Burning mouth syndrome question
 

Hi everyone, I haven't been on the forum in a while, just had to take a break away, I hope all of you are doing ok. I have a question about burning mouth syndrome. I have Small Fiber Neuropathy, I have had SFN for 2 years, but in the past month I have developed Burning mouth Syndrome, I have read that SFN can cause burning mouth syndrome but I'm hoping someone here has more information on this condition and maybe can offer some advice on what kind of help I should seek. I'll tell you this, SFN can sure reek havoc on your body. As always thank you for your help. Jan

Luke 1:37 For Nothing is impossible with God!:)

The good news (hopefully?) is that our good ol' R-Lipoic Acid has been shown to help a majority of BMS sufferers.

burning mouth syndrome lipoic

Doc

R lypoic
 

Thanks Dr. Smith, I hope you are right, I have been reading about BMS and that RLA has been known to help, I take 100mg a day. Thank you for your reply, hope you are doing well. Blessings, Jan

Burning Mouth Syndrome--
 

--is not a well-understood entity, though it may be related to the trophic changes of erythromelalgia and even complex regional pain syndrome (CRPS).

Take a look at:

http://neuromuscular.wustl.edu/senso...html#burnmouth

Glenn, another question
 

Thank you for the link...I have another question about BMS I am post menopausal and have SFN, could my BMS be from one or the other or both of these conditions? If its from SFN could it get better and do you think R-Lpoic could help? I do have bitter taste in mouth but I can still taste, I'm afraid to ask this question but could I lose taste all together? What about smell? I have also hesitated on going to the Doctor concerning BMS... Not sure there is much they can do... Do you think a trip to the Doctor might prove helpful? Thanks for letting me pick your brain. Blessings, Jan

Luke1:37 For Nothing is impossible with God!

The short answer is YES -- to SFN, and RLA (see below).
This does not mean other causes are not possible.
I don't see how menopause, in and of itself, could cause BMS.

Trigeminal small-fiber sensory neuropathy causes burning mouth syndrome.

The above information is quoted multiple times in the following link:

burning mouth syndrome small fiber neuropathy

I think that this is reason to remain hopeful. Six to seven years can also bring about new information/treatments.

I have not seen anything to suggest complete/permanent loss of taste or smell.

I don't advocate withholding anything from doctors, even if/when there isn't much they can do. They still need to know what's going on; the doctor/patient relationship is based on trust, and trust is based (at least in part) on communication.

Doc

Hi there....long time no see!

1) Burning mouth or other mouth irritations can be from
an ingredient in mouth washes, and toothpaste....it is called
Triclosan. New studies show it causes nerve damage.
There is a post about it on Myasthenia Gravis forum...so search there. And several posts on General forum and Introductions forum. Use our search function to find those.
I am sorry but I just cannot do that for you today.

2). B12 is the next culprit...low levels are connected to burning mouth.

3) As Dr. Smith has posted, lipoic acid can be helpful.

I recall finding a really good dental site with other suggestions, and I posted to a newbie about a year ago giving it. So use the search function to find that excellent article.

Sometimes burning mouth can be traced to certain food intolerances. Seafood, spices etc are the most common. But any food you are intolerant of can do it.

If you reflux in the night with GERD...it can burn your mouth too.
Excessive or regular vomiting will do it too.

Take care... I am leaving Sat morning, and won't be back for 5 weeks for my vacation in the wilds of the North!

There are many causes of BMS. It's relatively common in those with SFN, Sjogren's, dry mouth (from other conditions), nutritional deficiencies, and even quite common from thrush/candida.

It's one of those conditions where you'll just have to try different remedies until you find what works for you...or you identify the cause first.

Are you taking any kind of medication that is anticholinergic? I get BMS from Spiriva inhaler. If I take it for very many days in a row my airways burn too. I'm not sure if it is a contact irritation, it doesn't really feel like it and the med can cause regular SFN for me too.

judi

It is common for inhalers to cause dry mouth & also candida/thrush...which in turn can cause the BMS. Always rinse your mouth after using an inhaler...and then drink something to help rinse your throat as well.

