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Burning mouth syndrome? Help!

Posted , 3 users are following.

stella19032
stella19032

Hi, I've tentatively been diagnosed with burning mouth syndrome. My palate and the side of my tongue on the left are incredibly sore. Sometimes feels like a burn, sometimes like I've got a thousand tiny cuts that have had acid poured into them. I have no idea how to help myself. My gp won't do any tests and I feel they have abandoned me. The pain has been so bad recently that I've thought about ending it all. 

I have an ENT appointment on Monday and just want some ideas of what to ask him. I've seen two oral surgeons and both say my mouth is fine but it really doesn't feel that way.

I have reflux but am taking nexium twice a day for that. I've also asked for anti reflux surgery to see if that helps. 

I feel so alone. Talking hurts and I was a really sociable person but now I feel cut off.

Any tips or ideas of how I can confirm the diagnosis and so try and get some help would be greatly appreciated.

0 likes, 12 replies

12 Replies

  • Sinusprob
    Sinusprob stella19032

    Posted

    Wow, I'd never heard of it until now. Sounds brutal! I suspect the ENT will be of no help as I have found them to be pretty useless almost every time I've seen one. I imagine you've done your own research online and nothing has helped? I wish I could suggest something to help. I do have a little advice though on the nexium. I took it for years only to eventually discover that I had ulcers and once I was treated for the bacteria h pylori which causes ulcers my heartburn never returned. Stopping the production of acid in your stomach I believe will make you sicker long term and not fix your problem. Ask your doctor you want to be tested for h pylori if you have not been. Taking nexium twice a day which I had done for a while prevented food (protein) from being broken down and I began feeling worse. Best of luck and hope you get some relief soon.
    • stella19032
      stella19032 Sinusprob

      Posted

      Hi Sinusprob - I've had two gastroscopies and two h pylori tests and both were negative. That's why I'm looking at surgery, so I can throw those blooming tablets in the bin! 

      The ENT I'm going to on Monday seems better than others I've seen, but I'm fed up of them looking down my throat and saying "out of control reflux" when I'm on meds for it. 

      I'm booking a private appointment with an oral surgeon and going to ask for biopsies of my mouth just to put my mind at rest as I'm conjuring up all kinds of nasties at the moment! I'm going to end up massively in debt over this sad 

  • Sinusprob
    Sinusprob stella19032

    Posted

    Hi- hopefully someone else who has the same issues sees your post and can offer some advice that will help. I assume you're in the US as all of this is covered in Canada. Is there any possibility it may be your diet?
    • stella19032
      stella19032 Sinusprob

      Posted

      Hi there, no I'm in the UK and just fed up of being given the runaround by the NHS. I've looked into dietary causes but my gp says no. Stumped. :-/ 
  • joey2
    joey2 stella19032

    Posted

    Hi Stella19032 - I can honrestly say, I have found no relief from this Burning Mouth Syndrome after many years.  NO matter what I do, the pain in my mouth is always there to some degree.  Weight loss, special diets, streoids and supplements seem NOT to help.  The doctors/dentists do not know what causes Burning Mouth so not much you can do but try to manage the situation by NOT using or eating food/products that can irritate the situation....such as acidic foods, overly heated foods, or strong/alcohol mouth wash. Eventually, I developed PMR and I think the Burning Mouth Syndrome may have been a precursor warning that my immune system was getting out of wack. So sorry to hear of your suffering.  No one deserves this!
    • stella19032
      stella19032 joey2

      Posted

      Hi joey, I'm so sorry to hear that, as I know what you've been going through. I just wanted to ask if yours had a focal point at all? If I touch one part of my palate with my tongue it sends pain everywhere, plus feels weird there. I saw an oral surgeon on Friday and he couldn't see anything but it's made me completely paranoid as I don't know if this is normal. Plus sometimes it stings rather than burns. I'm contemplating getting someone else to look as I'm fearing the worst, maybe irrational but I can't understand why I can pinpoint a place in my mouth that sets things off :-/ 
    • joey2
      joey2 stella19032

