Sjögren’s Syndrome: how do you manage the symptoms?

Posted by eileenb1022 @eileenb1022, Feb 23, 2023

Hi
I see a rheumatologist next week for sjorgens syndrome. Last summer a sinus doctor I saw mentioned it to me and recommended I see a rheumatologist. I never had heard of sjorgens and I have never been to a rheumatologist. At the time last summer. My only symptom was very dried out mouth. I developed dry eyes only a few months ago. The otc drops for dry eye stopped working unless my eyes were just getting worse so my eye Dr recommended something stronger otc. It's better. He did prescribe me restasis but unfortunately even with my insurance it was too expensive so I could not get it. But my other concern is the body/joint pain I ha e been having. It's gotten so bad tonight is the first time I have been up all night. I do have a unrelated degenerative changes near my lumberspine which is causing other embarrassing issues but my other pain started actually even way before the dry mouth. It started very soon after my gallbladder surgery last January. It started in my upper back spasms and just painful. Worse now then last 6 months went to my shoulders that's very tender, my neck. Arms. I read a article about sjorgens pain being similar to fibromyalga pain. I wondering if anyone thought it was sjorgens related being this painful or maybe something else? I have wanted imaging, preferably a mri bur been unable to get it. I'm hoping next week the rheumatologist will order something. Also last summer my sinus doctor did order bloodwork some sjorgens antibody bloodwork 5 of them and they were all normal. Although now with my symptoms progressing I wonder what bloodwork now would show. Any feedback would be greatly appreciated. Thank you.

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i have heard about the lip biopsy. my bloodwork i had relating for sjorgens was last summer so who knows now. also at that time i didnt have dry eyes which i do now. rather badly. my apt is tuesday. unfortuentley we are expecting alot of snow so since he is aways away from me i might have to reschedule. i dont want to at all but may not have a choice. i been trying to see a rheum since last summer. but i know from their message for my appt if i had to reschedule it may take a month for a new appt. not really what i wanted, i been waiting so long. my pain body pain is so incredibly painfu upper back, shoulders neck arms i thought maybe was fibro but someone sent me a article how sjorgens pain mimics fibro but i dont know i have to lay down most of the time pain is that severe. dont really know what it is. i was hoping to ask for a mri. i been trying for one since last sept. noone would help me but i been working had on finding better doctors so im hopeful. also pain in the ribs. no idea if thats from possible fibro or connected to my autoimmune gastritis. id rather it be fibro pain. thanks for writing!

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@eileenb1022 I had a lip biopsy and blood test they both came out and exit negative for sjogren's. That's not uncommon. I had 2/3 of the symptoms especially dry mouth white tongue very very fatigued. My rheumatologist confirmed I had sjogren's. My ENT's three of them said no I don't because they were negative biopsy and blood work. Be diligent and ask a lot of questions but the most important ones ask first. Don't let her blow you off

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