Burning mouth syndrome

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Emeraldeyezz

New Member
Hi everyone! I’m new here. I recently have begun to learn about TMS by reading Dr Sarnos books after discovering Nicole Sachs. I just finished “The Way Out” and it was amazing. I am currently dealing with burning mouth. It moves all over my tongue and gums, sometimes on bad days it’s on the back of my tongue making me gag and it is horrible. I am a mother of 4. I homeschool, my husband and I own a business and this has thrown my life upside down. I know I was under an Intense amount of stress and I know this will be one of my life’s biggest gifts eventually, but it is HARD. I am already suffering from health anxiety. I have had it since I was a kid. I have childhood trauma from a father that had borderline personality disorder and was abusive mostly verbally. My mother has horrible health anxiety after watching her father die right in front of her at 8 years old from alcohol induced liver failure. Anyways, after the birth of my 4th baby(who is a very spirited child, very high needs and intelligent), I dealt with recurrent mastitis from a poor latch that I tried everything to fix. I was sick every other week for over a year with mastitis. I wanted to give what I thought was my best to my baby because of Covid and everything else. Once the mastitis wasn’t an issue anymore, BAM. Burning mouth comes on after a deep tissue massage. It is horrendous for a person without health anxiety. I have so many responsibilities and I am in such pain it’s hard to deal with it all. I fully accept that this is TMS as I’ve been to every specialist there is and no one can tell me anything aside from a naturopath that thinks I have mold issues in my home(which I don’t, my home is brand new and has been checked thoroughly). I’ve tried all the supplements, I refuse to take pharmaceuticals as there is no issue that anyone is seeing that would be helped by them anyway. I tried an SSRI and it made me feel awful so I got rid of it. I’m in a particularly bad flare right now and my mouth feels like it’s just in flames. I am trying SO HARD to ignore it and I know it’s TMS but it terrifies me. I break down crying serveral times during the day and have awful anxiety all day every day. I worry I can’t get out of my own way and just accept this and move on. How does one accept and ignore something that reminds you of it every time you speak, drink, eat, or are just sitting there? It’s horrible. Does anyone have any advice? I feel so desperate and I feel like my life is being robbed from me.
 
Hi, I’m so sorry you’re suffering. I’ve been there. Feeling like your “life is being robbed from you”? I felt that in my soul. I am still suffering but in different and more creative ways now lol but I know one day I will be TMS free. I “had/have” atypical trigeminal neuralgia (really just TMS). I’m a young mom with lots of responsibilities also. I understand the way facial pain takes over your life in every way. Mine came on after a horrific year of fear and non-TMS health issues. I had burning mouth as part of the whole facial pain thing. It would feel like a lit match would be pressing on different parts of my mouth. Also like my face was melting off. Burning sensations are pretty common with TMS. Yours just happen to be in your mouth. It’s definitely TMS. You can recover, I did. The key for me was “being okay” with the pain. Accepting that this terrible sensation that I’m feeling is NOT physically dangerous. It sucks…really, really bad…but it’s not a problem with my body. It’s a problem with how I think. Accept that the pain is here for now and give it NO emotion. Don’t be angry, don’t be sad, don’t be scared, don’t try to get rid of it. Look at it like a guest that has overstayed their welcome but that you still have to be awkwardly polite to. That’s what worked for me. I am 98% facial pain free now. Occasionally I have a tingle in my face somewhere or a toothache etc. and I just say to my brain “cool story bro” and move on with my day. The pain or sensation goes away. Also, maybe check out “unlearn your pain” by Dr. Shubiner. That one was my favorite and the most helpful in terms of “action”. There’s lots of other neat stuff out there as well that’s not TMS stuff but is helpful in revealing destructive thought patterns. Just start browsing around you’ll find tons of interesting books and workbooks that tackle what’s going on in our brains. We TMS-ers internalize SO much stuff, it’s good to get it out. I recently asked my non-TMSer husband what he thinks about in a day and let me tell you…it was way different than me! My internal dialogue needs improvement let’s just say that. Above all, don’t be afraid! You will get better :)
 
Nicole Sachs has talked about having burning mouth syndrome herself on some of her podcasts. It’s TMS! I hope you find some relief from it.
 
Skylark said:
Hi, I’m so sorry you’re suffering. I’ve been there. Feeling like your “life is being robbed from you”? I felt that in my soul. I am still suffering but in different and more creative ways now lol but I know one day I will be TMS free. I “had/have” atypical trigeminal neuralgia (really just TMS). I’m a young mom with lots of responsibilities also. I understand the way facial pain takes over your life in every way. Mine came on after a horrific year of fear and non-TMS health issues. I had burning mouth as part of the whole facial pain thing. It would feel like a lit match would be pressing on different parts of my mouth. Also like my face was melting off. Burning sensations are pretty common with TMS. Yours just happen to be in your mouth. It’s definitely TMS. You can recover, I did. The key for me was “being okay” with the pain. Accepting that this terrible sensation that I’m feeling is NOT physically dangerous. It sucks…really, really bad…but it’s not a problem with my body. It’s a problem with how I think. Accept that the pain is here for now and give it NO emotion. Don’t be angry, don’t be sad, don’t be scared, don’t try to get rid of it. Look at it like a guest that has overstayed their welcome but that you still have to be awkwardly polite to. That’s what worked for me. I am 98% facial pain free now. Occasionally I have a tingle in my face somewhere or a toothache etc. and I just say to my brain “cool story bro” and move on with my day. The pain or sensation goes away. Also, maybe check out “unlearn your pain” by Dr. Shubiner. That one was my favorite and the most helpful in terms of “action”. There’s lots of other neat stuff out there as well that’s not TMS stuff but is helpful in revealing destructive thought patterns. Just start browsing around you’ll find tons of interesting books and workbooks that tackle what’s going on in our brains. We TMS-ers internalize SO much stuff, it’s good to get it out. I recently asked my non-TMSer husband what he thinks about in a day and let me tell you…it was way different than me! My internal dialogue needs improvement let’s just say that. Above all, don’t be afraid! You will get better :)
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Hi! I’m so glad I’m not alone. This is miserable!! It makes you feel like you’re going insane and seemingly, no one gets it. Do you mind if I privately message you?
 
Emeraldeyezz said:
Hi! I’m so glad I’m not alone. This is miserable!! It makes you feel like you’re going insane and seemingly, no one gets it. Do you mind if I privately message you?
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Of course, feel free to message me!
Oh I know that feeling well. I often think that living in chronic pain is like being tortured, mentally and physically, and it feels like there’s no end date. I don’t know where I would be right now if I hadn’t stumbled on this forum while searching for anything that could help me.
 
Celayne said:
Nicole Sachs has talked about having burning mouth syndrome herself on some of her podcasts. It’s TMS! I hope you find some relief from it.
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I just listened to this...INCREDIBLE!!!! I am now even more confident that I will be able to work through this issue! Truly great information!
 
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