The Australian Sjögren's Syndrome Association
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Parathesia ‼️

Why, oh why, does my Paresthesia come back so severely each day in late afternoon to evening ❓I take my Plaquenil in the morning. Wonder if I should take it at 3 when I take my Gabapentin ❓ Thoughts...

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It sounds you have damaged peripheral nerves are you under a Neurologist? If not I would get a referral from your GP

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I was tested for PN all were negative...Being tested for Small Fiber soon.Thanks👍🏻

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Sounds more like SFN to me. I have it everywhere but now most actively in my lips and gums and it’s much worse in the evenings. Can’t tolerate Gabapentin or any of these drugs including Hydroxichloraquine.

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So I don't know what you mean by SFN but will reply about the lip and gum implications.

I find that my burning & peeling lips and mouth sores are related to what I eat and maybe stress. For me, my lips are much better if I avoid acidic food for the most part. This also includes cola and tea. So if I eat whole foods like fruits, vegetables, potatoes, rice and protein avoiding citrus, tomatoes, peppers, other high acid foods, prepared foods and sauces, etc. of which I don't know the contents, my lips generally heal up. I am also gluten free. You may find you react to different foods. I suggest doing an elimination diet test.

Since I need to eat a taco once and awhile and can't or politely don't want to be so finicky dining with friends & family, I've found one thing that definitely counteracts flare-ups: homeopathic Natrum phos (sodium phosphate) or a compound from Luyties called "Acidity" which contains Natrum phos as well as Natrum sulph (sodium sulphate). I can actually feel my lips improving within a half hour. You can get similar products from other companies. Good Luck with your teeth & general health!

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SFN = Small Fibre Neuropathy - a very established aspect of Sjögren’s - particularly for people who are seronegative/ lip biopsy positive. I don’t think what I eat or drink makes any difference to mine. I also have body wide SFN, atypical Trigeminal Neuralgia and and TMJ. I get burning every afternoon and evening daily regardless of what I eat - although I avoid spicy and acid foods now.

I’ve tried all the food elimination diets - most people with burning mouth syndrome have done this because it’s such a nightmare of a condition and people with it will do anything to try and cure theirs.! I’ve lost my sense of taste and smell years ago. But my feet and finger pads are numb too now after years of burning.

If yours is worse after certain foods then it might be oral thrush?

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That's rough. Sounds a bit like my friend who has scleroderma. Don't have thrush, do have eczema and probably celiac disease. But there are so many related conditions and symptoms involving body systems that there seem to be an infinite number of manifestation combinations. One thing this website has taught me is that my symptoms are relatively mild and that I'm very lucky in this. Keep on hanging on.

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Thanks. Interesting about your friend - my ANA is pattern of Scleroderma and I do have some features and a new antibody for this is now equivocal first time.

I do think my Sjögren’s is pretty debilitating - but mainly due to the fatigue and neuro symptoms rather than the classic symptoms which I have but ignore.

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Wow, so how are you coping 🙁❓

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I'd advise talking to your doctor about trying a natural anti-inflammatory like Curcumin or dark cherry extracts to combat inflammation. There are generally no side effects or contraindications with them. Also, why not try changing when you take a medication?

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