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?

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Has anyone been treated and helped at Mayo clinic for this condition?I am considering going for treatment.I have been to many clinics in the Boston area,all they do is try different meds.If anyone has been helped i would enjoying talking with them..This has been an 18yr. long condition…

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Great question, @iluvkatz. Mayo Clinic classifies BMS as a chronic pain disorder, noting that burning mouth syndrome is the medical term for ongoing (chronic) or recurrent burning in the mouth without an obvious cause. Included here is more information on BMS, its symptoms/causes as well as various treatment methods (http://www.mayoclinic.org/diseases-conditions/burning-mouth-syndrome/home/ovc-20179959).

I’m also tagging @jamesmanning60, @ilovebooks1943 and @morgens – all members who have discussed burning mouth syndrome. @iluvkatz, do you have specific relief methods that subside the pain?

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I was taking lisinopril. I had read that the drug could cause BMS. So with doc’s approval, I stopped the med. Within several days, the pain diminished. My tongue still burns to a lesser degree, mouth is still full of sores and I can’t taste food very well.

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i had bms for many years with no diagnosis. finally tests determined sjogrens, no help but nice to know. sometimes the newer saliva increasers mixed with a little liquid benedryl helps.

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@sheetrock0131

Has anyone been treated and helped at Mayo clinic for this condition?I am considering going for treatment.I have been to many clinics in the Boston area,all they do is try different meds.If anyone has been helped i would enjoying talking with them..This has been an 18yr. long condition…

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I noticed the left side enlargement of my tongue in 2007. It was causing mild burning pain at the time…. enlargement stays all the time, severe pain 70% of tree time and moderate pain 30% of the time. Nothing has helped, colds make the pain in my mouth go up exponentially. I have seen at least 20 different docs including several at jax mayo clinic. They only think i tell the truth about the pain i am in bc of the marked swelling of my tongue. Every blood test is perfect except a mild ana positive sign. No one can help. Going on ten years. My life has been greatly diminished by the pain. I feel crazy.

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@sheetrock0131

Has anyone been treated and helped at Mayo clinic for this condition?I am considering going for treatment.I have been to many clinics in the Boston area,all they do is try different meds.If anyone has been helped i would enjoying talking with them..This has been an 18yr. long condition…

Jump to this post

Welcome to Connect, @ladenole. I cannot imagine how difficult it is to not have found relief for almost 10 years. I’m tagging fellow members @mfelton @iluvkatz @uncbball and @susanlcw to bring them into this discussion as they have recently talking about burning mouth syndrome as well.

Ladenole, you may also be interesting in reading these discussions on BMS; one older, one recent:
– Burning Mouth Syndrome very severe http://mayocl.in/2dnfRpH
– Burning mouth syndrome (BMS) http://mayocl.in/2dKba8p

What to you use to relieve the pain? What foods can you eat and what do you avoid?

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@ladenole

I noticed the left side enlargement of my tongue in 2007. It was causing mild burning pain at the time…. enlargement stays all the time, severe pain 70% of tree time and moderate pain 30% of the time. Nothing has helped, colds make the pain in my mouth go up exponentially. I have seen at least 20 different docs including several at jax mayo clinic. They only think i tell the truth about the pain i am in bc of the marked swelling of my tongue. Every blood test is perfect except a mild ana positive sign. No one can help. Going on ten years. My life has been greatly diminished by the pain. I feel crazy.

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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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@sheetrock0131

Has anyone been treated and helped at Mayo clinic for this condition?I am considering going for treatment.I have been to many clinics in the Boston area,all they do is try different meds.If anyone has been helped i would enjoying talking with them..This has been an 18yr. long condition…

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If anyone needs to ask a question,please feel free.im a 20 plus yr sufferer.i gone the whole route..

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@ladenole

I noticed the left side enlargement of my tongue in 2007. It was causing mild burning pain at the time…. enlargement stays all the time, severe pain 70% of tree time and moderate pain 30% of the time. Nothing has helped, colds make the pain in my mouth go up exponentially. I have seen at least 20 different docs including several at jax mayo clinic. They only think i tell the truth about the pain i am in bc of the marked swelling of my tongue. Every blood test is perfect except a mild ana positive sign. No one can help. Going on ten years. My life has been greatly diminished by the pain. I feel crazy.

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I have had BMS for years and have just this past week taken something that has helped. I also have Neuropothy, The Neurologist gave me medication for that and it has really helped my BMS, I wish I had had it 8 or 10 years ago its really made a difference, the medication is Lomotrigine.

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@ladenole

I noticed the left side enlargement of my tongue in 2007. It was causing mild burning pain at the time…. enlargement stays all the time, severe pain 70% of tree time and moderate pain 30% of the time. Nothing has helped, colds make the pain in my mouth go up exponentially. I have seen at least 20 different docs including several at jax mayo clinic. They only think i tell the truth about the pain i am in bc of the marked swelling of my tongue. Every blood test is perfect except a mild ana positive sign. No one can help. Going on ten years. My life has been greatly diminished by the pain. I feel crazy.

Jump to this post

I also.am a 20 plus sufferer of bms,and i.also have trigeminal neuralgia. I get anout 25 nerve blocks a month,for the neuralgia, but nothing has helped my bms.
Ive been to many hospitals in Boston,i am currently taking cymbalta and oxycodine, and clonazepam. .
It does interfere in ypur everyday life.
Its a debilating condition.
Somedays i feel like i just cant go on.
I also had accunpuncture, but sadly nothing helps..If you need any quest answered, please feel free to ask
.

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@ladenole

I noticed the left side enlargement of my tongue in 2007. It was causing mild burning pain at the time…. enlargement stays all the time, severe pain 70% of tree time and moderate pain 30% of the time. Nothing has helped, colds make the pain in my mouth go up exponentially. I have seen at least 20 different docs including several at jax mayo clinic. They only think i tell the truth about the pain i am in bc of the marked swelling of my tongue. Every blood test is perfect except a mild ana positive sign. No one can help. Going on ten years. My life has been greatly diminished by the pain. I feel crazy.

Jump to this post

Thank you for that information, im going to run it by my neurologist. .Any piece of info.is greatly appreciated. .

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@sheetrock0131

Has anyone been treated and helped at Mayo clinic for this condition?I am considering going for treatment.I have been to many clinics in the Boston area,all they do is try different meds.If anyone has been helped i would enjoying talking with them..This has been an 18yr. long condition…

Jump to this post

There aren’t any foods that will worsen bms.I have been on cymbalta,clonazepam, and a small dose of Oxycodine. Medication helps only to a point.There is nothing that can completely take it away.My bms started after a learning student gave me a novacaine ,and damaged my nerve.I will have it for the rest of my life..I pray for all who suffer..
Please feel free to contact me by private message.

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