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The Australian Sjögren's Syndrome Association
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Burning tongue

Hi I haven't been around for almost 2 years! Been taking care of my Hubby with cancer and Alzheimer's! I have Sjogrens and APS, RA, Pokycythemia, & Gerd! I imagine they all go together! I had this burning tongue b4, but this time I can't eat anything without it burning! It feels like Jalapeño peppers on my tongue! Mostly the tip!

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It really sounds like you are going through the mill caring for your hubby and coping with this cluster of serious conditions yourself. I do know that burning in the mouth (BMS) can be a Sjögren’s thing and I too suffer from it - although in my case it’s mainly in my gums and lips - but also very slightly affects the tip of my tongue.

I think, in my case anyway, it’s neuropathic because Sjögren’s causes me to have small fibre neuropathy everywhere. But you should get yourself checked for oral thrush and B12 deficiency.

If it is neuropathic then can’t really suggest treatments that will stop it but there are nerve gating agents that can work as pain relief for it.

The one I’m on is called Carbamazapine - which is is an epilepsy drug licenced to treat Trigeminal Neuragia. Sometimes this kind of neuropathy is considered to be an atypical Trigeminal Neuragia - which can explain the BMS of Sjögren’s I believe. Anyway it makes me very sleepy but it does help a bit - although I’m still only on a low dose.

Take care,

Twitchy

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Hi Twitchytoes! Thank you it's been a long time! Went to doctors today and he said my immune system is breaking down! He said since in not sleeping much! Average 3-3&1/2 hrs a night! We must fix that first! He's not a very good doctor! Has no patience and doesn't allow me to speak cuz he says I have too many autoimmune disorders! I lost my leg to APS 4 years ago this month! He gave me trazidone to sleep! It didn't work last time, but he took me off cymbalta so now I'm back in cymbalta so maybe now it'll work! I have large white dots on back of my tongue! It's a bit more than tip that burns and in front of tongue the white dots get smaller! My tongue has cuts all over it and is extremely painful! I have dental appointment on Monday! I had an oral surgeon that gave me lidocaine, which is a numbing agent! I'm using that every 3 hours! It's still within the date to be used! I'm so upset with my doctor for telling me to be quiet! How have you been! I miss Mary and Lynn and all on APS SITE! Good luck and God Bless You! Thanks again for answering me

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Hang on did he look at your tongue? He’s right that lack of restorative sleep is very harmful to us but he still needs to check out and treat your tongue and not tell you to be quiet?! How rude is that??

I don’t know how you get Lidocaine for your pain if it’s in your mouth or face?

I have some patches left from a broken rib last year - but I saw a GP today and asked him if I could use them under my ribs for pain or on my face for Trigeminal pain as my neurologist suggested and he was shocked at this idea bit then laughed at the idea of me putting patches on my face.

I’m not sure I’d stick Lidocaine patches on my mouth - but I don’t think he’s much cop as a GP either as he should have some more suggestions. He just told me to get cardiovascular exercise as losing weight would help my fatty liver and pancreatic pain. So I’m trying! X

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Hi they're not patches lol... I can c me doing that tho! It's a thick liquid and My Primary Doc did nothing for my tongue, but saw my dentist and he gave me that Magic Swizzle that another person recommended on APS site! I'm at doc and he sees flare up behind my eyes with blood vessels and wants me to be treated with Sjogrens! I'm having Surgery in a few minutes for cyst removal! Thank God it's getting bigger and right in corner of my eye! So I'm gettstuff done for me! It's my turn and if I'm not ok then I can't care for my family! Doc said my immune system breaking down! I have RA so it's bothering me lots lately so I should go to Rheumatologist! Thx for all ur great information and help! It's awesome to have comrades GODSPEED

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