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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@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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My user name is sheetrock0131

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Have had burning tongue for ver25,years everyday the same horrific pain. Lyrica helps, but find that wearing a very thin ,ightweight bite plate during the day keeps the jaw apart just enough to quiet the firing nerves.m takes the pain away instantly. The smaller the better as large ones too bulky, etc.

Also if allowed in your state s great for pain.

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Connielaine,
Thank you so much for getting back to me. I will take all the info you shared with me and bring it to my next app’t with a new dentist I’m seeing in June who can hopefully help with creating a bite plate as you’ve described it. I’ll also be contacting a Dr. Andres Pinto from Case Western who was recommended to me by a friend in NJ who is a dentist and has heard of him as someone who may also be able and willing to try to help with this. Will let you know how I make out.

Do want to share with you all that I did meet with an hypnotist in Rochester NY who was very empathetic and helpful.. he put me a most restful state of mind and made a CD of the session with me so I could use it as needed- I’ve done just that and it does bring relief even if not lasting. So important to find people who “get this condition.” I find one of the hardest parts is to socialize (over food) with people who even though they say understand, obviously don’t. This is something the fellow from Rochester said I need to work on-went out yesterday to share in a graduation party (over food) found I could eat nothing without incurring pain and had a mild meltdown… got back in control and stayed at the party but it was all so difficult being around people who don’t understand what you’re experiencing even though they are well intendioned.

Have any of you ever gotten together to actually meet each other somewhere? I would love to know if that is a possibility?
Also, I too am having difficulty contacting you all in the most expedient way. That being said would you mind passing this message along to sheetrock0131- as you, she’s been so kind in her many responses and sharing of thoughts.

Again, my thoughts and blessings to all of you; so impressed by those of you who have been coping with this for years- just 2 yrs. in myself and it feels like an eternity- the isolation that comes with this is devastating.

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Hi,
So happy to hear from you again. I really do not know how to contact anyone via this email.
I have an iPad and not too good with it. I really wish I had your phone number as talking so much better. Is that allowed.
I wanted to mention that I feel no pain when I am eating but must keep, the weight down. I suppose the painless eating is again the idea of keeping jaw apart. Right nowhere I am wearing my lower bite plate. My friend made me a few for upper and a few for lower. I rotate them sometimes.
Please let me know how to reach you, but in the meantime please reconnect with me.
Good luck.

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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I’m happy to hear from you.
I have no problem giving you my phone number.I just want to be sure it’s kept private.
I’ll try to contact Mayo clinic,and ask them about the privacy law..

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Maggie 45, thank you for the feedback. You are very expressive in your description of this condition. As to eating socially, I understand your situation very well. It does impact social relationships. My daughter’s wedding is coming up soon, and I’m very stressed about undergoing all the events, especially the wedding day. I am willing to be contacted by phone by you, but I don’t know how the procedure is set up. It does help to have people who are willing to share their experiences, but I’ve found that it’s difficult to find methods that work for all. Thanks.

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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I’m so happy for your daughter.
Don’t put to much thought into it.Sometimes we awfulize about things.
Be positive about the upcoming event.
You will be so preoccupied you won’t even notice.
Why don’t we try facebook.
I will friend you,and privately we can share phone numbers.
My name is Patty Cataldi,I’m sure that will work..Good luck.
Hope to hear back from you..

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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@sheetrock0131 and @lauren123, you can use the private message function to exchange phone numbers safely. However, I also encourage you to continue to share here on this forum as the benefit for many is strong and extremely valuable.
So glad you have found support.

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Are you suggesting we use messenger on an I-Phone? Thank you for the encouraging words.

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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You can private message right here on Connect. Here’s how:
1. Click the @username of the person you wish to PM. This will take you to their profile page.
2. Click “Send Private Message” on their profile page.
Happy connecting.

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I have a correction to my previous message: Instead of Crest Tartar protection tooth paste, I now use Jason Sea Fresh (Deep Sea Spearmint) as a tooth paste after meals or snacks. It takes away the bitter taste on my tongue from food, and it is milder than some toothpastes. I got it at a health food store. This Jason product may be available as a mouthwash, too.

God bless all of you. My prayer for you: That you may find solutions that are not extreme or costly.

It seems that doctors and dentists don’t have a clue–and I found that they tend to try medicines and procedures when they don’t really know what to do.

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@nanettehathaway

I have had neuropathic burning mouth syndrome since Dec. 2010. Most Drs. I’ve seen have never heard of it. I am on gabapentin and Lyrica, they are not working. Does anyone know of a specific Dr. who treats this disorder. I am in pain 24 hrs. per day, it is very SEVERE pain. Need help and a support group. HELP, NANETTE

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I agree as well.clonazepam is same as klonipin. It does help.
I don’t like taking it,but it seems to be the only medication that all burning mouth recipients use,in addition to cymbalta,or lyrica.
God bless all who suffer with this debilating condition.

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