Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

I am not sure of your symptoms, so ask your dr. To test for sjogrens they take a biopsy of your salivary gland. The side affect is it will hurt for awhile when you eat, getting salt in it. My rheumatologist has made sjogrens my primary disease as it can rupture your organs. Although I have ms. I have many issues.

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@anniemaggie

I am not sure of your symptoms, so ask your dr. To test for sjogrens they take a biopsy of your salivary gland. The side affect is it will hurt for awhile when you eat, getting salt in it. My rheumatologist has made sjogrens my primary disease as it can rupture your organs. Although I have ms. I have many issues.

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That's why I asked for a salivary gland test (taken just underneath the ear) instead of a lip biopsy. I like my food to much 😉

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@ninette

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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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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@curlyq

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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Thank you for your reply, I hope you get your diagnosis soon. Well, apparently for Sjogren's there's no such thing as soon, but chat rooms like this one might one day change this. I get what you're saying about people's reactions. But then, they probably have their own cross to bear, so as long as we find some people who understand, we're fine. Have a nice weekend!

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My two cents on a few of the conversations:) As far as vaginal dryness goes my Gyn told me to use coconut oil and she also prescribed Intrarosa vaginal inserts nightly for dryness. For dental and mouth health found this on another Sjogren's support site and I really like it. I have used this protocol for about a week. https://issuu.com/zellies/docs/zellies-cmcsbooklet

Now that I have Sjogrens my teeth always feel like they are coated with yucky film. After using the protocol, my teeth and mouth feel cleaner….I will keep using it. Will be interesting to see what my dentist has to say. I also wrote my insurance and had my doc write a letter asking them to pay for additional cleanings due to this disease. They approved 3 cleanings a year instead of two…I pay for the additional one out of pocket so my teeth get cleaned every 3 months. Before getting diagnosed I too had a foul taste in my mouth and a foul odor. At the time I didn't realize my mouth was getting drier (bad breath) and I also had H. Pylori in my esophagus. I still sometimes have bad breath due to dry mouth but clearing up the H pylori and getting treatment for Sjogrens, and lifestyle changes have helped. Reference the lip biopsy conversation, mine hurt very little and healed quickly. Have had dental visits/crown/fillings/cleanings that hurt worse. Best Day to All:)

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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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@curlyq

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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@anniemaggie

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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So sorry to hear this.

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@aalbb

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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@aalbb Welcome. I don’t have sjogren’s disease but i sure know what it’s like to live with dryness. I live in Colorado so dry mouth and eyes can be real problems. Do you use a cool mist humidifier near your bed at night. Does your opthamologist have any recommendations for dry eyes?
It would be wonderful if you could share some of what you’ve learned with others in this discussion! What has been the most helpful tip for you?

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@curlyq

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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Ask your rheumatologist for a Rx Ed called Evoxac. It is for dry mouth. It really helps! I’ve had Sjogrens for about 15-20 yrs. I also have Erythromelagia and Peripheral Neuropathy. You can contact me directly to discuss further if u want .

REPLY
@curlyq

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

Ask your dr to prescribe Evoxac for your dry mouth. It really helps. I also have Sjogrens.

REPLY
@ninette

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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Hello @ninette, if you’ve not been to Sjogren’s Advocate – https://www.sjogrensadvocate.com/sicca, I recommend it. Also, Smart Patients – https://www.smartpatients.com/.

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