Thanks so much for all the replies, the only medication I take is Gabapentin, it does cause dry mouth but I've taken it for 2 years without any problems, could it cause BMS? Hmmm!

If it did, I think it would be extremely rare; gabapentin is often mentioned as a treatment for BMS -- even when searching for it as a cause.

gabapentin cause burning mouth syndrome

Doc

I had it horrid for a year or so, even one grain of pepper made my toes curl and toothpaste was a big challenge. And then just like that it went away about the same time I started supplements now that I think about tit.

I sure hope the supplements do help, this condition is terrible, it's not bad enough that SFN causes numbness and burning, but that things like BMS is part of it is unbelievable! I sure am grateful for this forum and all of you. Thanks for all the support! Jan

Luke 1:37 For nothing is impossible with God.

Hi Jan
 

I have been reading about SFN for some time. My understanding is that SFN is a cause of facial pain, scalp pain, and mouth (lips and tongue) pain. I would have to go back and look through my stack of articles to find the exact citations. As I recall, SFN is likely to be localized to one side of the mouth or the other and in severe cases can interfere with swallowing. Believe it or not but it can be confirmed by a punch biopsy! Ouch.

Is yours localized to one side or the other? I have fairly severe facial pain on occasion. I am a little worried that one of these days I will start noticing the same thing on my tongue. That really sounds miserable.

Mike

Hi Mike,
I have had the bunch biopsy and it was positive. I have full Body SFN, so the numbness and tingling are everywhere, and yes its pretty miserable, but I am learning to cope with it since there is no known cure. I take 100mg of R-lypoic acid everyday and it seems to be helping the BMS, I keep thinking the progression of things going on with me will maybe stop someday, at least one can always hope! For now I am very grateful for this forum and I am a Christian so my hope is in Jesus Christ to get me through all of this! Have a blessed day. Jan

Luke 1:37 For there is Nothing impossible with God!

I, too, have burning mouth syndrome. It began about two months after the initial onset of other neuropathy symptoms. My mouth is burning now... tongue, gums, palate, lips... even down my throat. I have body-wide neuropathy so it sort of blends in with everything else but probably is the most distressing of my pain. I take Gabapentin (1800 mg daily) and Nortriptyline (10 mg) and it does help but never really takes it away. I have been tempted to try Cymbalta, but hesitate after reading the 20x20 package insert of side effects. You'd think I'd just grab it and take it given the pain, but I've read so many times that it "works" until it "doesn't work" and then you're left dealing with really nasty withdrawal symptoms, and I really don't think I could handle anything else. Yes, SFN does take its toll on both the body and spirit. Lift our Hands and ask for enough grace for the day, right? So sorry you suffer. No one (except someone experiencing it) can really understand how life altering this is. Blessing for your day:hug:

Hi heb1212, thanks for the reply, I am so sorry that you have body wide SFN, it's awful isn't it! I just this past month developed BMS. Just when I thought things could'nt get any worse, they did. I also have heart palpitations and of course a lot of other problems that I'm sure are related to SFN. I only take 300mg of gabapentin at bedtime I just don't like the sedating feeling it gave me during the day, I just couldn't tolerate it so therefore I only take it at night. I'm sorry you have this condition but I'm glad that you can relate to how I feel, it helps to know that someone else can sympathize. Everyday I try to remember to thank the Lord for giving me another day of life, like they say things could always be worse! If you don't mind can you tell me, is your SFN idiopathic or do you know your cause? How long have you had it? What other symptoms do you have? Sorry for all the questions, it's just unusual to meet someone who has body wide SFN! Hope to talk with you again soon, blessings, Jan:hug:

Luke 1:37 For nothing is impossible with God!