I was diagnosed with Sjogrens about 3 years ago after waiting to see rheumy when my blood test already showed things were awry 3 years prior.
Not having much for symptoms; occasional soreness in salivary glands, occasional dry eyes - I wear prescription glasses all the time, occasional dry mouth - still gum-chewing 11+ years after quitting smoking, that seems to resolve the dry-mouth issues for me thus far.
The MAJOR issue for me for about the last 11+ years has been debilitating fatigue. AND, do I have news!
I have been supplementing with various herbs and vites - helps somewhat but still needed to nap most days.
Recently, I came upon some info re: beetroot powder and l-carnitine amino acid. I currently take 2 capsules of beetroot powder per day (each ~ 500 mg - I fill my own caps) and 1 capsule l-carnitine amino acid (500 mg). Both of these work with the mitochondria in cells bringing energy directly into the cells.
Wow! The first day, I felt a difference. I can go 4 to 5 days at a time without napping during the day. There are precautions - if you are pregnant. Check out the literature. Has been a blessing in disguise for me tho'.
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SamTheTurtle
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Hello SamTheTurtle, i wear glasses like yourself and have to use 3 different drops a day alternating them. Salagen is a good medication also for dry eyes and mouth which i take 3 times daily..there's also Biotene which is quite expensive but good for adding moisture to your mouth.
I'd just like to add, although you've found herbs to suite you, they can also make A1 Diseases worsen but it's everyone to their own. ☺️
I haven’t tried the beetroot powder but have had incredible fatigue improvement with Acetyl-L-carnitine....although it is quite expensive for a good quality product.
Even now, ten years on in my journey with SjS, if I have bad energy or fatigue (which is very rare these days) my better half will say, take some Acetyl L-carnitine however I don’t usually have it lying around the house as I need it so rarely and it has a fairly short expiration time. I took a high potency powder and used to put it in V8 juice as it had a savoury and sharp ‘vinegary’ taste. The V8 was on the same taste spectrum as the Acetyl-L-carnitine.
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Sjogrens and pancreas pain
