Burning Mouth Syndrome - what helps?

[MAT51]

No one has ever called it BMS but I take it this is what makes my gums and lips become intolerably sore with burning and tingling as the day progresses for the past three years or so? I've asked dentists and doctors and tried all the antidepressant/ anticonvulscent meds. The SFN comes and goes as my inflammation levels fluctuate but the burning gums and lips bug me daily and seem to be particularly awful just now, as are my dry eyes.

When I asked my excellent oral consultant she said "it's just because your mouth is dry as part of your Sjögren's". But I don't have teeth problems or thrush as far as I know? Well maybe I do but it's not visible to my dentist or oral consultant. My sister has this horrible symptom too but unlike me she's not an autoimmuner. She's deaf and it really makes her miserable so I'd love to be able to help her but we've both tried all the DIY things we can think of - B12, Vit D, cutting out gluten etc etc. Presently I'm on the Paleo diet and trying to ease up on all fruit - especially bananas and dried fruit. But still it continues to torture my lips and gums. Can anyone here help?

[irish]

I see you have small fiber neuropathy listed and the burning could be from the neuropathy. Others have said that the burning is associated with autoimmune neuropathy. It may be time for stronger medication. I just read somewhere today that Rituximab is supposed to help with this issue. Good luck. Irish

[MAT51]

Thanks Irish. Yes I do have SFN and am on Cellcept for this. The rest of my SFN has diminished for now but the mouth issue continues unabated. I don't meet the criteria for Rituximab here in Scotland just now as I'm seronegative (ie only +ANA and lip biopsy not Ro & La). Hopefully the Cellcept will be effective eventually as I move up to max dose of 3g just now. The body wide pain of SFN and arthritis has diminished but my Sjögren's Sicca symptoms are hellish. Steroids got my inflammation levels down a lot but DMARDs take much longer - if I can tolerate them enough that is! I'm thinking of asking to try Nortryptiline for the burning mouth as I had to take Amitriptyline but it made my eyes very dry and finally, after 3 years, gave me severe palpitations.

I do think the dryness comes into the BMS probably because my mouth is very dry just now. I'll continue to try and avoid fructose for a while to see if I can get on top of it (sugars are a catalyst for thrush I believe).

[Deb 27]

MAT, I posted something similar recently.  Do you use a toothpaste formulated for dry mouth? I am guessing you do already but that's a good start if you don't. Also, pay attention to which foods do this. I see you are highly allergic and it may be oral allergy syndrome. I have a problem with some foods that case my mouth to burn, it's mostly nuts.   Good luck to you!

[Maria3667]

When worst comes to the worst I chew on a soy-lecithin capsule to stop the burning sensation. Seems to work quite well.

Also useful might be slippery elm as it improves both production and quality of saliva. I've only been on 1 capsule daily now for 1 week, so far no ghastly side effects.

What's probably sure to help is low dose testosterone and/or dhea, if you're willing to accept the side effects.

Take care!
Maria

[Nymph]

For what it's worth, I developed BMS/geographic tongue after stopping my Neurolink supplements. When I started them again it got better. I am sure that mine is neurological as this also corresponded to other neurological symptoms flaring. I don't know why it helps, and have not met a single doctor who knows, either.

[cccourt1942]

Mat: I've written about this horribly painful and indefatigable condition several times.  I no longer suffer from the tongue issue itself, but my lips (which burned and felt dry) began at least a decade before my tongue was affected. 

First: I never found a doctor or dentist who could explain what it was.  I never mentioned it to a dr. until my tongue.  Over the last two years prior to dx, I lost 30 to 40 pounds.  (I wish I had that problem now... )  Anyway, a dentist (not mine..the daughter of a friend of mine) learned I had SjS, and she called to give me her advice about the  oral cavity and meds, etc.  In the process she asked if I had burning tongue.  I was flabbergasted. She said she had never learned the origin and the most patients she had treated were really post cancer radiation/chemo patients (of head and neck).  They have it temporarily and then recover.   She told me about Ora Soothe.  It can be purchased thru Amazon.  I know you are in the UK...and not sure you can get it there.  It is truly a homeopathic mixture of cinnamon, cloves, etc.  It calmed my tongue.  It took about 2 months.  This was swishing it twice daily.  The first couple of weeks it was painful.  Next couple of weeks, it hurt.  Then...I could swish longer and longer. 

It never "cured" it.  I would stop using in, and within a few days, it would be hurting again. 

Fast forward two years and I had been dxed and landed with a rheumy who put me on LDP (low dose prednisone.)  I believe THIS is what cured my tongue. I must say , my lips continue to hurt.  I seldom wear lipstick as it bothers my lips.  I use an aloe vera product on my lips....constantly: all day, all night.  I can't use any "balm" type lip product as the products never soothe.  It just aggravates them....this includes Burt's bees products.  One of the strange things about my lips is I also have thrush in the corners of the mouth.  I used to use Carmex to that area thinking they were chapped.  One day the dental hygienist pointed out I had thrush.  I was dumbfounded.  I use an Rx Nystatin salve now on those areas.

