Is anybody else troubled by sore mouth/tongue and loss of taste?

I have Raynauds and Scleroderma and just recently have been troubled by altered sensation in my mouth. It feels as if I have scalded my mouth (which I haven't) - tongue and mouth are sore and I haven't much sense of taste. I have been having reflux problems lately where my usual meds are not controlling the acid any more and my gp has now taken me off Omeprazole and put me on Esomeprazole. This seems to have controlled the indigestion pain but I'm awaiting an endoscopy to see quite what is happening. Has anyone else suffered from anything similar?

8 Replies

  • Oh dear sounds similar to my problems. Are your eyes dry as well? For some years I had times when my mouth drove me crazy. My doctor put it down to 'burning mouth'. I went to various specialists all the same answer. It became 24/7 and fortunately a new GP joined the dots and said he thought Sjogren's. This was confirmed. I found the Boitene mouth wash and toothpaste a help, but I still have times when it flares up badly. You could be lucky and what you have is just a passing problem! Good luck.

  • Hi adleybra, thanks for sharing, I have got sjorgrens syndrome, raynauds and schleroderma and i have got the same systems, I also flare up badly sometimes, although I have not tries the Boitene mouthwash and toothpaste it sounds like a good idea and i will be sure trying it out to see if it helps with my condition. Thank you and all the best.

  • Yes I have been there! Rest assured that it will go away but really annoying at the time. I just didn't want to eat - drank with a straw - it took the pleasure out of food as it was just tasteless. I thought it was a side effect of taking sleeping tablets (zopiclone). I really didn't get to the bottom of it - lasted a few weeks and then back to normal. Esomeprazole is great for reflux. I have been on it for years. Couldn't manage without it. I have regular endoscopies and I always ask for sedation - maybe I am a coward but I feel fine if I have the sedation!

    If you want to discuss my helpline is 07530 810 964


  • I have had both these things, same as you with the acid reflux and I have had the same sensations on my tongue, felt as if my tongue did not work properly. I was not sure whether it was the Raynauds or acid reflux. Very strange feeling though. It did got away eventually.

  • You probably have Sjogrens syndrome, which I have. The soreness may be due to thrush which can be a problem with a dry mouth. Have a word with your dentist I have regular checks at a Dental Hosp and have found their advice helpful with dealing with the soreness/dryness. If it continues your Dentist/GP could refer you.

  • I havent got Sjogrens but had a really horrible furry tongue a few weeks back. I actually found that I went off tea and coffee as it tasted awful.

    I made hot lemon drinks. Hot water and lemon juice. You can sweeten with some honey if you like. That seemed to change things in my mouth and after a couple of days the furry tongue was gone.

    It did look sort of thrush like but the lemon drinks seemed to deal with it.

  • I am putting up with dry eyes and dry mouth. My Rheumatologist made it very clear that I should liase with my dentist. Due to the worsening of Scleroderma, I have lost my top teeth, so it's important to have it checked. The endoscopy should reveal any damage to your orsophaegus , and also thrush. There is medication available, if necessary.

    Your endoscopy will reveal any problem you have. Take care.

  • My teeth starting tingling and food needed spicing up but it all associated with acute pain in the oesophagus. My thrush had returned a year after my last attack so I am on Nyastatin monitored by my GP and Rheumatologist jointly. My dentist advised soaking my denture in Milton too.

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