      Posted

      Yours sounds so worse - you poor thing! I'd be worried too! The skin of the mouth tissue seems to get very thin because of whatever this malady is or does.  My guess, is that the nerve endings are more exposed so any touch can send pain. The problem with Burning Mouth is that it can move around.  Sometimes, on the roof of the mouth and gums then all of a sudden on the sides of the tongue or the whole tongue. Usually you will have a period where the pain is much more tolerable for some unknown reason.  You could have really bad acid reflux that is getting up in your mouth while you sleep.  Try putting a pillow wedge under you when you sleep so the slant keeps your stomach acid in your stomach through gravity.  Or putting small 2 X4 boards under the head board feet just in case it is something as simple as you sleeping straight and acid rolling up your esophagus into your mouth and burning the tissue. Wish, I could offer more but I am glad you are seeing the doc. Remember, you are paying the doc  - tell him to take a biopsy of your mouth tissue so you can rest your mind that it isn't cancer. Another thought - You may have a terrible allergy but then again, an allergy would give other problems all over your body.  Maybe, keep a food diary.  See if things get worse or better at any time. For a month or so, write on your calendar your level of pain 1-10. 10 being the worse. Maybe you could pin point times of the month when worse and through that find a clue of what is going on.  Could be a hormonal problem but who knows????  Be careful not to eat hard things like pretzels so your thinning skin is not torn.  Just see what works for you. It truly will be up to you to get through this. They just do not understand it yet.  Eat healthy and exercise (walking is great) just so you can fend off any other health issues that can develop.  I do suspect it is an autoimmune problem but then the docs do not understand them either. Something triggers our own system to attack itself. Rest, relax and do what ever makes you confortable and happy.  Keep busy so you don't have to constantly think of the darn pain.  You will adapt - you have no choice. I did. Good luck and please keep us all informed.
    • stella19032
      stella19032 joey2

      Posted

      Thanks Joey. Good to know I'm not going mad. Going to insist on a biopsy to put my mind at rest. I've done the anti reflux measures - our bed has about 4 bricks under each leg ! I too think it's auto immune. I think as long as I know I'm not ignoring something nasty I can cope. I've had a chronic pain syndrome in my right arm for 13 years which follows similar patterns. I don't take meds as they don't work and I manage it. I can do the same with this as long as I know it's not some lurking disease! I have an appointment Wednesday so hopefully I can get some answers then x
    • joey2
      joey2 stella19032

      Posted

      Read up on Polymyalgia Rheumatica. The pain starts in the shoulders. Thankfully you can get immediate relief through a steroid, Perdnisone, if that is your problem. Just keep a good attitude and live your life for others.  That way, you can forget about your own woes, at least for awhile. Please leyt me know how it all goes. My prayers & thoughts are with you.
    • stella19032
      stella19032 joey2

      Posted

      Hey Joey, I will have a look at that. Went to ENT yesterday and my left tonsil is much bigger than my right so they are sending me for an mri to see if its something nasty. I'm terrified to be honest. My mouth has been a little better today. I think it's my tongue that is causing the problem. I'm hoping I can get some answers tomorrow smile 
  • joey2
    joey2 stella19032

    Posted

    Stella - It is probably an infection but I am glad they are doing the MRI.  You are in my prayers.
  • heather70717
    heather70717 stella19032

    Posted

    I have had burning mouth for about 4 years now. I have thought it was acid reflux but doctors are not sure. However, I find great comfort in "Ice Breakers" Ice Cube gum. All others don't last and work the same. I spit out the gunk when I first chew it as it has monohomolomozominates in it. (My made up name for ingredients we can't read. I go through about 10 a day. It keeps the burning down significantly. Good luck. I know it is horrible. I HATE it and am having a really bad bit of it now. It seems to get worse and worse. 
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