Burning Mouth Syndrome. I have it very severe.

Posted by mygrigio @mygrigio, Aug 5, 2011

I am a 76 year old women and have had this condition for almost a year. it is getting worse everyday. been to many doctors and not one of them has heard otf it, I am getting desperate

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Thank you so much for the input! Excellent idea about the toothpaste... I will do that immediately. We are in a Rehab Center (due to hubby's nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash... and I think it does help. As to the oral surgeon... we did go to one and he said he doesn't treat TMJ or BMS ... then referred us to another dentist that bills himself as a "maxillofacial pain pathologist" ... very expensive and takes no insurance. Since we were already with a TMJ "specialist" who is willing to treat the BMS we didn't go to the "pathologist" yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it's eating into our life savings also! Again... thank you for answering me. It's so good to know there are others out there going through the same thing. I don't feel quite so alone. God Bless you!!!

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Hello @adkhs3333,

I'd like to welcome you to Connect, and assure you that you've come to a great place to find support. I'm confident that @sheetrock0131 @lauren123 @susanlcw @connielaine @maggie45 @dawn6604 @nanettehathaway @bonitav will join in with their insights, too.

Each year, Mayo Clinic experts diagnose and treat more than 180 people who have burning mouth syndrome, and Mayo Clinic in Rochester, Minnesota also has a Burning Mouth Syndrome Clinic, which has ongoing research to improve the quality of life for patients with this chronic condition. You can read more about it here: http://mayocl.in/2dcrO3F

@hcbb305, has shared some great options for relief; do you have any suggestion or tips for fellow members as well, @adkhs3333?

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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste... I will do that immediately. We are in a Rehab Center (due to hubby's nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash... and I think it does help. As to the oral surgeon... we did go to one and he said he doesn't treat TMJ or BMS ... then referred us to another dentist that bills himself as a "maxillofacial pain pathologist" ... very expensive and takes no insurance. Since we were already with a TMJ "specialist" who is willing to treat the BMS we didn't go to the "pathologist" yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it's eating into our life savings also! Again... thank you for answering me. It's so good to know there are others out there going through the same thing. I don't feel quite so alone. God Bless you!!!

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<br><br><br><br><br>For some reason Colgate is the worst for me.check ingredients- I think it is the sodium lauryl sulfate that causes me to react. Biotene mouth gel at night may be helpful as well.<br><br>

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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste... I will do that immediately. We are in a Rehab Center (due to hubby's nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash... and I think it does help. As to the oral surgeon... we did go to one and he said he doesn't treat TMJ or BMS ... then referred us to another dentist that bills himself as a "maxillofacial pain pathologist" ... very expensive and takes no insurance. Since we were already with a TMJ "specialist" who is willing to treat the BMS we didn't go to the "pathologist" yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it's eating into our life savings also! Again... thank you for answering me. It's so good to know there are others out there going through the same thing. I don't feel quite so alone. God Bless you!!!

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Have had bms 25 years-no real relief. Do believe it is strictly nerve problem-.try small plastic night guard during the day-removes the pain immediately. Believe it keeps certain affected nerves apart.

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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste... I will do that immediately. We are in a Rehab Center (due to hubby's nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash... and I think it does help. As to the oral surgeon... we did go to one and he said he doesn't treat TMJ or BMS ... then referred us to another dentist that bills himself as a "maxillofacial pain pathologist" ... very expensive and takes no insurance. Since we were already with a TMJ "specialist" who is willing to treat the BMS we didn't go to the "pathologist" yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it's eating into our life savings also! Again... thank you for answering me. It's so good to know there are others out there going through the same thing. I don't feel quite so alone. God Bless you!!!

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Connielaine, could you describe in more detail what this night guard is like? I wore one for years, but the dentist that made it retired. I can't find another dentist that knows how to make it. I really feel it made a great deal of difference in how I was able to function. Thank you so much for your help. I have also had bms for about 20 years.

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@bonitav

I've read that the burning mouth could be a B vitamin deficiency. I know when I don't get my B12 injection in a timely manner, I get a burning tongue. Has any doctor ever mentioned that possibility? Did some research and found this article from Mayo. Different issues identified here. http://www.mayoclinic.org/diseases-conditions/burning-mouth-syndrome/symptoms-causes/dxc-20179960

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It is necessary to have a vitamin B injection, or does taking vitamin B under the tongue work as well for you? I know there is controversy
on this topic. Thank you, Bonita.

