Burning Mouth Syndrome. I have it very severe.

Well with RA we have times with little to no pain. However RS can hit you suddenly and last in my case a week or two. I hate it but realize there is nothing I can do about it.

Thanks. I'm going to look into the botox for bms. I use it for migraines. You're right -- stay away from surgery. Let's continue to stay n touch.

Hello, @cajeffery, and welcome to Mayo Clinic Connect. Your input on eliminating sugar and avoiding overindulging in caffeine seeming to help you with the BMS is very interesting. How did you come to realize this? Also, wondering if you'd be willing to share more about what "oil pulling" is?

BMS is a puzzling affliction, plaguing those of us who endure it with unrelenting intensity. I have found the only thing that brings a modicum of relief is dental grade topical lidocaine. Tastes vile but eases the pain. Hope this helps someone!

Hi, @twentyfour7 -- welcome to Mayo Clinic Connect. I've moved your post over to this discussion, where you will meet many other members who also suffer from burning mouth syndrome (BMS).

Thank you for your suggestion for what's helped you a bit for pain relief with this syndrome.

It sounds like you have really intense pain? Is this something you've had for a long time, @twentyfour7?

Hello, Lisa- thank you for relocating my post. I have had BMS for 4 years, all of them most unpleasant. It began with an altered sense of taste then morphed into a continually flaming oral cavity. Not only does it burn, it also feels as though there is a battery in my mouth. Like the others in this group, I have tried a full compendium of options, including drugs, diet changes, dental adjustments,herbal remedies, homemade toothpastes, alpha lipoic acid, chiropractic, vibrational therapy , pain meds — all ultimately to no avail. The lidocaine provides a brief respite, but cannot be used long term.

Some days are worse than others, and nights are a challenge. I play a lot of solitaire at 2 AM....

Hello Twentyfour7, I can relate very well to what you posted. How do you take the lidocaine? Is it pill or capsule? Or perhaps a mouthwash?

Hello, @lauren123 - the lidocaine is in a gel form. You swish with it, or swab it in your mouth. Because it is a prescription, it’s more potent than your basic OraGel. The numbing effect calms the fire and lasts a few hours . Although I’m very sorry to hear you can identify with me, it is certainly helpful to talk with others who grapple with this poorly understood syndrome. Perhaps collectively we can work out the puzzle. I hope you find some relief— my ENT was the one who prescribed the gel.

Hello Twentyfour7, thanks for responding so promptly. Do your gums burn on a daily basis? I have been on this site since 2012 and the best way to get to know me is to follow my story. My pain worsens when I have sinus flare-ups. I also have Trigeminal Neuralgia and TMJ. This is a good site for people like us. I think people are helpful and sincere. Besides, our conversations are private.

Hi again, Lauren123, I am so glad to have found this site! You’re right in saying it’s a good place to share information for people with this miserable condition. No one else even faintly understands, not even the doctors I’ve consulted for evaluation and treatment. Most of them say they’ve never heard of it! Eventually we get forced down alternate paths in the hopes of finding something that works. My latest failed attempt was CBD oil— an outrageously expensive and useless product.

In answer to your question, yes, my gums burn all day, every day, but mostly on one side. My tongue is the worst, as it involves the entire thing. Occasionally my nostrils and lips get in on the action as well. I do not have sinus problems , or TMJ or any neuralgia that I know of. I was sorry to read of your multiple maladies. For me, the one odd thing that might be a clue is that I have sneezing jags multiple times per week. Once I start I sneeze anywhere from 20 to 45 times in a row. (Allergy testing was negative.)

So for now, I, as I’m sure you do, forge ahead, thankful to get through each night and hoping for distractions during the day. Try the lidocaine when it is at its most unbearable. I pray God will both comfort and heal you.