Burning mouth syndrome – anyone else have this?

Posted by londonex @londonex, Jan 1 8:39pm

I was diagnosed with burning mouth syndrome (BMS) in 2019 after going to my GP and gastroenterologist with complaints of heartburn and throat soreness. An endoscopy proved no GERD issues and an oral pathologist ended up diagnosing me with BMS. It has been described to me as a neuropathy of the fifth cranial nerve, and the second cranial nerve which, in my case, affects the back of my throat, top of my mouth and occasionally up through my sinuses to cause a raging headache. It comes on with high stress and anxiety, sometimes with hot or cold or spicy foods, and lasts anywhere from one hour to one week.
Really doesn’t respond to any medication. Stress reduction and yoga do help a bit (placebo?) when I put my mind to it but for the most part, BMS is a bothersome undercurrent in my daily life. Just wondering if others are suffering with this as well.
Thank you!

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Profile picture for William @willgranger1127

@dlydailyhope My wife has had this for a few years. It may be a result of Covid or the vaccine. I’ll keep watching this topic. She is not proactive about it.

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@willgranger1127 I never thought about the Covid connection. I did get Frozen Shoulder which the orthopedics specialist advised was an autoimmune reaction to the vaccine. The frozen shoulder did resolve after about 8 months. Will start checking into BMS connection.

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Let me know if you find out anything. My best!
W

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Profile picture for kathyacurl @kathyacurl

@willgranger1127 I never thought about the Covid connection. I did get Frozen Shoulder which the orthopedics specialist advised was an autoimmune reaction to the vaccine. The frozen shoulder did resolve after about 8 months. Will start checking into BMS connection.

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@kathyacurl My wife said she got burning mouth syndrome before the covid shot, so toss that out. A cannabis gummy may help. I don’t know. 🤷🏻‍♂️

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Profile picture for 9714542205 @9714542205

I’ve had this problem for years now and can’t get any Dr to hear me and address the problem. They don’t seem to think that it’s a problem and they don’t know what to do about it, so they’re just trying to ignore it. Now they tell me that I have a lump on my easophagus and that scares me because that cancer is bad. I’m going to get tested this week. I hope and pray that it is not cancer, but my gut tells me it is. I have all of the symptoms.

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I've had BMS for about three years. It's horrible!! Am trying hard to not let it ruin my life! I guess time will tell. It started right after I had surgery for dental implants and has never let up. I have wondered for a while now if there was somewhere to talk with other people that have this. I kind of stumbled on this by accident and am really glad that I did. So, I have been to so many doctors and tried so many meds and the only thing that helps me ( and I pretty much live on these!) is Popsicles, hydrocodone and Act Gum(for dry mouth)! It all helps just a little bit!
I'm so sorry to everyone that has this. I truly do understand! Sorry for my venting; but have never met even one other person that gets this. Thanks

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Yes!! I have had it for two years following a dental visit. I've been back to this dentist and many others along with doctors, specialists, ENT's. The only thing anyone can come up with is BMS. I'm done going to the doctors. I have been researching everything I can find and adding and eliminating things in my life. Mine will get more aggressive with spicy foods, or hot liquids. I try to let my coffee cool down in the morning. I have recently added Alpha Lipoid Acid 600 mg. first thing in the morning with a large glass of water. I noticed the last couple of days, my burning has been more of a bad taste. I'm really hoping this is helping. I take other vitamins also. I had blood work done and that was easy to find out what I needed. Have you tried the ALA??? I'm so sorry you have this also. It is Sooo Miserable.

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Profile picture for nancyg58 @nancyg58

I've had BMS for about three years. It's horrible!! Am trying hard to not let it ruin my life! I guess time will tell. It started right after I had surgery for dental implants and has never let up. I have wondered for a while now if there was somewhere to talk with other people that have this. I kind of stumbled on this by accident and am really glad that I did. So, I have been to so many doctors and tried so many meds and the only thing that helps me ( and I pretty much live on these!) is Popsicles, hydrocodone and Act Gum(for dry mouth)! It all helps just a little bit!
I'm so sorry to everyone that has this. I truly do understand! Sorry for my venting; but have never met even one other person that gets this. Thanks

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@nancyg58 I agree, the gum does help also the Xylimelts help, but again, short term. Mine was also after a long dental visit which involved many teeth. I did narrow it down to tooth 12, but after 3 different crowns and finally an implant it is still there. Nothing has helped. I think when I had the numbing shots a nerve was damaged. I have read that can happen.

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Hello,
This burning mouth is a life changer and as everyone has said, no medical professionals I have seen, consider it a thing. At best, they shrug their shoulders and say talk to your dentist, check with ENT, etc. I also have multiple chemical and fragrance sensitivity which is also NOT a thing in the medical realm. I get the taste of chemical or fragrance in my mouth PLUS the burning mouth! I try to remember things could be worse and I thank God for things that I DON'T have but venting with others is a support. I am open to a y ideas.

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I've had BMS for nearly twenty years and fragrances bother me a lot too. I have to be careful what I eat or I'll get blisters and lots of pain.

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