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Burning mouth syndrome (BMS): Is this an autoimmune disease?

Posted by iluvkatz @iluvkatz, Jun 8, 2016

I have had BMS for 14 months. Does anyone know if this is an autoimmune disease?

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celia16 | @celia16 | Sep 9, 2024
In reply to @francesblair "My doctor prescribed B-6 just because the level was low and then my periodontist upped the..." + (show)
Profile picture for francesblair @francesblair

My doctor prescribed B-6 just because the level was low and then my periodontist upped the dose for bone growth and my BMS is in total remission after a few months.

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Do you recall the number for your B6? Mine is in the marginal range of a 4. I’m going to ask about supplementing a little. I don’t think I have burning mouth, but I have intermittent burning on my throat and foot. Related? Idk. Justbtrying to get my nutrition to an optimal level, since I’m treating B12 deficiency.

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londonex | @londonex | Nov 2, 2024
In reply to @sheetrock0131 "Sorry for your pain.you are not crazy.i am a 20 plus sufferer of bms.i live less..." + (show)
Profile picture for sheetrock0131 @sheetrock0131

Sorry for your pain.you are not crazy.i am a 20 plus sufferer of bms.i live less than 6 miles from the Boston area, i have been to Brigham and womens,Tufts cranial facial and pain clinic,Beth Isreal hospital, Mass General Hospital. .There has been no treatment that can help this condition. Meds are the only source of temporary treatment. I am on Cymbalta,Clonazepam, low dose of Oxycodine. The depression is very bad.I am soon to be 67 yrs old.
There are no golden yrs for me.
This condition is so debilitating, somedays i feel like i just can't go on.
I now go to a pain clinic.I recieve nerve blocks,wich intail 25 shots a month.

I also have trigeminal neuralgia.
I am sad for all the people who suffer like me.BMS hits young,old,mostly women.Please feel free to contact me anytime..
I did recently read a story about a woman who suffered for many years with BMS, and she came across a Dr in Colorado.This specialist gave a tounge swab,and found out she was carrying a herpes germ, she caught.
They put her on Valtrex for a month and is rid of her BMS.

I went to see a infectious diseases Dr.Who swabed my mouth ,but found nothing.
She was lucky..
I would give that a try,you have nothing to lose..Good luck,maybe it will be worth the trip to Dr...

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I too am in the Boston area and have been to the best hospitals for diagnosis of BMS. Mine takes the form of burning in the back of the throat, tongue and roof of the mouth with associated pain in the same areas. Original diagnosis was GERD but tests have proven that is not the case. The BMS typically flares up when I have more stress and anxiety in my life. I have somewhat acclimated to it, but when it does get bad, it is pretty awful. Medications have not helped it for me, only yoga and stress reduction. Good luck.

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ksdm | @ksdm | Nov 4, 2024

I only have a dry mouth at night. I wake up in the morning with a serious "cotton mouth". During the day, no problem at all. I also have a burning sensation in my mouth most of the day but never at night! Can these two be related? A mystery!

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celia16 | @celia16 | Nov 4, 2024
In reply to @ksdm "I only have a dry mouth at night. I wake up in the morning with a..." + (show)
Profile picture for ksdm @ksdm

I only have a dry mouth at night. I wake up in the morning with a serious "cotton mouth". During the day, no problem at all. I also have a burning sensation in my mouth most of the day but never at night! Can these two be related? A mystery!

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Yes. That’s interesting. I only have my symptoms intermittently.

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ksdm | @ksdm | Nov 5, 2024
In reply to @mollyquilter "Yes, it’s part of Sjogren’s; includes dry eyes, dry mouth, and burning vulva. There is a..." + (show)
Profile picture for mollyquilter @mollyquilter

Yes, it’s part of Sjogren’s; includes dry eyes, dry mouth, and burning vulva. There is a blood test for it but it’s not very reliable. I take amitripylin at night, use Theratears recommended by my eye dr. At night and in the a. m. plus avoid really acidic triggers( for me..strawberries , walnuts, lemonade, & the worst of all—raw pineapple. You can google burning tongue and see examples of that. I believe The Mayo Clinic has a web page with many conditions where the tongue looks a certain way. P. S. I also take sublingual Vit. B12 and carry water everywhere!

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Maybe the sublingual vit. B12 is causing dry mouth....

