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Sjögren’s Syndrome: how do you manage the symptoms?
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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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This disease is so complex, many symptoms that come and go. Your friends , family and coworkers can’t begin to understand what you are living with. You should search for a Rheumatologist connected to a large research teaching institution. I’m very fortunate mine is st Johns Hopkins Hospital. He has been my doctor since my first symptoms of Raynaud’s. He has researched treatments for me as new symptoms have evolved. And as we all know, there are no cures , just treatments to help .
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3 ReactionsI take a pill name Evoxac for dry mouth . It definitely helps me. Last week at my routine dental check, my hygienist offered me a sample of a new mouth rinse for dry mouth sufferers. It’s called OraCare Health Rinse . I believe u can only purchase from dental offices . I helps me , hope you can find it available near you .
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1 ReactionAre you a veteran suffering from ptsd?? The Welcome Home Initiative by Rev Mumford might help you. By His Wounds ministry .org.
No I'm not a veteran
I have extremely dry mouth also along with eyes I’m working with an nutrition specialist and drinking most of my meals or having soft food mostly it is still sticking to throat and mouth. Is much harder as I age. Terrible peeling constant lips. Just not finding anything to help. Even last busy at mayo with new dermatologist has not helped, very frustrating! Each medication they give me seems to make it worse. Glad this procedure has helped you.
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3 ReactionsHi Doreen,
thank you. i rescheduled my rheum appt for monday morning. its early so im staying in a hotel the night before to be closer. my body aches i have no idea if its sjorgens related, fibro or something else entirely but it hurts like hell and im just hoping he does some kind of imaging. i been trying to get a mri since sept. its crazy i have had to suffer like this.
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2 ReactionsHi I’ve had shingles maybe 50 times in my life every spring and fall . I did get the vaccine and had some of your reaction so went straight to my tried and true shingles medication and stopped it. Valtrex. You really should ask your doctor for some . I of course keep it with me all the time and if I even get a cold sore I’ve been instructed to take it! Good luck!
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1 ReactionHas your doctor recommended Muro 128 eye cream? I sleep with my worse eye shut meaning i goop it shut at night with Muro 128 eye cream in order to not allow it to accumulate edema overnight. See if this helps‼️Gratefully, Marianne
If your pain is Sjögren’s related I doubt whether imaging will show up anything specific, unless you have lung or kidney involvement.
If it is something like eg. osteoarthritis or rheumatoid arthritis then yes, it could be helpful to have an MRI or other scan.
Thank you!