Secondary Burning mouth syndrome ?

[katie3]

Hi All,
Another question regarding sore painful ( roof ) mouth.......  The area behind my front teeth is puffy and soooooo tender and sore , also so are the ridges to speak..... actually effecting my speech....... I saw an ENT THE
other say and he called it  burning mouth syndrome in addition to the Sjogrens ( so bummed.. apparently one of the best in the nation at a teaching institution )..... I also just saw an Oral Surgeon who is treating me with Clotrimizole Troche ( HONESTLY I DONT THINK ITS YEAST ). I am to do that for two weeks. I have a follow up on three weeks....
He was discussing biopsying it if no difference...... Has anyone heard of Secondary Burning Mouth..... ?? I feel like I am just stuck like this.... I am desparate to get the swelling down... its been months...... Oral surgeon says it may be the Sjogrens but that he'll help me ...... As always .. I would love any input....... This is way more than just my sore tongue and throat......

Thank you , Thank you..... Katie

[hayley3]

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[Bigleyj]

Hi Katie

I know that burning pain. Before I was diagnosed with sjogrens  I thought I must have burning mouth. Once I was diagnosed my rheumatologist told me I had oral thrush and put me in medication.  It didn't help but I perservered for 4 weeks. At that point I went to the dentist who said I did not have oral thrush. He said the burning was from severe dry mouth. As soon as i stopped taking the thrush medication and started using dry mouth gel and substitute saliva it got far better. Not fixed but bearable.

Up until that point i was barely eating because of the pain and, yes, I could not speak properly either.

Oh qnd sip sip sip wayer all the time.

I don't know if this helps you but I wanted you to know yoy are not alone with that buring pain in mouth.

I still have dry mouth and swelling in my mouth but nowhere near as severe.

All the best.
Jo. 😀

[Kathy57]

katie3,

There is a very simple test that they can do to test for thrush in the mouth that involves a simple oral swab, but most doctors don?t do it.

You think they would!  My heart goes out to you because I think we have all been in a similar place.
Don?t give up because dealing with it will take trial and error, but you will become better at it.  You will get better at this but it will be an ongoing battle.

Remember that you have all of us here.  Lots of combined wisdom and advice.  Evoxac helped me and also dealing with my chronic thrush.  (Yes, I did test positive for it, even after I had just been treated for it). With our mouths being so dry, we are prone to it.

Hang in there❤️

Kathy

[cccourt1942]

Hi Katie,
     I have zero idea why someone termed this "secondary" burning mouth.  Secondary to sicca, sjogren's, thrush----etc.  A silly, haughty label.  Burning mouth has to hit people before SjS dx....or people with dx who have refused one or more of the oral medications for dry mouth.  I don't say that because mine came first (which by the way was NEVER dxed by the ENT, the GP, dentist, or Rheumy).  I was NOT dxed 30 years ago.  I was diagnosed nearly 4 years ago.  I, too, lost weight, ate puddings, soups, and anything else cool and soft:  cottage cheese, yogurts, etc.  Had my gallbladder stuff during this time so couldn't eat (physically--don't because directed) due to g'bladder.  Once it was out, I refrained from ice cream.  Anyway...I was diagnosed with burning "tongue" by a dentist in another town who learned I had been dxed with SjS.  She ASKED me about my tongue.  I couldn't believe it.  I told her, and she said, "Uh huh...it's burning tongue.  She gave me the name of a product which will NOT cure it but will relieve your intense pain.  Orasoothe.  It is available thru Amazon, or you can call the headquarters in Grand Prairie, TX.  Shipping is about the same if I recall correctly.  It is a simple, natural product...something like cloves, cinnamon, ginger, etc. 

   You gargle the product for X amount of time, and they say to swish, then swallow.  I always spit it out.  I had just realized I had been suffering thrush along with the tongue stuff....and didn't want to swallow.  I was not treated (nor diagnosed) with thrush.  No doctor or dentist would have ever seen it as I would wash the roof of my mouth with a clean, soft washcloth.  It would reappear every few days to a week.  I went thru both for about 3 years before I started SjS meds and the Orasoothe.
       
    The Orasoothe is a product formulated for oral cancer patients...post chemo/radiation of said patients.  The out of town friend/dentist has a large number of those patients along with SjS patients.

     I used it about 4 or 5 months (daily) before I used it a couple of times a week.  It will burn the dickens out of your oral cavity.  You do it two or more times a day.  By about day 4 or 5 the intensity lessens, etc, and so forth.  Then, it's just like a mouthwash.  If you think you have  it conquered, it will come back. 
   
     About a year after my SjS dx I was placed on low dose prednisone.  For a year I was on 5 mg daily.  Now I am on 3 mg daily.  While on 5, I had no tongue irritation.  However, during that time, my dentist dxed me with fungus in the corners of my mouth.   I use Rx of Nystatin on that irritation.  It comes on regularly.  I take the maximum amount my rheumy allows of pilocarpine.  I wasn't always on the amount I take now, as it tore my stomach up.  My mouth was PLENTY moist tho. It took me nearly two years to work up to comfortable level.  I hear so much good about Evoxac I am thinking of changing.  My oral cavity dries out much too fast after my nightly dose.

   When I joined this site, I think one person asked about burning tongue/mouth the first year.  THIS last year it seems it comes up a couple of times a month.  Your eyes and mouth hurt for a LONG time before you think something is wrong with you...thus to ME...my burning mouth would've been primary...or my "bleeding" eyes were primary to Sjogren's. 

Good luck, welcome here....and hope you find relief.

Courtenay