Sjogren’s Syndrome – Introduce yourself and meet others

@lucillem72 - Dry vagina is due to menopause. I had breast cancer at 48 - back then it was only double negative, triple wasn’t in the vocabulary. During chemo I went straight into menopause. My oncologist advised me not to use estrogen creams. There are other products that help.

I am very similar to yours only I was 56. But that was my 1st bout wit cancer. That one was only estrogen receptive. This one was much more intense for treatment.Thank you for your reply.

Hello @sarcomasurvivor,

It has been a while since you last posted and I was thinking about you. How are you feeling these days?
I would like to hear from you when it is convenient. Will you post an update?

Am new to this stream but not new to Sjogren's. To even hear that someone else in this world has Sjogren's is very connecting. Am experiencing digestive problems now. No GMO seems a logical conclusion too. No nice omelets anymore either. Am interested in ll answers. Forewarned of anything is a relief.

@clio welcome to MayoClinicConnect where everyone helps everyone! We’re not doctors but we all have experiences with illness, treatments, doctors, hospitals, you name it. Let me see if some members would come back and help with your questions. Can you give @clio some advice. @cmtg. @powerofpositive @johnburns. @blindeyepug @kyjeanne ?

Hi Clio, I have had Sjogrens most of my life. I was called "squinty" as a teenager because I blinked so much. Do you have a rheumatologist that really knows Sjogren's? I have found eating small meals- especially at night helps. For the pain, I use medical marijuana CBD. It helps with the inflamation. I can't take the usual medications for Sjogrens as my rheumy had me tested and I have a very low immune system. You probably know that your immune system attacks itself so you have to be very careful- especially with Covid around. If you get a flare, the best thing is to give in to it and just rest. If you fight it, then it lasts longer. Besides digestive issues, are there any other issues you have developed. Good luck and keep in touch. Joan

I was dx'd with an autoimmune disease after my 3rd child was born. The weird thing was I had painful joints when I was pregnant with my first child. I was going to my Chiropractor and he felt I might have had Chronic Fatigue. Went to a Rhuematologist and was diagnosed with Sjorgrens. There after I have had 2 bouts of Cancer. My worst symptoms are dry eye and itchy skin. I have tried plugs buy they didn't stay in. I use 2 meds for my eyes. Restasis & Paseo. I use any of the top non fragrant lotions for my skin. The brain fog is even worse since chemo. And the joint pain due to the Arimidex.

I have sjogrens as part of MCTD - dry eyes, dry mouth and skin are present. Occasional salivary duct stone, which lemon drops help clear. I do not take meds particularly for this, but I do use Systane liquid tears, PM ointment and pataday. I do "scrub" my eyelids to activate tear ducts. There are meds for this, but so far the common sense treatments work. My ophthalmologist manages eyes; and regular dentist for the dry mouth: I brush 2X daily, use waterpik also, and swish mouth with water through the day. Biotene spray helps as do xylimelts.

The "autonomic" system goes along with this. I have sjogrens overlap with Mixed Connective Tissue Disease. Brain is important as far as resilience to adapt to symptoms and to care for yourself. It is not a matter of mind over body, and not making symptoms up. Autoimmune disease, for me, means that I do not necessarily catch things more easily, but rather that I get really sick when I do. I was on Methatrexate for years; still taking Plaquenil and Etodolac, a buffered NSAID. Non-processed diet, hydration and movement matter.

Creams are better as they do not have the drying alcohol. I like Eucerin Skin Calming cream, and others swear by CERAV/