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Posted 11/17/2007 11:36 PM (GMT 0)
Hi all I am still suffering with my mouth situation. I am not convinced it's thrush like the dermy said my mouth is not like the thrush pictures I googled. It's more little sores on my tongue, cracks in my tongue and the roof of my mouth and tongue burn like they are scalded only they arn't. I have excellent dental care yet my gums still bleed when flossing.  I can't seem to find anything except ice to help the burning feeling. I am still taking my diflucan but I just don't feel like this is thrush. I have no problem eating that seems to be fine. I am so scared I have sjogrens I just came to terms with the lupus/uctd thing. How do people live with sjogrens and this mouth bruning. Does anyone else suffer from this sort of thing? My rheumy just said it's geographic tongue but I know there is more then that going on.

Anyone who can share their personal experiances with me I would appreciate it.

thanks

Posted 11/18/2007 3:25 AM (GMT 0)
Hello Again, Canuckgirl -

Sorry you are still having trouble with your mouth. A teacher at my school has the same type of burning mouth problem that you describe. It is awful for her so I can imagine how awful it must be for you. She was told to drink lots of fluids and to chew gum frequently. I remember her mentioning "geographic mouth" and, at one time, they said she had sjogrens but they say now that that is not it. I wonder if sipping on on a Slurpee or an Icee would be soothing for you? Good luck and you are in my prayers!
Posted 11/18/2007 3:50 AM (GMT 0)
Hi Canuck,

   I'm sorry as well that your still suffering with this...((Hugs)). The "Swish and Swallow" worked well for me, but I don't swallow it, I swish and spit. It will numb your throat if you swallow it.

  I really don't know if folic acid is what is helping mine but, I don't have this problem much at all anymore since I've been taking folic acid. I rarely get mouth and nose ulcers as well. My Sjogren's numbers a very high, Anti-SSA and Anti-SSB.

  I hope you get some much needed relief soon. Please keep us updated. You are in my thoughts and prayers.

                                                           Babs

Posted 11/19/2007 12:04 AM (GMT 0)
canuckgirl, the problems I've had with my tongue sound almost exactly like what you are dealing with. When it is at its worst, my tongue is covered in painful sores and I have cracks all over my tongue. The magic mouthwash I have of malox, benadryl and lidocaine is the only thing I have found that works. The lidocaine numbs my mouth and tongue and after a few days of using it, the sores usually get better. It's hard to know if you have Sjogrens. I haven't had the test for the antibodies for a very long time, but they were negative last time I had them done. However, my eyes and mouth are exceptionally dry, so my doctor says I most likely have it. I hope you are able to ask your doc for something else for some relief. Ask about the magic mouth rinse that the pharmacist can mix up. Hang in there.
Posted 11/19/2007 3:00 AM (GMT 0)

Thanks Hippi, I am just not sure what to do I can live with the pain and fatigue but this mouth thing really has me depressed. I just came to terms with having to slow down in life and that I need to nap daily and that I can't do a lot of things I used and now this I just can't come to terms with. Having sjogrens scares the heck out of me. When they told me I had UCTD/LUPUS I was  sad and shocked but I have a lady I worked with who has it so adapting to that was hard but I did it. But sjogrens I can't understand how people can get deal with that. I did try to get the magic mouth was but I live in Canada and I went to 4 pharmacies and no one has a clue what I am talking about. So I have just been using salt water and it's better a bit but now the roof of my mouth is a mess too. I have a bad cold and cough every 30 second so that is likely not helping. I think I must be starting a flare...... I am going to cry now... sad

Angela

Posted 11/19/2007 4:25 PM (GMT 0)
Angela, I feel so bad for you - I can tell just by what you wrote how miserable you are. You sound just how I do when I am ready to flare - I get really down and weepy. I wish I could give you a real hug, but I'll give you a cyber hug instead (((((Hugs)))). I'm sorry you couldn't find the magic mouthwash. Please try to get lots of rest and pamper yourself if you can. It really sounds like you are heading into a flare. I can't remember when you saw your rheumy, but it might be time to give him a call. I'll be thinking about you and hoping that you get some relief. Take care
Posted 12/29/2007 2:06 PM (GMT 0)
I am suffering from burning mouth syndrome as well. I don't know what is causing it (and neither does my PCP). My PCP is prescribing Zoloft, but I am not sure if that will help. Has Canuck found a way to get relief from this somehow? I am going to try folic acid supplements. Is there anything else over the counter (capsaisin?) that could help?
Any response is greatly appreciated.
Posted 12/30/2007 12:06 PM (GMT 0)
Hi angela, I was wondering how your mouth is doing now? I just went thru somthing simalar but I have a scar on my tongue from such a deep sore and that happened years ago. I just recently got a bottle of swish and swollow (nystatin). The pharmacist actually suffers from sjogrens and she said what works great for her is to buy a bottle of Malox which is in the nystatin and swish it around in your mouth and spit it out. Since you don't really need the malox. She swears by it. I used a little but mine wasn't that bad and it was gone quickly. I'm sorry you are goig thru all of this. I know how difficult it is. It's don't right frustrating. Hope to hear from you soon
love
carol

Anon you might try the malox too. I hope you feel better soon.

hugs

Posted 12/31/2007 12:09 AM (GMT 0)
canuckgirl,
I have had that problem on and off for years. It's not Thrush ... Both my doctor and dentist say that it's a deficency in Vitamin B12. If you double dose whatever the highest over the counter Vitamin B12 is for about a week you'll get rid of it. Whatever your body doesn't need it goes out through your urine so you won't hurt your body by taking too much. I finally quit fighting it and take Vitamin B12 everyday and I haven't had it in about 6 years now.

Good luck!
Posted 12/31/2007 3:58 AM (GMT 0)
Hi there,

Mine was thrush I took a course of diflucan and nyastin swish and it was gone in 10 days and has never come back. I get my b12 checked all the time and I am not deficient

 

Posted 1/2/2008 5:08 AM (GMT 0)
Thanks for the update! I used the same med combo when I had the same symptoms (it was thrush) a few years ago. It seems to take forever to get better! So happy to hear you feel better!
Posted 1/26/2013 4:34 AM (GMT 0)
Hi Angela, I can totally relate to your first post. When friends ask what the buring feels like I tell them the only thing I can compare it to is the heat and burning sensation you get from muscle creams that you rub into sore muscles... I have little lumps that run around the edge of my tongue, a severely dry, cracked and bleeding tongue, virtually no saliva... and the burning. I've been using a special mouth wash called Biotene dry mouth mouthwash, it's American made. If you look it up on the net you should be able to find out who distributes it in your country.. It's thick ( feels a bit like custard in your mouth) but is so cooling that it's like heaven! it contains enzymes like those produced in your saliva... I rince 3 times a day and it helps a lot.. I have found with my lupus that when it flares the opposite happens... my mouth is suddenly flooded with thick frothy saliva and my eyes get sticky and weepy... From one extreme to another :(
Posted 1/26/2013 4:57 AM (GMT 0)
Welcome Peanut,
You've found an old post from 2008, I don't think these people post here anymore.
Why don't you post you're own thread with an introduction?
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