
3. Talking therapy to address anxiety / depression.

Where I have come across patients with this and it is very persistent I would normally refer to a specialist on Oral Medicine for thorough investigation and management.

FWIW I have had vulvodynia, a similar condition with similar causes. I was also cleared of candida etc and the condition mysteriously disappeared when I left my ex.

greeneyed Mon 18-Mar-13 20:37:12

Thank you Bonzo, Gps don't seem to have a clue, last one said he didn't know what to do- do you think it's worth booking in with the dentist to discuss? Can a dentist refer me to a specialist?

greeneyed Mon 18-Mar-13 20:47:26

Should also say I can completely accept that it is psychological , It started after taking ADHD meds which affect dopamine levels (stopped taking them bms remained) i have had other physical conditions affected by psychological state, IBS, irritable bladder, urticaria, etc etc, problem is ut is self perpetuating the symptoms affect your state of mind making things much worse sad

Outofnappies Mon 18-Mar-13 20:47:29

Hello, it sounds similar to something I get every now and then. I treat it with a lotion called Pyralvex - you brush it on the tongue or sore area and it stings but relieves the pain ultimately. during the day chewing gum really helps. And listerine mouthwash. Usually lasts for 3-4 days per episode then dies down, and flairs up again with the next cough or cold, think it is vitamin B deficiency.

greeneyed Mon 18-Mar-13 20:57:45

Thank you outa, i have been taking high doses of vit c, have had this for about 6 months now. It sounds pathetic but I'm desperate sad

greeneyed Mon 18-Mar-13 20:58:08

Should say vit B

bonzo77 Mon 18-Mar-13 23:08:08

Greeneyed, definitely see a dentist. She can refer you. GPs are not experts with mouths. Like we are inexpert with general medicine.

greeneyed Tue 19-Mar-13 07:37:13

Thank you Bonzo, i am going back to see my GP later this week, will book in with dentist if no progress made.

greeneyed Fri 19-Apr-13 10:23:48

Been diagnosed with this now after all blood tests came back clear. /the doctor recommended Amiltryptalin but I don't want to try that as I am on two other meds for my "brain" Fucksticks. Want to cry but best pull up my big girl pants and learn to live with it!

Doc has said she will do some research and refer me to a specialist (oral/facial surgeon?) who she said might just confirm the diagnosis but may have some other ideas. Will look into the suggestions here and go see my dentist for another view. Thanks everyone

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