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Peggy

Sjogren's

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Does anyone else with Sjogren's wake up during the night with extreme thirst? Do you take something for it or just get up and drink something? The feeling is terrible as there doesn't seem to be one ounce of moisture in your mouth at all. I thought maybe there is something I could be taking that my rheumatologist just hasn't given me for it yet. I do have aritificial saliva that I can use during the day.

 

Thanks and warm hugs from Minnesota.

 

Peggy

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Peggy,

 

I'm taking Salagen and I still have a problem some nights with extreme thirst. I just keep a water bottle on my night table. Some mornings I wake up and the bottle is empty, yet I don't remember drinking all of it during the night.

 

Hope you get something to help soon!

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Hi Peggy,

 

Try drinking more water during the daytime, in case you are experiencing dehydration. Also use the artificial saliva right before bedtime and during the night, too.

 

I use a special mouthwash for dry mouth (not the regular kind, it is too drying!) right after using dry mouth toothpaste or prescription toothpaste. But lately I've been bailing out on an orange flavored kid's toothpaste that I really like. Which means it's probably bad for me, of course.

 

If your thirst is around the clock, more severe or unquenched than years past, see your doctor as it may be a sign of other things, like diabetes. Sjogren's really isn't a symptom of dehydration, it is a lack of moisture caused by an autoimmune attack on the moisture glands. So dry mouth would be a symptom but unquenchable thirst, probably not, as that's a different thing.

 

Did I make ANY sense with that attempt at explanation?


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Good point made by Shelley about thirst. I have Sjogren's and frequently wake up with a parched mouth, but not thirsty - so thirst could be something else. Dehydration (as well as many drugs) can cause a dry-mouth situation. If you haven't been tested, you should make sure that you have the Sjogren's autoanitbodies to ensure the diagnosis.

 

My favorite thing to do if I wake up parched is to swish some special dry-mouth mouthwash (Biotene) around my mouth, then rinse with water and go back to bed. It leaves my mouth feeling much better than water alone.

 

Craig

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Hi,

 

I have a similar problem - and while I'still waiting for a diagnose - I have definitely Sicca/Sjoergen in the mouth (and I think even nose to some extend).

 

So I have massive problems with breathing at night (I used to breath by the mouth all my life => 38 by now)...but I had to change this due to having such a dry mouth, that I woke up in pain.

 

So now I try to breath through the nose and use some nose spray (see-salt spray) and Bepanthen for the nose. And I use a stick of chewiing gum, that I stuff between my upper teeth and my cheek..the mint in the chewing gum definitely helps to produce more saliva and I get to sleep easily - if I wake up, the chewing gum is still there, I can reactivate it with my tongue and it still does it's job somehow...the trick is just to now chew it too much before going to sleep so that some of the mint taste is still there at night or in the morning.

 

I don't know, if this would work even with more severe Sjoergens...but it does for my (stil mild) form.

 

K.

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K,

 

Mouth breathing at night can be a big problems with Sjogren's. I find that it is always worse when I sleep on my back (face up). My mouth is always better when sleeping on my side.

 

The gum issue would worry me - I'd be afraid of choking if I fell asleep with gum in my mouth.

 

Have you seen an ENT (Otolarnygologist)? You might be able to get some help with your nose breathing. Mouth breathing is a definite hindrance with Sjogren's.

 

Craig

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Hi,

 

no I have not seen anyone (other than the rheumatologists and the general physician - but none of them seemed to care much about this really).

 

Anyway: it's worst in hotels (AC obviously) - at home I can even survive without gum....but as I never sleep on my back anyway, I have no worries about chocking....plus: honestly I always find the gum, where I stuff it before I go to sleep. (I stuff it somewhere on the side behind my upper teeth and cheek...this works perfect...you wake up, feel dry, try to locate the gum, lick a few times...and some more salive soothes you back to sleep...

 

So: not worried at all...but you are right, if this becomes worse, than it's probably better to have this "fixed" before....but hey, doctors tried that 30 years ago and didn't succeed...and now I got so used to it, that I really have trouble "psychologically" to allow myself breathing through the mouth (especially as my nose always let's less air through and I'm used to "lots" of it...).

So I fell like chocking breathing through the nose most times...

 

Will become interesting, if the lung becomes affected in addition.

 

K.

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