burning mouth syndrome

[smiile]

hi there. So I’ve been getting dry eyes and a dry sore burning tongue and mouth. GP did ANA bloods which were negative. I was thinking sjogrens syndrome or lichen planus (as I also get bad mouth sores.) Anyway dentist has referred me to Birmingham dental hospital and I’m now thinking it could be burning mouth syndrome.

Turns out it’s prevalent in us fibromyalgia sufferers so was wondering if anyone has similar experiences.

Thanks for reading x

[Animalover39]

hello I get dry eyes it’s horrible feel like my eyes on fire the symptoms have lasted months but come and go sometimes worse and night I was given eye drops hope you get some relief

[Polydor3 in reply to Animalover39]

Me too.

[Ladame]

Hi Smile, I have the same problem with recurring ulcers, sore tongue, dry mouth, lips always feeling dry. I read somewhere that a toothpaste without sls in it may help so I tried that and it helps a little. I eventually got to see an Oro maxillary specialist and of course no ulcers when I went to see him! He advised me to try an unflavoured toothpaste and that seems to help more than the Biotene I'd been using. He said some people are more prone to mouth ulcers than others and not a lot you can do. I also have rheumatoid arthritis and take methotrexate which the pharmacist said could cause ulcers but the rheumatology consultant said it wouldn't be due to that! So hey ho! Who knows? 😁 My dentist prescribed a mouthwash for me for when it's sore called Difflam and that also helps. Sorry for the waffle - hope you find something which helps you.

[smiile in reply to Ladame]

Yes, your experience is similar to mine. Oral max appointment was pointless as no flare up then and photos from dentist were inconclusive! She reluctantly did bloods because I pushed but as always they show nothing. Just going around in circles. Difflam helps me a bit too. What brand is the non flavoured toothpaste you use? I can’t use sls either. This new referral to dental hospital will be better I hope. 🤞🏼

Take care x

[Ladame in reply to smiile]

Hi, the toothpaste is called OraNurse.

[Animalover39 in reply to Ladame]

Hello hope your well I have had a ulcer on my bottom gum the dentist said she’s not worried which is good

I don’t like the dry eyes and the horrible pain I got at the beginning it’s now eased of but never goes I hope it goes all togeather and maybe if I try treatment it will work

[Gigiruth]

HI smiileI have Sjogrens and an autoimmune problem. Can't comment on the medical side but have found taking proitics a game changer. I get from Boots as many dodgy ones on internet.

Take care

Gigi

[smiile in reply to Gigiruth]

Thanks. Is that probiotics? I’ve heard that so much links back to gut health.

[Gigiruth in reply to smiile]

Yes Typo sorry.

[DjangoReinhart]

Absolutely. I was thinking Sjogrens too. I go to the dentist regularly and have no problems there. I guess it's just another one of those things that gets put down to fibro.😏

[Welshcatlady]

I suffer with a dry mouth caused by some meds I have. However I have had Lichen Planus since 2008, it didn't present itself in my mouth at first, I have it on my skin also. This was well before being diagnosed with Fibromyalgia. I see a specialist at Cardiff Dental Hospital, around every 3 months now things have settled down since Covid, in fact I have an appointment with him next week. He prescribes a spray which is the generic form of Difflam, which does help a bit. It flares up quite regularly and can't say that that is due to anything I have eaten or drunk.

[smiile in reply to Welshcatlady]

I hope your appointment goes well.

[Welshcatlady in reply to smiile]

Thank you.

[klr31]

Check your B levels.

Karen

[smiile in reply to klr31]

Hi. Thanks My B12 is normal on recent bloods but I have my doubts. Only my vitamin D was low and I’m now on supplements.

[klr31 in reply to smiile]

Often B vitamins need to be supplemented together as they balance each other out. I suggested B supplementation as I've read that if low it can cause mouth ulcers.

Karen

[Elaine200756]

Hi smiile, I am exactly the same. My GP prescribed eye drops for the dry eyes. Sometimes they help but if they are really bad, no. I have dry mouth almost all the time, so I doubled the amount of water I drink, which wasn't enough, and it does help.

I get sore, dry lips and use a nivea quench lip balm every day. It helps when applied but it needs to be continually re applied.

I get crops of big and small ulcers on a regular basis and for that I use adult bonjela which soothes and heals after a few regular applications.

I'm sure you have got several good tips here so I hope you find something that works for you

Take care xx 🤗

[blueisgreen]

What works for me is Biotine tooth paste, and the unflavored Closys mouth wash. If I don't have these available my mouth once again starts burning. I also have "geographic" tongue - something I was born with. It's a split down the middle of my tongue. No known cause and no cure. But with these products I can manage.