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Burning Mouth Syndrome

(30 Posts)
MsChe Wed 27-May-20 10:40:04

Hello everyone. I hope you and your loved ones are all doing well.
I guess if you are reading this means you have this God forsaken disease. It's been a living hell for me for the last couple of months and because of lockdown I only got to speak to a specialist yesterday.
A little background about myself. I am a woman of 53 who started menopause 3-4 years ago. I have suffered with migraines all my adult life and have relied on pain relief medications for as many years. I might be addicted to them. I don't know. Anyway, I am pretty sure I have done some damage to my liver.
So, let's talk about BMS. It started just before lockdown when I admit, I was having a lot of anxiety attacks for a good 2-3 weeks after lockdown too. Some may say this could've been a contributory factor. Others might say it's my age and the menopause. Apparently mostly women over 50 suffer from this. Others might say it's nerve damage.
Others might say it's vitamin B12 deficiency or overload of iron etc etc...
Whatever it is let me tell you it's debilitating and depressing. Especially now that I know there is no cure.
Here is a LONG list of my symptoms:
1. Severe dry mouth
2. Scalding sensation or burning of my tongue and pallet.
3. Lack of saliva
4. Mucus/gluey like saliva
5. Sore gums as a result of the above.
6. Metallic and salty taste in the mouth
7. Altered taste
And here is a list of what helps:
1. Chewing sugarfree gum. Relief is temporary (RT)
2. Sipping water. RT
3. Sucking on lozenges. RT
4. Eating. RT
5. Breathing through the nose is my only alternative as breathing through the mouth is almost impossible as I get instant dryness.
6. Sleeping. I cannot feel the burn whilst asleep. So I guess when all my senses shut down for the night so does BMS.
What caused it apart from possibly anxiety? No clue whatsoever. I have also had some sinus issues in the past and have been using a nasal spray called DYMISTA. This has a dry throat side effect so I have stopped it for the last 5 days or so in the hope that this was the cause. No change so far.
I am also going to see this specialist on Monday. I shall keep you posted if anyone is interested.
As a last mote, if anyone is suffering with BMS let me tell you I completely understand what you are going through. Good luck to everyone and God bless!

tanith Wed 27-May-20 10:46:06

Had this on and off for a few years nothing really helps it just comes and goes, at the moment I also have a couple of mouth ulcers I’m just off to see my pharmacist for something to soothe them. Both GP and dentist have said it’s one of those things that’s hard to find a cause and neither was much help. If it’s really bad I suck ice chips or a water ice lolly.

MsChe Wed 27-May-20 11:23:03

Dear Tanith,
What a nasty thing to live with. I know, no one seems to be able to help. How long did your longest bout last? Do you suffer from anxiety? Anxiety is root of many medical issues and I am a natural worrier, so lately I've been doing yoga and listening to some mindfulness videos on YouTube which help me. Your mouth ulcers might be due to that.
And I've just read avoiding oranges, orange juice, citrus in general, tomatoes, cinnamon and mint help.
I hope you feel better soon and thanks for sharing.

Oopsadaisy3 Wed 27-May-20 11:49:03

We had a builder who had blocked saliva glands in his mouth
( or wherever they are situated) he had an op to sort it out, his symptoms sound a lot like yours .

MsChe Wed 27-May-20 11:53:36

Did it work @oopsadaisy3
I would love to know please. And thank you for sharing.

Toadinthehole Wed 27-May-20 12:03:18

I think it’s most likely your menopause. It is a symptom. One of the rarer ones, but a symptom all the same. I get a really dry mouth now since menopause, and it makes my throat sore. Not quite the same I know, but I feel your problem could be the next step. I do have a friend however, who is going through this now, with all the investigations. It started when she had her coil removed, which would have set off a change in hormone levels. She doesn’t have closure yet as far as I know, but I’ve only spoken to her twice since lockdown. Next time I speak to her, I’ll ask how her mouth is. Are you sure the Dymista is causing your sore throat? I use that for allergic reasons, not regularly, maybe three, four times a week. On the other hand, maybe that’s why my throat gets sore! I hope you get it sorted soon, anything in the mouth, well, the neck up really I always think, is horrible.