Forever Aloe Lips is available from Amazon as well.  I used to use a Body Shop product called Aloe Lip Care.  They told me the product is being reformulated.  I am telling you this since Body Shop is on every corner in every city in the UK.  You may find this now discontinued product on shelves at Body Shop if they had a lot in supply. 

I don't envy you this condition.  It DOES hurt. It DOES alter your life.  I am a retired speech therapist...I worked until I was dxed with SjS.  I drank copious amounts of water to do therapy.  Water does nothing but wash away any good mucous you accidentally have in your oral cavity.  I didn't know. 

Good luck...and keep us posted on what you learn on your side of the pond about this strange and uncomfortable condition.
ccc

[Deb 27]

I haven't tried this but I wonder if some   food grade aloe would help? You could rinse your mouth with it a few times a day??     Also a med to help you make more saliva?  If push comes to shove, some prednisone??? Sounds like you are really miserable. I hope you get some relief soon.

[MAT51]

Mat: I've written about this horribly painful and indefatigable condition several times.  I no longer suffer from the tongue issue itself, but my lips (which burned and felt dry) began at least a decade before my tongue was affected. 

First: I never found a doctor or dentist who could explain what it was.  I never mentioned it to a dr. until my tongue.  Over the last two years prior to dx, I lost 30 to 40 pounds.  (I wish I had that problem now... )  Anyway, a dentist (not mine..the daughter of a friend of mine) learned I had SjS, and she called to give me her advice about the  oral cavity and meds, etc.  In the process she asked if I had burning tongue.  I was flabbergasted. She said she had never learned the origin and the most patients she had treated were really post cancer radiation/chemo patients (of head and neck).  They have it temporarily and then recover.   She told me about Ora Soothe.  It can be purchased thru Amazon.  I know you are in the UK...and not sure you can get it there.  It is truly a homeopathic mixture of cinnamon, cloves, etc.  It calmed my tongue.  It took about 2 months.  This was swishing it twice daily.  The first couple of weeks it was painful.  Next couple of weeks, it hurt.  Then...I could swish longer and longer. 

It never "cured" it.  I would stop using in, and within a few days, it would be hurting again. 

Fast forward two years and I had been dxed and landed with a rheumy who put me on LDP (low dose prednisone.)  I believe THIS is what cured my tongue. I must say , my lips continue to hurt.  I seldom wear lipstick as it bothers my lips.  I use an aloe vera product on my lips....constantly: all day, all night.  I can't use any "balm" type lip product as the products never soothe.  It just aggravates them....this includes Burt's bees products.  One of the strange things about my lips is I also have thrush in the corners of the mouth.  I used to use Carmex to that area thinking they were chapped.  One day the dental hygienist pointed out I had thrush.  I was dumbfounded.  I use an Rx Nystatin salve now on those areas.

Forever Aloe Lips is available from Amazon as well.  I used to use a Body Shop product called Aloe Lip Care.  They told me the product is being reformulated.  I am telling you this since Body Shop is on every corner in every city in the UK.  You may find this now discontinued product on shelves at Body Shop if they had a lot in supply. 

I don't envy you this condition.  It DOES hurt. It DOES alter your life.  I am a retired speech therapist...I worked until I was dxed with SjS.  I drank copious amounts of water to do therapy.  Water does nothing but wash away any good mucous you accidentally have in your oral cavity.  I didn't know. 

Good luck...and keep us posted on what you learn on your side of the pond about this strange and uncomfortable condition.
ccc

So strange that my e-alerts seem to have stopped so that I decided no one from this forum was interested in my BMS post? I'm sorry that I've only just checked it out and seen these two responses. I will definitely try aloe Vera although I did try a homeopathic AV toothpaste and it made no odds. It's still there but been far less painful for these last few weeks since I have eaten less dry fruit or smoothies and also stopped taking my sublingual B12 tablets. I feel it could possibly be too much B12 although I was told that any excess would flush away naturally? But my rheum was checking out my B12 levels taken by endo last year and commented that they were quite high. Stupidly i forgot to ask how high. No one from my oral consultants to my dentist's have ever found oral thrush but several have told me that it's the MS side of Sjögren's that causes this symptom - so in other words it's neuropathic - small fibre neuropathy that is. Oh well onwards and upwards and hopefully this period of relative calm in my lips is here to stay! 

[MAT51]

I haven't tried this but I wonder if some   food grade aloe would help? You could rinse your mouth with it a few times a day??     Also a med to help you make more saliva?  If push comes to shove, some prednisone??? Sounds like you are really miserable. I hope you get some relief soon.

Thanks so much Deb. As I've just said to cccourt it's having a lull period just now despite my eyes and mouth being dryer than ever. I can think of no reason for this apart from that I've stopped taking my B12 sublingual tablets but that could be just coincidence. I use prescribed Duraphat toothpaste at my oral consultant's request. I did try organic aloe Vera toothpaste for about six months prior to using the Duraphat but it made no difference whatsoever! I'm now on the highest dose of Cellcept with no side effects beyond an increase in fatigue and general ugh GI symptoms.  But I think, from my bloods taken a few weeks ago, that I may have been flaring as my plasma viscocity and CRP (both measures of inflammation) were high. Sorry slow to respond but for some reason I'm not getting my e-alerts to these responses so have only just read them?!