Sjogren’s Syndrome – Introduce yourself and meet others

Hello! I am in the process of getting an official diagnosis as well. I am a 58 year old woman who has had extreme vaginal dryness, dry eyes, dry skin and joint pain for almost 30 years. My vagina even with treatment is so dry it bleeds, my eye test is positive. I also have an appointment for a lip biopsy and to see a rheumatologist. I have fibromyalgia, underactive thyroid, hearing loss, trigeminal neuralgia, and peripheral neuropathy. For the dry mouth, my dentist has recommended brushing and flossing 3 times a day. Also, Xylimelts, Gengigel, Opti-rinse, and x-pur remin toothpaste available at any Shopper's Drug Mart or on Amazon. I would also get a good dental check-up. Sorry for all the advice, was a RN for 37 years. My problem is telling people. I find people either go overboard with sympathy or completely minimize it. So I have decided to only talk about it with certain people and get some professional help. Thank you for listening to me.

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Sjogrens has done a number on my teeth, it has taken almost all of them. You have no control over sjogrens. I have learned to eat without them, this has happened much later in my life. Such is life!

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I was diagnosed with Sjogren's about 15 years ago by my Ophthalmologist. MY PCP at the time disagreed saying the dryness in my eyes and mouth were from "stray radiation" when I was treated for oral cancer. About 7 years ago I was finally referred to a Rheumatologist and three years ago I was diagnosed with Lupus and RA as well. I continue to battle the periodic foul taste and the frequent waking up at night due to dry eyes and mouth. My dentist has really gone to bat for me and has me try every new product for dryness that comes out. Some work. some don't and some work for a while and then don't work anymore. I look forward to learning from you on this platform and hope I can share some of what I've learned as well.
Stay safe!

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Hello! I am in the process of getting an official diagnosis as well. I am a 58 year old woman who has had extreme vaginal dryness, dry eyes, dry skin and joint pain for almost 30 years. My vagina even with treatment is so dry it bleeds, my eye test is positive. I also have an appointment for a lip biopsy and to see a rheumatologist. I have fibromyalgia, underactive thyroid, hearing loss, trigeminal neuralgia, and peripheral neuropathy. For the dry mouth, my dentist has recommended brushing and flossing 3 times a day. Also, Xylimelts, Gengigel, Opti-rinse, and x-pur remin toothpaste available at any Shopper's Drug Mart or on Amazon. I would also get a good dental check-up. Sorry for all the advice, was a RN for 37 years. My problem is telling people. I find people either go overboard with sympathy or completely minimize it. So I have decided to only talk about it with certain people and get some professional help. Thank you for listening to me.

Jump to this post

Hello! I am in the process of getting an official diagnosis as well. I am a 58 year old woman who has had extreme vaginal dryness, dry eyes, dry skin and joint pain for almost 30 years. My vagina even with treatment is so dry it bleeds, my eye test is positive. I also have an appointment for a lip biopsy and to see a rheumatologist. I have fibromyalgia, underactive thyroid, hearing loss, trigeminal neuralgia, and peripheral neuropathy. For the dry mouth, my dentist has recommended brushing and flossing 3 times a day. Also, Xylimelts, Gengigel, Opti-rinse, and x-pur remin toothpaste available at any Shopper's Drug Mart or on Amazon. I would also get a good dental check-up. Sorry for all the advice, was a RN for 37 years. My problem is telling people. I find people either go overboard with sympathy or completely minimize it. So I have decided to only talk about it with certain people and get some professional help. Thank you for listening to me.

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I'm in the process of getting the official diagnosis of Sjogrens- it's not in my blood, but I don't produce any tears, have very dry eyes, nose, mouth, skin, everything, my salivary gland CT came back as 'bad' and I will have a biopsy of the gland next month. I also have neurological, muscle and joint issues. One thing that bothers me lately is a foul taste in my mouth and ditto smell in my nose, very sweet and sickly. It comes closest to the smell of fresh (not infected) urine. No headache or sinus pressure, so maybe the dry sinuses are to blame? It drives me nuts. I put some mint cream under my nose to try and mask the smell, I drink a lot of water each day, but what else can I do? Does anybody recognise this? Thank you all for your feedback!

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I'm in the process of getting the official diagnosis of Sjogrens- it's not in my blood, but I don't produce any tears, have very dry eyes, nose, mouth, skin, everything, my salivary gland CT came back as 'bad' and I will have a biopsy of the gland next month. I also have neurological, muscle and joint issues. One thing that bothers me lately is a foul taste in my mouth and ditto smell in my nose, very sweet and sickly. It comes closest to the smell of fresh (not infected) urine. No headache or sinus pressure, so maybe the dry sinuses are to blame? It drives me nuts. I put some mint cream under my nose to try and mask the smell, I drink a lot of water each day, but what else can I do? Does anybody recognise this? Thank you all for your feedback!

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