Burning Mouth Syndrome

Hello Susan,

No, I haven't had any side effects yet from the patches, apart from potentially making my mouth worse yesterday and today but with BMS I've had not so bad and bad days (I can't say good days as since I took it a couple of months ago I haven't had any good days!) so maybe it's not the HRT giving me issues?  I'm only on half patch at the moment so 25 mg instead of the 50 mg but so far, no worrying reaction to the patch.

I'm 50 years old, knocking on the door of 51 ;o)  my issues all started just after the New Year and I've spent 6 months trying to work out what's going wrong in my body, probably like everyone else on this forum ;o)

I'm glad you're not suffering from BMS as it's an absolute misery to have, and for what I've read, there's no guarantee you can get rid of it so I'm hoping some knowledgeable ladies on here can share some success stories and give me some hope that come time, I will feel better as my GP isn't giving me any hope at all! ;o(

x 

Hi Pam!  My hot, burning mouth started when I was about 47. It seemed to start overnight or maybe it was gradual and I just did not notice. It progressively got worse and I found that I started sucking hard on my tongue as well because my mouth was so irritated. I did not realize until about a year ago that it was probably a symptom of peri-menopause, which I'm just assuming it is. I found I had to change my toothpaste because over-the-counter pastes make it much worse. I use Natures Gate (from Amazon or Whole Foods) and sometimes Sensodyne, otherwise, it gets much worse. I'm sorry to say that I still have hot dry mouth. It is not as bad but it's absolutely still there and I'm almost 54 now. I'm post menoupause (no period for 1.5 years) and I'm dry "down there" as well, and while last spring I had some hot flashes, this past spring I had them about 15 times a day, EVERY day for almost 4 months. That created a deep depression and honestly, very dark thoughts, if you know what I mean. Thank god the hot flashes have waned and now they are what I call "warm fronts" and they are tolerable. But I'm always warm and it's just awful. I tried Black Cohosh to no avail. I have no insurance, so I don't take anything for my symptoms. Over the years, not one doctor or dentist could tell me what the problem was...not one even suggested it could be peri-menopause!  I have NO trust in doctors at all. Sad. Try a new toothpaste (with no flouride, SLS, etc) and I hope that will help you. I don't think my issue will ever go away completely and while it sucks, and I try new products, I've come to accept it. 

Hello Kazjo,

Thank you for replying, my heart goes out to you as it sounds like you are having a tough time, I know what you mean about the dark thoughts, I go there from time to time also and it's hard to get yourself out of that way of thinking, but somehow we always manage.  I don't think there's anyone more resilient than a menopausal woman ;o)

My GP has been pretty useless as well, although my Dentist did mention BMS to me before my symptoms got really bad, so at least he had a half decent idea of what was going on!  I had to go private to a Menopause GP to put my mind at rest that what I was experiencing might be the menopause as my local GP refused to entertain the idea. That conversation alone with the menopause lady helped lift my spirits, I'm far from feeling better but at least she reassured me that I wasn't going crazy nor was I alone in what I was going through.  And of course, all the wonderful people on here taking the time to share stories, offer advice and provide huge support makes such a difference when you are feeling low, so thank you ;o)

Wishing you a lovely weekend x

 

Hello Imagine

Thank you for replying :o) it’s a pretty miserable symptom that’s for sure. I don’t know anyone else that has it or has had it so I felt quite alone until I started reading this forum. I’m sorry you’ve had to go through this misery too but at least you have come out the other side and feel better. I hope you don’t mind me asking but were you on HRT at the time you had it? I’ve read a few comments that HRT helps but i guess everyone comes with symptoms differently? 

X 

Hi Palm, I am not on any medication. Due to my health history I am not allowed HRT. I think HRT works wonders for some women and cures only some of the symptoms for other. Or it doesn't work at all for some ladies. It is not fun going through different symptoms all the time. Take care. I am sure your BMS will stop one say, hopefully soon. All the best

Aaww thank you Audra, yep every days a battle at the moment, most days I cope but I get anxious now and again and that’s another horrible symptom! I guess I’ve no option but to accept it for what it is and hope it runs its course. I took an intense burning through my whole body first, numb hands when I would wake up and then the burning in my mouth started. The burning in my body is about 80% better now so I’m hoping my mouth will follow suit! 

Thanks again for your input, it’s much appreciated.

