Burning Mouth Syndrome. I have it very severe.

I am very sorry for you to be going through so much pain. Have you been to a dentist? They seem to be much more familiar with BMS. My son did go to a doctor with this condition but after multiple tests there was no diagnosis. When he mentioned his burning mouth to a dentist Magic Mouthwash was prescribed. It is a compound made up by a pharmacy and the ingredients are used to suit the patient. It is very important that the mouthwash is prescribed specifically for you. My son took a dose of the mouthwash in the morning and evening after he brushed his teeth and he was cured. This may seem very simplistic as your condition seems much more severe. One ingredient sometimes used in the mouthwash is steroids which I would be very careful with as my daughter is now going through the extremely painful and debilitating condition of Topical Steroid Withdrawal which is caused by over use of steroids which she was prescribed by her doctor for eczema.

I’m 55 and have a severe case of Burning Mouth as well. I’m going on three years and no significant relief. I’ve been to every doctor and have tried so many medication. I’ve seen doctors from John Hopkins and Georgetown in DC and still no results. The only temporary relief I get is mixing a few drops (as hot as you can tolerate) of Tabasco Sauce mixed with water and rinse your mouth out with it. I know it not conventional but it does give me about an hour of relief. If you try it and it works, please let me know (one of my doctors suggested it).

Hi looking see if anyone could help me. My gp was late diagnosis hypothyroid. Can’t sleep have history anxiety depression. New thing I’ve started to get is my hands inside out my body shakes. Although I’m hypothyroid I’m only 7stone. My feet burn my hand hurt. Either on fire or freezing cold. No one seems have any answers. More importantly no one understands

My right hand just now.

My hands are very hot on most days, I sit with a cold pack to cool them down. We have thyroid problems in our family of all kinds yet my thyroid numbers are always good when I get blood work done. No one has the answer for me either………I am hoping Mayo Clinic might……

Mayo has a clinic for this problem. I developed this after getting 2 ostomies ( go figure) . My doctor at next visit will do lab work and then I go to clinic. I find a cough drop- ricolla- helps temporarily.

I am looking into seeing if MLS Laser Therapy will help with my degenerative disc disease in my neck. If you have started yours can you tell me what you think of it. Does it help?

Hello, rgpadilla.
I know your post is almost 3 years old now. I’m hoping you have found some ways to help your BMS. This syndrome showed up for me after receiving chemo/radiation for base of tongue CA. I thought it was still the process of healing but it never went away and actually got worse. I’ve tried a whole slew of options to minimize the pain. Nerve blockers and pain meds. My body is super sensitive to meds so while strong dosages may work for some, the side effects of the stronger meds prevent me from taking them more than a few days/couple weeks. It becomes what evil symptoms do I want to deal with? The BMS or the side effects of meds that seem to help very little. And that very little is significant when it comes to pain, but the extreme nausea/vomiting, disorientation, confusion, heart racing issues, extreme fatigue, etc are no better. So for me I revert back to plain Percocet that can give me MINIMAL relief for a very very short period of time; maybe an hour or two at most. And you’re spot on when you say the nighttime is the worst. I constantly wake up screaming in pain. My nights are restless. My job requires me to talk frequently throughout the day. And I’ve been amazed at the level of fatigue pain takes on your body. This condition is debilitating. And I’m with everyone who has considered whether this is quality of life. I had a complete breakdown in my pain management appointment last Thursday. I’m tired of being in pain. I’m mentally exhausted and angry when someone asks me how I’m feeling and I tell them how I honestly feel and their response is “well you look great”. I’ve had to run to the bathroom and cry because comments like that dismiss how I’m feeling. And how could I feel so bad when I “look” so good? I lost 80 pounds during/after treatment. I’ve gained 5 back. I had the PEG tube that failed during treatment. My body didn’t reject the tube but my stomach, for whatever reason, couldn’t handle the introduction of fluid into the tube. Even the smallest amounts I would throw up. Just now 3 years later I’m able to smell chocolate and vanilla. It is hard to understand there isn’t more research and treatment options for this condition. I’m 53. I can’t imagine living the rest of my life like this. I can assure everyone that if my BMS is still this bad 20 years from now, I sure hope there is a “Right To Die” law in place. I’m certainly not going to want to deal with this in my older age. There are many days where I feel it’s impossible now. I’m not going to want to make any effort to live in pain with the limitations that naturally occur when a person ages. And I’m not going to keep putting my wife through my anxiety and depression in our later years. And if she has passed, I’m 1000% not going to put my friend caregivers through it.
I’d be interested in knowing the mortality rate of people who simply couldn’t take living with this condition. Would that make research and treating more of a priority. And another sucky circumstance is fighting with insurance companies over how much pain medication and how often. I can’t imagine how that’s going to change when I get to my Medicare years.

Sorry for how depressing my note became. But I think most of us with BMS can at least partially agree this is where we go mentally because it’s a pain that no one can see and therefore reactions from people seem to dismiss the severity of what we feel. Good luck to everyone who deals with them. If someone has a magic “cure/relief” please share. Keeping fingers crossed there will be a breakthrough. I hope we are all around to receive that goodness.

I’ve had BMS for 17 years. Over time it’s gotten easier to live with. If my sinuses are hurting I get bad flares where I just want to curl up in a ball and not do anything but I force myself to keep going. However, the rest of the time it’s much more bearable.

I have Hypothyroid,I go to a specialist only deals with thyroid & he placed me on Levofloxacin and it is under control.If one doctor can't help you go else where. Do not messaround when it comes to thyroid please! keep me informed & good luck.