Burning Mouth Syndrome (BMS): Anyone found any relief?

In 2012, my mouth and tongue started burning, as if I was holding hot coals in my mouth. Most general practitioners and dentists have no experience treating patients, with this painful affliction. I have also found that ENTs and Neurologists, have little, to no experience either. I suck on ice all day. Diphenhydramine offers a little relief, but then, I am over-sedated. I chew gum containing xylitol, until my jaws ache. Gabapentin worked for 14 months, then stopped. Increasing the dose, has had little to no effect. I am going to see a new Neurologist to discuss the possibility of oral nerve blocks. I am desperate, as I have been suffering alone, for so long. Am I the only one in the Chronic Pain Support Group, who suffers from Burning Mouth/Tongue Syndrome? Am I alone in this kind of suffering? I also suffer from CRPS. In my pain experience, if given the choice, I would choose feeling the pain of CRPS, over the constant, unrelenting mouth and tongue burning. But, I have no choice, I feel the pain from both life-ruining diagnoses and I am so desperate!

In 2012, my mouth and tongue started burning, as if I was holding hot coals in my mouth. Most general practitioners and dentists have no experience treating patients, with this painful affliction. I have also found that ENTs and Neurologists, have little, to no experience either. I suck on ice all day. Diphenhydramine offers a little relief, but then, I am over-sedated. I chew gum containing xylitol, until my jaws ache. Gabapentin worked for 14 months, then stopped. Increasing the dose, has had little to no effect. I am going to see a new Neurologist to discuss the possibility of oral nerve blocks. I am desperate, as I have been suffering alone, for so long. Am I the only one in the Chronic Pain Support Group, who suffers from Burning Mouth/Tongue Syndrome? Am I alone in this kind of suffering? I also suffer from CRPS. In my pain experience, if given the choice, I would choose feeling the pain of CRPS, over the constant, unrelenting mouth and tongue burning. But, I have no choice, I feel the pain from both life-ruining diagnoses and I am so desperate!

Hello @grammargal. I am sorry you have been dealing with this for so long. I wanted to quickly connect you to others who have shared their experiences to let you know you are not alone, so you will notice I have moved your post here:
- Burning Mouth Syndrome (BMS): Anyone found any relief?: https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/

Members @dustycat52 @btsum68 and @joybringer1 have previously shared and I also see that member @gracie71 has already joined you with a response.

When is your appointment with your new neurologist?

I also suffer from BMS brought on when an endodontist gave me a shot that injured the trigeminal nerve. That was 6 very long years ago. Gabapentin helped in the beginning as did oral Clonopin and Lyrica. Then their efficacy
wore off. Cymbalta has made some improvements. The nerve damage also radiates on one side of my face and lip. I'm so sorry for your pain because I understand. It has been a life altering event that most people don't have a clue about much less compassion. These are things that have helped me: dental gum sticks, dental floss, toothpaste for sensitive teeth, ice packs, heat packs, lidocaine, Benzo-gel, ice cream and for some unknown reason (for me at least) peanut butter milkshakes. I also drink ice water constantly. I've been told that CBT is helpful as would be medical marijuana. I've been to countless doctors and dentists and pain clinics. It seems like the pain has a circadian rhythm to it worsening in the afternoon into the evening. The pain causes such exhaustion. A good acupuncturist may be able to help you.

In 2012, my mouth and tongue started burning, as if I was holding hot coals in my mouth. Most general practitioners and dentists have no experience treating patients, with this painful affliction. I have also found that ENTs and Neurologists, have little, to no experience either. I suck on ice all day. Diphenhydramine offers a little relief, but then, I am over-sedated. I chew gum containing xylitol, until my jaws ache. Gabapentin worked for 14 months, then stopped. Increasing the dose, has had little to no effect. I am going to see a new Neurologist to discuss the possibility of oral nerve blocks. I am desperate, as I have been suffering alone, for so long. Am I the only one in the Chronic Pain Support Group, who suffers from Burning Mouth/Tongue Syndrome? Am I alone in this kind of suffering? I also suffer from CRPS. In my pain experience, if given the choice, I would choose feeling the pain of CRPS, over the constant, unrelenting mouth and tongue burning. But, I have no choice, I feel the pain from both life-ruining diagnoses and I am so desperate!

I also suffer from BMS brought on when an endodontist gave me a shot that injured the trigeminal nerve. That was 6 very long years ago. Gabapentin helped in the beginning as did oral Clonopin and Lyrica. Then their efficacy
wore off. Cymbalta has made some improvements. The nerve damage also radiates on one side of my face and lip. I'm so sorry for your pain because I understand. It has been a life altering event that most people don't have a clue about much less compassion. These are things that have helped me: dental gum sticks, dental floss, toothpaste for sensitive teeth, ice packs, heat packs, lidocaine, Benzo-gel, ice cream and for some unknown reason (for me at least) peanut butter milkshakes. I also drink ice water constantly. I've been told that CBT is helpful as would be medical marijuana. I've been to countless doctors and dentists and pain clinics. It seems like the pain has a circadian rhythm to it worsening in the afternoon into the evening. The pain causes such exhaustion. A good acupuncturist may be able to help you.