Yes! And I have talked to many doctors who have been part of my base of tongue cancer treatments over the last 4 years. None have had any experience with BMS and no one has a cure or effective treatment. I’m on pain medication to help me manage through the day. And that’s all it does it gives me an opportunity to get out of bed. But most days the pain is so bad I want to crawl into bed and never come out. All I drink is water. Foods are bland. It interrupts my food intake and overall quality of life. How can we not have any doctors anywhere in the world that can effectively treat this.

Those of you who say you get used to it must not have it as severe as I do. I can never get used to this.

I’m sorry I don’t have any solutions for you other than to say I empathize.

I think mine started with GERD. Generally if I keep it under control my tongue doesn’t burn as much.

Yes, I feel it in my throat as well and roof of mouth. Sometimes it’s like the roof of my mouth has small cracks . Also, I’ve noticed I can no longer feel when something I put in my mouth is too hot.

Did you try sulfracrate for your stomach

After suffering with burning mouth, burning tongue, burning tooth, metal taste, I had an esophagus scope and I was finally diagnosed with reflux and Barrett’s. First I will tell you it isn’t instant relief with treatment but yes treatment for reflux can relieve Burning mouth, etc. I was prescribed 40 mg of a ppi twice daily. I started with pantapazole ppi ( had swelling in ankles and feet so changed to Prilosec. Prilosec OTC 40 MGB twice daily, proscription for sucralfate liquid 10ml 30 minutes before meals and before bedtime. Baclofen 5mg 4 times daily last dose at bedtime 30 minutes before taking last dose of sucralfate. At first I woke up in middle of night with burning so I washed my mouth out, took a drink of water, and then took an extra dose of sucralfate liquid. I began to notice after a couple of weeks the sucralfate dose I took in middle of night slightly helped my burning. After 30 days I began to notice a little less burning. At 60 days of treatment I was having many periods during the day without burning which was wonderful and continued to improve the burning. I developed a cough and nasal drainage and switched from Prilosec to Nexium OTC 40 mg twice daily. No coughing. Nexium seemed to work even better than Prilosec. I am 4 months out now and it’s unbelievable how much better I am regarding burning. I use the sucralfate before I go to bed. I use 5 mg baclofen 4 times a day. I take Nexium 20 mg twice daily-first thing in morning and an hour or so before bed and two hours after any food. I only drink water sometimes heated up in microwave. I follow all the guidelines for living with reflux. I have the raised slanted foam pillow on my bed that lefts up my upper body or you could raise head of your bed 6 inches. I don’t eat late meal. I only eat light meals. I stay away from fatty foods. If the burning breaks thru during the day I take a pepsid complete chewable. I had no idea I had reflux as I never felt anything come up my esophagus or into my throat. I was told reflux can be silent. I know what it feels like to have a hot burning mouth and it hurts. I encourage you to visit with your doctor. My doctor had no hope that reflux treatment would stop my burning but he was wrong. He is thrilled I am feeling better. In the beginning I did go to the energy room and the PA ended my burning before I left there. It was wonderful my body was so peaceful. She recommended the upper esophagus scope but I did not immediately have that done because I did not think I had reflux. I was wrong. I think coating the esophagus with the sucralfate liquid is beneficial but like I said….it takes a good 30 days at least for me to start getting relief. Now I smile more. My body is relaxed not putting up with so much hot mouth burning. Good luck!