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Could this be sclero


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#1 betty32506

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Posted 14 June 2008 - 09:46 AM

:unsure: I have pain in my mouth and surrounding area. My mouth burn as hot peppers do, when I put anything in my mouth. My gums are easy to hurt and sometimes it is like a toothache. I can't find a toothpaste that does not burn. I use a baby extra gentle tooth brush and baking soda. The dentist was no help at all. My upper lip is so tight it hurts to open my mouth wide. It also gets scales on the surface. It flakes off in big flakes. The dentist thought I was wearing black lipstick. I had none on. I frequently use a lip balm. It makes swallowing difficult. The pain also seems to be between my ear on the right and throat.

Does this sound like sclero problems? It is getting to a point I feel I must see a doctor, but which one. I hate the idea of going to my general practitioner just to have him tell me what kind of doctor would this be. I have little or no confidence that the general practitioner would have any answers. I have several autoimmune problems and the rheumtologist indicates I probably have sclero and/or lupus. My next apt. with the rheumatologist is in August. Perhaps I should just move that apt. up.

Comments or such welcomed.
Thanks
Betty

#2 Shelley Ensz

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Posted 14 June 2008 - 10:43 AM

Dear Betty,

I'm sorry you are experiencing such mouth pain and hope you are able to find something to improve it!

You know how it is, of course, that none of us are doctors and I particularly don't have any medical training at all. But the pain you describe sounds unusual to me, even for scleroderma, which can cause so many things.

The Mayo Clinic has a page on Burning Mouth Syndrome and it lists many possible causes of such symptoms, including some things that are quite treatable, as well as some things which could be related to scleroderma, such as dry mouth syndrome and acid reflux, along with many things that aren't, including menopause and allergies.

So I'd suggest you see your primary care doctor about this right now. They can begin trying to narrow things down. In fact, I always start with my internist before going to any specialists, because it is amazing the wide variety of things they can resolve, without having to seek further care -- even when it is something due to rheumatic diseases (such as scleroderma).

In fact, many people have insurance that requires them to see their primary care doctor first. Mine doesn't, but good primary care (in the event of autoimmune conditions, try to make sure that is a board-certified internist) -- and *not* sitting on symptoms until you see a specialist, is a great way to get prompt care and also to save time when you do see a specialist (like rheumatologist).
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 truman

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Posted 14 June 2008 - 11:08 AM

Some of the things you describe sound like a vitamin deficiency. You really need to go the the general practitioner if the dentist has not provided any answers. Could also be you have thrush, although your dentist should have identified that.
Tru

It is what it is...........

#4 Snowbird

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Posted 14 June 2008 - 12:37 PM

Hi Betty

Welcome, I can't add any better advice than Janey & Tru already gave you. I hope you keep us updated on how you make out with your appointment(s).
Sending good wishes your way!

#5 betty32506

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Posted 14 June 2008 - 12:38 PM

Thanks for your responses. I had checked out the reference to burning mouth syndrome and I have several things on that list that could be responsible. The way my upper lip seems too tight and the difficulty swallowing made me question the sclero or not.
Betty

#6 Helen

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Posted 14 June 2008 - 03:01 PM

Hi Betty

I too have trouble with my mouth. It doesn,t sound as bad as yours though. I had to get a small soft toothbrush and the toothpaste really burns. Also if I eat anything hard it makes a mess of the inside of my cheeks and inside my bottom lip. Sometimes I get patches of white stuff in my mouth also. Haven't mentioned it to my doctor as it comes and goes. I thought it might be from the prednisone...am on 5mg...as it was really bad when I was on high doses.
I am seeing my rheumatologist next week so will ask him about it then.
Hope you get some relief.

Helen

#7 betty32506

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Posted 14 June 2008 - 05:56 PM

Hi Helen,

I does sound like some of the same thing. But I don't have any patches. At first I had small blisters like fever blisters but they did not ulcerate like they do. The dentist was interested to that. I didn't give the dentist credit in my first post. We discussed burning mouth, diabetes, dry mouth, medicines, and others. He said he would look in to it and call me. That he did but had no conclusion.

The worst part of the problem I did not mention. The really bad part is that at the underside on the root of my tongue there is a very sore spot. Suddenly I move my tongue in a way that triggers a really bad pain. Even talking can do it. The louder I talk the worse it is.

Have you looked into thrush, a yeast problem? That causes patches?

I rather think mine is a neuropathy problem. One thing that neuropathy does is causes pain not in keeping with what it should be. Sorry I forgot the word for that but it would be like on a 1-10 pain level something that should hurt on a 1 level would be 8 or 9.

I bought a child's bubblegum flavor tooth paste but that burns also. Many foods burn me, even bananas and others that I would not guess. Food really sticks to my mouth.

I would like to know what the rheumatologist says. Here is hoping it is good news.

Thanks for your response.
Betty