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.

@clio

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.

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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

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@graveltruck

Does your skin itch. My arms and legs really itch. I apply lotion twice a day and take benedryl. Guess it helps. It puts me to sleep.

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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.

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@powerofpositive

Use glasses…the Jackie O type if your outside and it is breezy/windy…really helps cut down on the drying effects of the blowing air…also inside if near a air handeling unit. I have been using a honey based drop as the others also have scarey side affects longterm. So far so good. Helps to stay really hydrated. Drink lots of water and other fluids., down side is alot of bathroom visits, but I notice a big difference if I don’t. I am trying my best not to use DMARS and so far so good.
How severe is your Sjogrens? Some times it pays to slow down and not just react to a “diagnosis”. Now that you know what “it” is research on line, get a second opinion..investigate alternative remedies, the more we know the better choices we can make for ourselves. We are fortunate to have access to medications, but they often come at a price or create other health issues….as side effects. But make informed choices and good luck.

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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.

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@jmb73

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

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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.

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@lucillem72

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.

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

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@cmtg

Positive ANA, did not have the gland biopsy. Plaquenel prescribed have not taken yet. I have the dry mouth, dry eyes which are typical and lately nausea.

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I’ve had positive ANA test as well. I was diagnosed with burning mouth syndrome and central sensitization at Mayo a few years back. I’ve been having some other skin issues and went to local dermatologist. She suspects form of lupus based on symptoms and bloodwork and mentioned taking Plaquenel. She said it had been known to help with Burning Mouth Syndrome. Has anyone taken for their and if so was it helpful and were there any issues or side effects in taking? At this point, I’m fearful to take it and waiting to see a Rhuematologist to do further testing.

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Many years ago I had a positive ANA test and the rheumatologist said that showed I had lupus, but since I did not have the symptoms for that, I did not have it. He then said he did not know what I had. At Mayo I was diagnosed with burning mouth syndrome, but I was given no answer as to what to take for it. I finally found a doctor of pathology at our local dental university who said he had only one med that had helped some of his patients. I have been taking his recommended drug, Clonazepam (Klonopin).5 mg, twice a day. He told me to try 3 times a day, but did not think I would be able to handle that because I am small. In the beginning, it did make me sleepy and I take it twice a day. I am accustomed to it now and only take 3 if I am lying in bed at night and my mouth burns, which is rare. Then I know the next day to take three. It has helped me tremendously and my PCP handles my refills now. My PCP indicates on my prescription it is for burning mouth. You might try the Clonazepam because it really has helped me. I wish you well in your search because I know a burning mouth can make your life miserable. @joybringer1

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Hi
I was diagnosed at Mayo almost 7 years ago, they did a lip biopsy which was positive. Since then I have developed severe dry eye, optic nueritis and other issues

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