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Real members of MyChronicPainTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Does Anyone Have Sjogrens? Seems Like No One Understands.

A MyChronicPainTeam Member asked a question 💭
South Milwaukee, WI

My dry mouth has affected my teeth. I've had a lot pulled and will be getting a partial. I carry a bottle of water where ever I go or my mouth is so dry that my tongue sticks to the roof of my mouth! There's no fluid in my eyes and my vision has been affected, not by the Plaquinol. They're very sensitive to light and hurt. RA and spinal stenosis and diabetes go along with this. Just so frustrated and depressed. There is a young goofy person inside this body!

June 12, 2017
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Answer Summary

Members connected over the challenges of living with Sjogrens syndrome, sharing experiences of severe dry mouth that causes tongues to stick... Read more

Members connected over the challenges of living with Sjogrens syndrome, sharing experiences of severe dry mouth that causes tongues to stick to the roof of the mouth, speech difficulties, and even being mistaken for intoxication, as well as dental problems ranging from cracked teeth to full dentures. Several members found relief through practical strategies including Restasis eye drops, punctal plugs for tear ducts, xylitol gum, mouth sprays, keeping water accessible at all times (including bedside with a lidded straw cup to prevent spills), and newer prescription eye drops that showed visible improvement within a month. A recurring theme was the compounding effect of multiple autoimmune conditions and medications like Metformin that worsen dryness, yet members emphasized the importance of not comparing struggles and validating that any level of pain or difficulty deserves recognition and support.

A MyChronicPainTeam Member

You have to watch gum and/or candy with xylitol in it because it tends to give some people diarrehea

June 19, 2017
A MyChronicPainTeam Member

Hi JulieR,
Complain away lovely lady. When I was training to be a nurse, I had to learn several quotes to put into my essays, one of which I have never forgotten is " Pain is what the patient says it is, when the patient says it is". I have Children with Special needs, and cofacilitate a parenting group for parents with Special needs children, and some of them will say well my child isn't as bad as that. I always say to them, if it is a problem for you, then it is a problem, no matter how big all small. My health is deteriorating fast, I have fibromyalgia, but I tell myself, if your in this much pain then your very much alive lol.
Sending hugs
Helen

June 16, 2017
A MyChronicPainTeam Member

I have Sjogrens and my mouth is qvery dry. I also have RA, Lupus SLE and many other autoimmune diseases. I have been diagnosed with Type 2 diabetes. I am on Metformin. The Metformin has really increased the dryness in my mouth. A lot of my medications dry out my mouth along with the Sjogrens. I always have water with me as I have to constantly sip on a drink to keep my tongue from becoming glue to the top of my mouth. I wish it would let up by my doctor told me unfortunately there is nothing other than liquids with me to sip on and gum and/or mouth spray is the only answer for this due to medications that compound the problem.

June 20, 2017
A MyChronicPainTeam Member

@A MyChronicPainTeam Member, I have sjogrens and reynauds syndrome 2nd from my ra and other illness', my doctor told me to drink water with meals, I have dentures due to sjogrens, they do have a mouth spray u can carry wiith u and I use an eye drop, visine works as good for me as script strength..

June 20, 2017
A MyChronicPainTeam Member

I also look for gum with xylitol in it. This also helps with dry mouth.

June 17, 2017

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