Dryness / dehydration - sicca (eyes, mouth, throat, skin, stomach)


Bathroom 5-7x per night, 10x per day (sensitive bladder), and drink 5 sips every time at night to reduce dry mouth, dry cough, cramps, & headache, the rest in the mornings, a bit in the afternoons, only sips in the evenings. I’ve tried increasing to maximum, and it just makes the bladder worse, so docs says go down again. It’s been for years, making holidays hell (where’s the nearest toilet!?!) but making my sleep worse since fibro.

Probably part of a sicca-syndrome I seem to have: eyes, mouth, throat, skin, hyperacidic stomach, lips & hands in the winter, praps preform of Sjögren’s (lip biopsy stage 2 of 4).


Main help: Only soy drink improves very much. I did a check 24h water vs. 24h soy drink. I c’dn’t drink much water, but wee’d much more than I drank, with soy drink the other way round. Found an unsugared soy drink (teeth have suddenly got much worse from the dry mouth!) which tastes good, milky; not easy. Lemon, orange and vinegar w’d increase my hyperacidity. My alternative health practitioner had suggested not drinking “water”, since my skin seems allergic to water (only 2’ showers with little soap). Strangely it works altho of course soy drink contains about 90% of water too, but somehow emulsified. Thinner soy drink doesn’t work as well, I think.

Slight help: GC dry mouth gel (dentist-suggestion) helps only a little. It’s next to my bed, I use it at night when I don’t want to get up again.

Aggravation: 2mg-25mg of Amitriptyline 4 months made it very much worse, one of 8 reasons to stop it.

My own checks: Not sleeping with mouth open, no apnea, no snoring. (Read up mouth-taping against open mouth on the healthline site.) Tried getting the humidity in my bedroom up for my clotting nose & mouth, the only thing which worked is heating on and wet towels, bowls of water or similar don’t, but doesn’t help either. I even bought a high-quality hygrometer to hold the fine line between mould-creating and too dry - 60% max.: which showed that it is almost always around 60% anyway.

Doc checks: My bladder & kidney are OK, both extensively checked, no diabetes, no problem with sugar processing (hardly allowed sugar anyway due to very high blood fats making a Mediterranean diet, say all my docs), no doc explanations, not for thirst & dry mouth, nor sensitive bladder, nor for the soy drink.

Possible root cause: Sicca-syndrome helps to see the connections between my symptoms. The sensitive bladder as well as my pain before peeing c’d be a muscular issue. Training the bladder hasn’t been possible; pain before peeing is improved by stretching backwards, doing yoga; not there at all when emptying the bowels.) As so often, I don’t care if it’s down to fibro or Sjögren’s or whatever, it’s one of the many symptoms (all?) that calls for its own remedy (at least as long as the central mechanism of sicca can not be improved without other side effects). Like the dry eyes (warming, then Gua Sha), skin (little water, little soap), stomach (elimination diet).

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Hi, JCS!
How terrible that you’re dealing with all of this! Your skin is allergic to water? Yikes! Probably good you are taking showers instead of baths then. Hang in there, my friend. You will find the answers you need. If anyone can do it, it is YOU! :purple_heart:

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Oh boy. I am so sorry to hear you are dealing with so much. I have Sjogren’s as well as Fibro so I get how the symptoms overlap some but others stand out.
It can be very tiring dealing with it all.
I hope you give yourself lots of downtime and self care. And vent lots! You are definitely with people who get it


It’s a lot to deal with ! I have an allergy to the sun so I can imagine being allergic to water is a stressful everyday living thing to deal with too. I hope you are able to find relief ! Hang in there and a work up for sjogrens syndrome isn’t definitely a great idea. I was in ophthalmology for years and many patients who had difficulty using artificial tears or gels would get punctal plugs . They keep the tears from draining out of the eye too quickly…Something you may look into or ask your eye doctor about to help with the dry eyes. This may be beneficial since you have the water allergy. Good luck !


Oops * that’s IS. Definitely a great idea for the sjogrens work up . :blush:

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