MsChe Wed 27-May-20 12:43:47

Toadinthehole
I also think it's the menopause alongside the stress and anxiety I suffered recently. I am not taking any HRT as I am against it for cancer related reasons and my menopausal symptoms are very mild thank goodness. No, I am not sure if the Dymista caused this. I was told to use it twice a day, everyday. I stopped it as a process of elimination once I read the side effects. And yes, possibly your sore throat is caused by it. I used it because I had crusty septum hence congestion. But for that you can also use a douche by Neilmed.
Anyway I would appreciate any feedback and hope that this chat is helpful for some. Thank you for sharing and totally agree that anything in the mouth is bad. Unfortunately I love chatting with my friends especially now during lockdown and now it's just texting since I can't really talk without discomfort.
Take care and God bless!

Toadinthehole Wed 27-May-20 12:57:06

Aww, God bless you too🤗. You and I sound like we have the same nose!! I have a condition which has caused me to have nose bleeds for last 40 years. After years of cautery/ laser etc. I now have a perforated septum....which crusts and itches, hence the dymista. The Meilmed rinses have been really helpful over the years, but sometimes start a nosebleed. Of course, these are worse since going into menopause! Typical. I like talking as well, so much easier than all this emailing etc. I’ll talk to my friend and pm you when I can. Take care.

MsChe Wed 27-May-20 13:09:02

Toadinthehole
Just an afterthought! In case you have difficulty breathing at night and for those who suffer with BMS, I find that nasal strips that help with snoring, really really help. In fact I can't sleep without them at night and wish that I had discovered them years ago when the dry septum and crustiness first started. Anyway good luck and speak soon x

Toadinthehole Wed 27-May-20 13:12:17

Oh thank you, yes, I don’t really breathe through my nose at night, unless I’ve managed to clear it with a rinse or the spray, so I may try that. Yes, speak soon🤗

Shrub Wed 27-May-20 13:30:27

I’ve suffered from this for about 20 years and I am convinced it is linked to my hiatus hernia and silent reflux. But the medics don’t agree!

MsChe Wed 27-May-20 14:22:58

Shrub
I am so sorry to hear that. I can't even imagine living with this condition for much longer but slowly I am beginning to come to terms with it and I think the sooner I do that the sooner I can get on with my life.
If you are convinced about your silent reflux then there are things you can do and I am sure you have already made those changes to your diet and lifestyle. I don't know about the other condition. Since you have lived with this nasty condition for 20 years maybe you can share some tips please.
Take care and thanks for sharing.

Oopsadaisy3 Wed 27-May-20 14:24:37

Msche the builder hadnt long had the op, we were his first job.
He said though that he at least had some saliva in his mouth, but we didn’t speak much about it, he was still sore but he said that to him it was better than before.

MsChe Wed 27-May-20 14:54:20

Oopsadaisy3
WOW! Thank you. It's something to consider. Really appreciate your feedback. Thank you!

Katyj Wed 27-May-20 17:39:28

Hi, I have this horrible condition. There is no cure unfortunately, I’ve seen a specialist at the dental hospital, had blood tests and saliva tests, everything came back normal. It does come and go, depending on how stressed I am ,currently it’s not too bad 🤞Good luck, let us know what the dr says.

MsChe Wed 27-May-20 18:49:50

Katyj
This is exactly what I am afraid of. The results all coming back as normal. It's a nightmare just knowing that there is no cure. I will definitely keep everyone posted after my visit. Stay safe and thanks for sharing.

Flutterby1 Wed 27-May-20 21:32:40

Hi MsChe I have had this condition badly couple of years ago. All your symptoms ring a loud bell. I would like to add that ice lollies and ice cubes made in to tiny ice lollies helped.
It is a dreadful thing. Had many many tears with this so I sympathise. Mine lasted about 4/5months. I can sometimes get little twinges of it through stress.
Take care all flowers

gillybob Wed 27-May-20 23:47:03

I am suffering too l I think mine is a result of an infection in a failed root canal but not so sure . I’ve had several lots of antibiotics but none that make any difference ,

My teeth, gums, tongue, the insides of my cheeks and the roof and pallet of my mouth are permanently on fire . I have to let me tea cool before I can take a sip as the soft tissue is so red and inflamed .

