Burning Mouth Syndrome

Behind my front teeth I get a nasty metallic sensitive taste especially when my tongue touches my teeth. It is not bad enough to call a pain but is very obtrusive and annoying. I usually am not aware of it first thing in the morning. I’m not sure if brushing my teeth sets it off or if it is the first coffee of the day. I have started delaying brushing my teeth. I have had various investigations at the dentist including a whole head scan to no avail. I have a multinodular thyroid growth which is currently symptom free but the doctor wondered if pressure from this could be affecting the nerves in my mouth but she said the treatment would be be worse than the condition!

Rutheleanor - can I ask what your symptoms are and why is it afternoons and evenings are the worst?

MrsEggy i too was diagnosed after having blood tests for something else, thyroid actually, as my hair was thinning slightly even then, but i was about 65 i think, [thyroid was ok] cant remember exactly, i have looked at the Haemochromatosis society, and the facebook one which i joined but found my posts were coming up on my normal facebook page and i didnt want it spread all over so left
My first ferritin reading was 950, never been anything like that since

I have had this now for a couple of years.
Two tips: chewing gum works very well for me as a distraction
At night I put a vocal zone pastille in my mouth and keep it there all night. It sticks to the roof of my mouth. They are small so there is no danger of choking. This helps a lot.
I am mostly troubled by this in the afternoon and evening. If I am out and about or chatting with friends it is much less noticeable. I live in hopes that one day it will just disappear as neither the doctor nor the dentist can help.

valeriej I'm sorry to hear of your problems - I was diagnosed about 5 years ago by accident after having blood tests for another problem. Looking back I'd had several vague ailments which were never properly diagnosed, possible gall bladder trouble and things like that. I was then 77 with a ferritin of 1470. It has now come down with venesection and is about 50. Apart from the burnt tongue I had very few symptoms, unlike some other sufferers. I have found the Haemochromatosis Society, and in particular their Facebook page, very helpful.

MrsEggy thanks for that,i sometimes wonder if i really do have Haemochromatosis, as apart from when i was first diagnosed, my ferritin level has been very low, and at the moment is only 74,
I have had very few venesections all the time i have had it, one Consultant even questioed whetherb i had it or not,i dont have the problems my twin sons have which is a lot of joint pain, stomach pain and various other health problems
I get a bit annoyed sometimes that i have to keep having these blood tests, they seem to want me to make sure it doesnt get over 100, but i am currently taking feroglobin, because since my ferritn is so low, [even got down to 8] my hair has been thinning a lot,
My sons ferritin though is through the roof in the 1000s
How are you, do you have many problems with it?
Do you keep well in general?

This sounds a terrible affliction that really interferes with your lives. It seems to link up with certain medical problems.

I thought I'd be having venesection a few years back when a blood test showed polycythaemia but only borderline. After another test 6 months later there was no sign except for an impaired glucose tolerance which remains the same.

Blimey all the things that go wrong.

Valerie I had this a few years ago. I also have haemochromatosis (iron overload) and after a lot of research I found the two can be linked. With some trepidation I showed this to my GP and to my surprise he told me to show my consultant who was also interested. As my iron levels were reduced with venesection the problem faded away.

I had something like this a few years ago, my Dr didnt know what it was it only lasted for a few weeks, but i dont think in my case it could be down to pernicious anaemia as i have an overload of iron

Katyj, l would check if your b12 results were low. Sometimes they can be low but still in range so they come back 'no action needed'. Also if your stomach can't absorb b12 then tablets wont do any good. Don't mean to alarm you about this but b12 isnt included in a Full Blood Count blood test. Just a thought as my tinnitus is down to PA.

Hi, no I haven't had my b12 checked unless it was included in the tests at the hospital, but I have read about b12 being good for tinnitus, so have been taking a tablet now for about a week, will let you know how I get on.I was thinking about trying an antidepressant for both the tinnitus and bms as a last resort, it does seem to be getting me down at the moment, but there again I'm feeling tired and run down.Hope you have better luck .

This sounds horrible!
I haven't any experience of it, and hadn't heard of it until this thread.

Sending best wishes to you all.

I am in the process of tests etc though dental hospital and doctor. As I said before I do not have Burning sensation at all just a horrible feeling my mouth always has debris in it and I keep chewing it. I know it sounds absolutely disgusting but living with it is truly depressing. However I'm not holding out much hope for a complete cure but hopefully someone will be able to at least 'manage' my problem. I will report once I have returned to dental hospital. You all have my sympathy.

I have had this problem for about 20 years and probably for the rest of my life. At best it is a tingling at the front of my tongue and roof of mouth. At worst it gets very sore. My sense of taste has altered and as I was a super taster it’s very depressing. I don’t eat acidic fruit any more, only bananas and mango. I have had many tests with no results. The medics don’t know what causes it. It’s obviously damaged the nerves somehow.