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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste... I will do that immediately. We are in a Rehab Center (due to hubby's nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash... and I think it does help. As to the oral surgeon... we did go to one and he said he doesn't treat TMJ or BMS ... then referred us to another dentist that bills himself as a "maxillofacial pain pathologist" ... very expensive and takes no insurance. Since we were already with a TMJ "specialist" who is willing to treat the BMS we didn't go to the "pathologist" yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it's eating into our life savings also! Again... thank you for answering me. It's so good to know there are others out there going through the same thing. I don't feel quite so alone. God Bless you!!!

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Hi, the bite guards I have are wafer thin and small, so more comfortable. I got them many years ago, but sort of forgot about the help they provide. I Halppen to know a man who is in charge of dental department at a local small university.
He just recently made me 6 of them-two upper and 4 lower-not to be worn together, but to pick and choose. The material is very thin and he told me to trim them to my comfort, which I have been doing a little at a time.
He thinks by something between teeth it keeps nerves from connecting. Anyway when I have one in I feel NO pain. Even though they are thin sometimes feel a little bulky.
Anyway perhaps you could locate a dental college where they could make you a mold and a few plates. My friend tee he's students to make false teeth, crowns, etc.
Maybe you could check your computer for city college and ask about dental students.
Where do you live-I am in Miami.
Keep in touch, please.

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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste... I will do that immediately. We are in a Rehab Center (due to hubby's nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash... and I think it does help. As to the oral surgeon... we did go to one and he said he doesn't treat TMJ or BMS ... then referred us to another dentist that bills himself as a "maxillofacial pain pathologist" ... very expensive and takes no insurance. Since we were already with a TMJ "specialist" who is willing to treat the BMS we didn't go to the "pathologist" yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it's eating into our life savings also! Again... thank you for answering me. It's so good to know there are others out there going through the same thing. I don't feel quite so alone. God Bless you!!!

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Hi Connielaine,

Thanks so much for the prompt reply. Your description is very helpful. I will pass it on to my dentist, who also is a faculty member at a university.

We live in part-time in the Denver area so I will see what my dentist has to say. If I recall correctly, you also have trouble with your jaw. I have also been diagnosed with TMJ/TMD and see a chiropractor who is very helpful. He has consulted with a friend who specializes in neuro issues, and this has given him new ways to treat me. Some chiropractors I've seen have been no help because they don't understand this condition. Sound familiar? He uses a special technique, and I will find more information about it if you are interested. He uses a computer at each session and makes small adjustments according to the image. I also have arthritis around the jaw area. Previously, I went to another chiropractor who was making me worse, so its very important to find the right one. I'm very interested in complementary therapy. I hope you stay in touch as well! lauren123

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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste... I will do that immediately. We are in a Rehab Center (due to hubby's nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash... and I think it does help. As to the oral surgeon... we did go to one and he said he doesn't treat TMJ or BMS ... then referred us to another dentist that bills himself as a "maxillofacial pain pathologist" ... very expensive and takes no insurance. Since we were already with a TMJ "specialist" who is willing to treat the BMS we didn't go to the "pathologist" yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it's eating into our life savings also! Again... thank you for answering me. It's so good to know there are others out there going through the same thing. I don't feel quite so alone. God Bless you!!!

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I have found that the only toothpaste that works is Biotene. There is the fresh mint and the Gentle Mint. I think the Gentle Mint in the green tube is by far the most tolerable. I also use the mouth wash several times a day when I feel throbbing or burning. Another option is TheraBreath Dry Mouth Lozenges for flare-ups. I hope this helps. My issue is gum pain, so this might not be the right suggestion. Best wishes.

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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste... I will do that immediately. We are in a Rehab Center (due to hubby's nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash... and I think it does help. As to the oral surgeon... we did go to one and he said he doesn't treat TMJ or BMS ... then referred us to another dentist that bills himself as a "maxillofacial pain pathologist" ... very expensive and takes no insurance. Since we were already with a TMJ "specialist" who is willing to treat the BMS we didn't go to the "pathologist" yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it's eating into our life savings also! Again... thank you for answering me. It's so good to know there are others out there going through the same thing. I don't feel quite so alone. God Bless you!!!

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I really do not have tmj problems. My bms is located in rear mouth, but no pain when chewing. It gets stiff by pain area, so I take Ativan 3times daily. Hope you can obtain some of these tiny bite plates-if they feel tight you can trim them easily. You could check wherever they are studying to make false teeth and/or other types of dental needs.
Again keep in touch.
Connielaine

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