Sunlover Thu 28-May-20 00:19:06

I am also suffering with mouth pain. I was in the middle of root canal/ crown work when we went into lockdown. Over last couple of weeks gums, pallet and roof of mouth very sore. Managed to speak to my dentist and picked up two different antibiotics. Hope these will sort the problem. I did suffer with this a couple of years ago and it disappeared when I started having B12 injections. As I’ve had to stop these at the moment I’m wondering if there’s any link.

Sheena Thu 28-May-20 07:19:02

Hello MsChe if you put Burning Mouth Syndrome into the search bar you will find there have been quite a few posts re this awful problem. Some of them started by me. I have had this BMS now for a very long time and for me, now, it's a question of living with it. For me, there is no relief. But it does seem to ease down in waves...then back again etc. If you are on facebook then please do come and join our wonderful support group ... as you will see from here and in the group there are many of us sufferers and can give such help and support and friendship, every single day... you are never alone. Please do pm me if you wish . Here's the link for the f/b page ... please do join www.facebook.com/groups/221410511717076/ . The group is called Burning Mouth Syndrome UK

MsChe Thu 28-May-20 09:51:14

Flutterby1, gillybob, sunlover, and Sheena
Thank you all so much for your feedback and advice. Sheena, thank you for the Facebook recommendation. Is it private or will my friends see my posts etc?
I am really starting to think that maybe, just maybe this is being caused by vitamin B12 deficiency and anxiety/stress combined. The worry of this virus and the uncertainty of our future is not helping either. However, I have started meditating and at night listening to mindfulness videos on YouTube, this one in particular. youtu.be/UwRKEjQ4yuo
Really helps. I just put on my headphones and fall asleep like a baby.
As none of you have mentioned age I can't relate all the cases to menopause but I do believe we are all women judging by the cute usernames smile and probably one of the reasons women get it more, apart from hormonal factors, I think, and that's just my opinion, is that some women are natural worriers. I definitely am a terrible worrier.
I think the thing that bothers me the most with this ailment is the dryness of my mouth which nobody has mentioned. I actually can't talk without a bonbon or a lozenge in my mouth. That's the worst symptom.
Anyway, thank you all once again. My doctors appointment has been brought forward to tomorrow. I shall definitely report back here.
God bless!

Sheena Thu 28-May-20 10:47:23

Hi MsChe ... the facebook group is a private group therefore none of your friends will see what you post, only the members of the groups . As for age.. yes it seems that a big percentage are women of menopausal age, but that isn't always the case, there are several people who are in their 20s, 30s, and 40s with this condition ... and also some men. Just about anything can trigger it, including dental work... but yes, anxiety plays a big part in how bad it feels. I personally do not think that's the cause although some medics say it is... but it certainly exacerbates the burn. And it can affect all different parts of the mouth, mostly the tongue, but soft palate, gums, lips etc and also give tooth pain. There are lots of papers been written about this condition as it is by no means rare, and very little conclusion sadly. Antidepressants may help as although we may not be depressed, the condition in itself is depressing as no doubt you have found. Please do join us on f/b ... it does help enormously to be able to write freely and also glean advice and support. Best wishes MsChe

MsChe Thu 28-May-20 11:57:19

Thank you Sheena. Thank you very much. I actually did join. Waiting for my request to be accepted. Best wishes to you too.

Katyj Thu 28-May-20 12:03:23

Hi. Mine started with the Menopause around 50. I don’t have the dry mouth that you mention, but I think there is something you can buy to help with that.I was offered anti depressants and cbt neither of which I took up.

MsChe Thu 28-May-20 12:39:01

Katyj
Thank you for your reply. I have tried other dry mouth relief solutions too. Glandosane spray which only helps for that moment. I am also going to try saliva stimulating tablets known as SST. Let's see how much that helps.
Weirdly today my nostrils have started to burn. It's awful.
I also refuse to go down the anti deppresant root. The last thing I need is to get hooked on those. Thanks Katy