Hi Katyj and Leavingnormal, so nice to hear from other sufferers. As l may have said previously, l first had this in my early 30s, then again 15 years ago, both at times of stress, but this time no apparent reason which is strange. It seems worse this time unless its because l'm older and not as physically fit. I'm into the 5th week now and for a brief few days before my appointment the pain wasnt so intense, even on the day when l was quite stressed it wasnt too bad. But yesterday it was back to square one with the soreness and horrible taste. Katyj have you had your b12 checked as PA/B12deficiency is a cause of tinnitus, l get that too! I have PA, atrophic gastritis and Hashimotos as well. I wasnt stressed when this started but l am well and truly now. And the worst thing is when they tell you there's no cure and no treatment, it makes you feel so desparate. When the ENT clinician told me there was no sign of oral cancer it was a relief of course but the fact remains l'm still in pain. Still waiting for the appointment at the Dental Hospital but hope is fading and l need to find another approach. My diet is suffering as l can't seem to eat the little fruit l was able to before, blueberries and bananas or drink squash. I dont drink alcohol or coffee and have never smoked. But l'm starting to feel afraid that any food l put in my mouth will cause a bad reaction so l'm getting more and more limited as to what to eat and virtually living on chicken soup and dry biscuits. Please stay in touch, its good to talk x

Hi

I get a burning mouth but not constant. It comes and goes. Can last a day. I have found icecream to be a help. Cools my mouth down for a little while afterwards. Like Tiffany, it doesn’t burn when I eat, either. But I won’t feel like eating much of anything except icecream and, I nearly forgot, partially defrosted frozen strawberries/ blueberries.

I also get sensitive burning skin. It feels like I’ve been sunburned. That is more persistent and can be triggered by certain foods, the temperature, (I’m much more likely to get it in summer), and some medications. Plus I believe anxiety will trigger it too, (those times when I’m feeling overwhelmed by stuff). It can be a challenge to find clothes that are soft enough not to irritate my skin. Cool showers and sitting in front of a fan helps. And cool air conditioning nearly always stops it.

In my case, the original trigger to these burning sensations was an adverse reaction to a medication, I believe.

As I get older more stuff happens to me, medically, naturally. I was talking to my sister about having challenging medical conditions and we decided that, most importantly for us, we have to face the challenges with grace.

I can’t control all health problems but I can control how I act about them. With grace. I don’t always manage the grace part but I aim for it.

Hi, another sufferer here.The dentist referred me to the dental hospital two years ago, they checked my mouth and glands very throughly, did blood tests for vitamin deficiencys, all came back clear, the only thing she could recommend was cbt therapy or anti depressants, I said I would persevere. The only thing I can think of that may have set it off was I had a Mri scan as I also have tinnitus, that also came back clear, but the bms started very shortly after, I can remember the day it started suddenly.I also have a bad taste in my mouth, which is much worse at night, I wake up for a drink once or twice.I also have a clicking jaw, and I can't help but think these things are all connected.It is not as bad as two years ago, but wish it would do one along with the tinnitus.

I'm just bumping the subject of BMS in case anyone new is reading and experiencing this. 4 weeks on and l'm no better. ENT consultant has given me the all clear re oral cancer. Now waiting for referal to Dental Hospital but reading all the info l can find there doesnt seem to be any treatment for it. Just hope it gradually eases off. Thanks for listening x

I had this or something similar a couple of years ago, at the same time I had a few of the tongue taste buds go into overdrive, a couple on the tip of my tongue looked like long stemmed toadstools.
Since having bowel op it has not returned so did wonder if it was digestive system related.

There is a facebook support group called Burning Mouth Syndrome UK which you can join and l did, and its good to talk to other sufferers but l found it a bit depressing reading some of their stories. Today l feel more positive. If l can get on top of the pain it will be something. Another weird condition that nobody's heard of to add to the list. Feel like l'm collecting them!

That sounds truly grim!

tiffany - Wow - can't believe this thread. Was at Oral Consultant on Tuesday as I've had a problem with my mouth for the last 10 months and whilst she told me I DIDN'T have Burning Mouth Syndrome she did say everything else I have wrong with my mouth comes under the same category. It is just truly awful. I got a 2 page double sided information sheet re Burning Mouth and have to say although my mouth hasn't got the 'burning' feeling everything else seems to be the same. Reading the information I don't think they can cure it, they can help manage it though and there are several reasons that you can get suffer from this horrible problem. She took lots of bloods from me, gave my mouth a good examination and found it to be healthy it's just everything that associated with the feeling I have in my mouth that's truly given me cause for concern. I have to return in December after she contacts my doctor and for blood results to confirm or otherwise if I may have other problems which is contributing to my mouth problem. I truly sympathise I can tell you, This is driving me crazy. Hope you get something sorted soon.

Thank you all so much for the replies and especially the link to the previous ones. I am 72 now and l believe l had a bout of this in my early 30s but it was never diagnosed and gradually eased after about a year. Then 15 years ago for no particular reason it started again. This time l was sent to an ENT consultant who after many blood tests diagnosed Pernicious Anaemia. I started treatment for that and again the symptoms disappeared. I believe it can be related to low vitamin b12.
This latest bout has again come out of the blue. I felt so ill with it yesterday l didnt want to eat although strangely it doesnt hurt when l'm eating, only when l stop. I would love to hear from the ladies who posted on 2013, especially Sheena, as to how theyre coping 5 years on. I have a blood test next week for iron levels plus a dental and drs appointment so either one could refer me. But at the back of my mind l know its BMS and this alone is already making me feel depressed. But thanks again and please add more comments, its good to know l'm not alone xxx

I wonder if it is oral thrush? I get this from time to time. ( double whammy- dentures and inhalers.) live yoghurt does the trick, or oral Daktarin from the chemist.

Hi Tiffaney, I don't have any experience of it but a colleague of mine had it after dental surgery, and it stopped or cleared up after about a year.

I remember that there had been a previous discussion about it. Here is the link to the posts from 2013:

www.gransnet.com/forums/health/1198975-Burning-tongue-syndrome

I'm really sorry for anyone who has to deal with this condition, it must be very frustrating.