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mygrigio (@mygrigio)

Burning Mouth Syndrome. I have it very severe.

Skin Health | Last Active: Aug 21 6:09am | Replies (547)

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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.

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Replies to "Hello, rgpadilla. I know your post is almost 3 years old now. I’m hoping you have..."

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.