Burning mouth syndrome (BMS)

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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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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@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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@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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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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@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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@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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@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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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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