Would welcome additional suggestions! - The Australian Sj...

The Australian Sjögren's Syndrome Association

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Would welcome additional suggestions!

Bondgirl73 profile image
4 Replies

Hi everyone! I was diagnosed with Sjogren's late last year,although in my past,like many of you have had Lyme,chronic fatigue,rheumatoid since age of 8,fibro.The thing I must say I have a really difficult time in getting comfort for is my mouth and throat pain and swollen glands! I gargle salt water,drink water, suck ice cubes, lozengers (oral pro-biotics), use "Biotene" sometimes but don't like the chemicals they use.Was wondering if anyone else found relief using other things? I also often have ulcers on the tongue (it doesn't help that my tongue is a "geographial tongue pronce to cracks etc) I take vitamins and eat well...but this just makes me feel so miserable as I know you all know! Thank you for any suggestions! Hugs from Mon :-)

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marnie52 profile image
marnie52

I know just how you feel. As soon as I relax my tongue it touches my teeth and is so sore it keeps me awake trying to avoid contact. The only thing I have found that helps is teething gel. It stings when you apply it but eases it for long enough to get to sleep. Applying it before eating helps too. Good Luck Mon. Gentle hugs Marnie

Susie_Q profile image
Susie_Q

I have been taking Krill oil every day. I think this has made a difference for me with regard to the Sjogrens with the added bonus that it should help my joints as I have RA. Also if you are taking methotrexate that can give you mouth ulcers. I taken Folic Acid to stop this from happening to me.

CuriousCat profile image
CuriousCat

I had similar symptoms, but probably less severe. I have gone on a salicylate free diet, which is quite limiting but it has virtually got rid of my symptoms. I saw a dietician who got me on the right track (she works with an immunologist). I suggest you get a toothpaste with no mint flavouring (although they can be hard to find - Alfree is one brand) don't use mint mouthwash and only use the biotene products with pear base - not mint. That would be a good start but the diet will help most. And don't believe all the stuff on the internet about salicylates, if you want a good list of food see a dietician - or if you contact me I can send you a hard copy. Good Luck

Bondgirl73 profile image
Bondgirl73

Thank you so much everyone for your handy tips and advice! I know diet plays a huge role, as too does stress. I'm not taking meds, especially not methotrexate...just boosting my body with all the good stuff. I do notice (as some of you may agree) that things flare around times where I tend to bve sleep deprived or stressed out, which makes sense given it's the immune system. Hope you all have a happy and healthy week! Hugs from Mon :-)

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