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dkelban | @dkelban | Nov 7, 2024
In reply to @mollyquilter "Yes, it’s part of Sjogren’s; includes dry eyes, dry mouth, and burning vulva. There is a..." + (show)
Profile picture for mollyquilter @mollyquilter

Yes, it’s part of Sjogren’s; includes dry eyes, dry mouth, and burning vulva. There is a blood test for it but it’s not very reliable. I take amitripylin at night, use Theratears recommended by my eye dr. At night and in the a. m. plus avoid really acidic triggers( for me..strawberries , walnuts, lemonade, & the worst of all—raw pineapple. You can google burning tongue and see examples of that. I believe The Mayo Clinic has a web page with many conditions where the tongue looks a certain way. P. S. I also take sublingual Vit. B12 and carry water everywhere!

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Plaquenil Helped me a lot I also use biotene mouthwash, dry mouth spray, and toothpaste. All help. I also use a high-fluoride prescription toothpaste prescribed by my dentist and have more frequent cleanings to prevent dry-mouth cavities. All together, my dry-mouth symptoms are greatly improved. I have Mixed connective tissue disease with mainly sjogrens symptoms.

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lkirnbauer | @lkirnbauer | Nov 8, 2024

Did you have a Thyroid blood panel done? That might tell you if you have an autoimmune disease. I had mine tested after having Covid and to my and my doctor’s surprise, I have Hashimoto’s with Hypothyroidism. My numbers for the Hashimoto’s was off the charts, at almost 600! Never before had any symptoms and I’m 68 years old! I also lost my taste and smell in December of 2022 and still don’t have it back. It’s been pretty awful to say the least. I would have a Thyroid blood panel done and ask them to check all the things!

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samarakelly | @samarakelly | Jan 29, 2025
In reply to @hlab27 "I’m not sure if this has been covered before, but I will add something that did..." + (show)
Profile picture for hlab27 @hlab27

I’m not sure if this has been covered before, but I will add something that did wonders for me. When I was deep into BMS a couple of years ago, I was about to start acupuncture for a different malady. My wife asked if acupuncture might make the BMS worse, so I researched it and found a medical study that showed that a particular type of acupuncture was actually beneficial. I printed the study, took it to the acupuncturist, and he followed the procedures outlined. My BMS subsided by 80 percent within three months of treatments. There were times when there were no symptoms at all. It returned to a lesser degree about six months later, so I went back and had a few more treatments. It’s been almost a year and I would say that I feel nothing 90 percent of the time and just slightly noticeable the rest. I’m VERY happy I found the research and had the protocol. I can only verify that it worked for me, and it may for you. Best of all, it has not side effects. Here is a link to the study, which I downloaded and took to my acupuncturist.
https://www.nature.com/articles/sj.bdj.2010.582
Over time, he added some more points beyond what was called for in the study. I think two in particular added a lot. I don’t know what they are called in acupuncture vernacular, but they were next to the fingernail on the fourth and fifth finger. Those, unlike the others, did hurt, but I think made a lot of difference.

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I did this same study with my acupuncturist for many months and unfortunately I saw no relief. I’m happy it helped you though!!

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hlab27 | @hlab27 | Jan 29, 2025
In reply to @samarakelly "I did this same study with my acupuncturist for many months and unfortunately I saw no..." + (show)
Profile picture for samarakelly @samarakelly

I did this same study with my acupuncturist for many months and unfortunately I saw no relief. I’m happy it helped you though!!

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I'm sorry it didn't work for you. Just shows that each body is different. Did you mention to your acupuncturist the addition of the two additional finger spots I mentioned? Once those were added (after several sessions just going by the study points), my BMS diminished within weeks.

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samarakelly | @samarakelly | Jan 29, 2025
In reply to @hlab27 "I'm sorry it didn't work for you. Just shows that each body is different. Did you..." + (show)
Profile picture for hlab27 @hlab27

I'm sorry it didn't work for you. Just shows that each body is different. Did you mention to your acupuncturist the addition of the two additional finger spots I mentioned? Once those were added (after several sessions just going by the study points), my BMS diminished within weeks.

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Yep we did those from the beginning with the legit Chinese diameter needles and all the other points in the study. I’m so happy it worked for you though, thats great. I went for about 10 weeks and then gave up. I also have small fiber neuropathy with affects my whole body but the burning mouth was and continues to be the worse of it. Had it about a year. Was there anything else you did in addition to the acupuncture that may have helped?

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