X 

Hi Pam,

I have just seen your post from a few years back as i am really struggling with BMS daily as in it burns 24/7 - have had this for 7 months now!

Just wondering - has your mouth eased or are you still suffering?

Any tips on how to deal with this would be greatly appreciated!! x

Thanks

Karen x x x

Hello Karen,

Firstly, I'm so sorry to hear you are suffering with this awful condition, I can totally relate as mine was beyond miserable and daily burning, the same as you. I was so hoarse with it, it affected my whole mouth, teeth, gums, throat but the worst thing was my tongue, it just stung 24/7.

OK, the bad news first.... I still have it HOWEVER it has greatly improved to the point where most days I don't have it and when I do get it, I can live with it so please don't hang on to the fact that I still have it as it has improved. Yes, it's disappointing when I have bad days but I also know I will get relief from it soon for a while before it comes back. Nowadays it usually just affects my tongue.

I've asked everyone - GP, Dentist, Maxillofacial and Neurologist (I was there for other symptoms that I have) and none of them could give me a cure to this horrendous condition. I googled endlessly and tried everything suggested. I even went to a private GP and asked for a prescription for the Herpes virus that causes cold sores and can affect the tongue - it's called HSV Type 1 - however the antibiotics didn't work as I didn't have the virus.

So, 3 years on and I've learned the following:-

Stress makes mine worse. The more I stress the worse it gets so I try not to stress about it and I usually find I'm not aware of it most days.

I use unflavoured toothpaste - I'm in the UK and it's called Oranurse and it does help.

I hold chewing gum in my mouth - I know this sounds weird but when the salivary glands are activated it seems to calm it down. I always found when I was eating it would ease off but as soon as I stopped a meal it was straight back so holding chewing gum in my mouth does ease it.

Anything perfumed near or around my mouth triggers it i.e. soap, cleansers, moisturers that have perfume in them. If it hits my lips then it fires my tongue up.

Sugar and fizzy juice definitely makes mine worse so I try to avoid that where possible, especially Coke Zero and I love that stuff lol

Other tips I read is Xyliment lozenges can help (I believe you can get them from Amazon, I haven't tried them) check your B Vitamins, especially B12 and zinc deficiency may affect your mouth.

I do wish I could say that I found a cure for this but unfortunately I cant... however, although I'm at the 3 year mark, mine has definitely improved over time and that most days I don't notice it. Please also try to bear in mind that most people actually get rid of it, it goes away as mysteriously as it comes, it just doesn't seem to have a time limit.

I have my fingers crossed for you Karen, hang in there, mine was severe and it did get better, so I'm hopeful it will ease off for you soon as well.

Take care.

Pamela

XX

The dry mouth is annoying. The Burning Mouth syndrome is a pain. Not being able to ease the pain was scary. Ordered some new products to see what will work for me. I am happy that something may work. I even learned the homemade sparkling mineral water I was consuming erodes tooth enamel making the teeth more sensitive and painful. Keep us posted how it is going for you. Thank you for sharing.

hi Kami- just wondering how you are getting on and if you have found any way to relieve the symptoms? I think I have BMS - Although not experiencing a burning pain but a constant bitter taste in my mouth that is very strong and dry lips! It is completely taking over my life and I’m so depressed with it. I have had lots of tests and tried lots of different medications but none of them seem to work. i’m on HRT and have been since March and I think my symptoms might have eased a little but I’m not sure. this has been going on for about a year now. would love to hear some good news from you if you have any?

hi Pam

I have just read this post- thank you so much for writing it. I have been suffering with a horrid bitter taste in mouth and very sore dry lips. I think it is BMS and it is ruining my life. Still going through tests with my doctor but it fits the profile. I have had it relentlessly for about a year and some days it makes me feel so depressed I go to dark places. Your post has given me hope- so thank you!

Pippa x

Hi All! glad to read your posts- I too am

struggling! For a year now I have had a horrid taste in my mouth that is overwhelming! It isn't burning but very bitter and I am thinking it is a form of BMS. It is ruling my life! I have had various tests- all clear and various medications- none of which have worked! I am 55. Have been on HRT since April this year but no real difference! I wake in the morning and it is quite mild but kicks in after an hour. Eating and drinking relieves the discomfort for as long as I am eating and drinking. It fluctuates during the day or from day to day but is always present- which makes me feel it is hormonal! I just want it to go away as I can't distract myself from it! reading these posts gives me hope that it might go one day- I just have to hang in there!