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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You can have a negative ANA and still have Sjogren’s. Ask your rheumatologist for a lip biopsy. Just on symptoms alone, I would say you have Sjogren’s. Possibly fibromyalgia as well. Look up fibromyalgia trigger spots and try pressing down on them hard to see if you feel any pain. Best wishes!

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@megangreen

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.

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well my back is in such excruiting pain i can barely sit up so i think some kind of imaging would be worth it

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@susanh824

You can have a negative ANA and still have Sjogren’s. Ask your rheumatologist for a lip biopsy. Just on symptoms alone, I would say you have Sjogren’s. Possibly fibromyalgia as well. Look up fibromyalgia trigger spots and try pressing down on them hard to see if you feel any pain. Best wishes!

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thank you. i agree as far as the sjorgens goes. i have heard of a lip biopsy. thank you. i thought fibro as well now im wondering i would like imaging just to be sure i know i have degenerative changes near my lumberspine cause i had a ct scan last july and that is extremely painful the rest no idea.

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@susanh824

Sjogren’s Syndrome is generally diagnosed through a lip biopsy. It’s good that you’re going to see a rheumatologist. I have both Sjogren’s Syndrome and fibromyalgia, as well as Exocrine Pancreatic Insufficiency. It’s hard sometimes to tell which disorder is causing which pain!

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What test for fibromyalgia?

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Your doctor needs to do a tender point test. A rheumatologist did mine. Certain parts of the body are especially tender in patients with fibromyalgia.

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What stuck out to me in your post was the Gallbladder Surgery. I was diagnosed after mine as well. I also had severe back pain. Did you have a laparoscopic surgery or did they open you up? i would be curious if they left clips in you If you had laparoscopic.

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@sal99

What stuck out to me in your post was the Gallbladder Surgery. I was diagnosed after mine as well. I also had severe back pain. Did you have a laparoscopic surgery or did they open you up? i would be curious if they left clips in you If you had laparoscopic.

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Hi,
Mine was lapascopic. I am pretty sure I still have metal clips in me. I started with upper back pain a few weeks after my post up surgery appointment. I did reach out to my surgeon since it started so soon after the surgery. He words were that it wasn't related to the surgery and I should contact my pcp for a work up. That eas Mt last contact with her.

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@susanh824

Your doctor needs to do a tender point test. A rheumatologist did mine. Certain parts of the body are especially tender in patients with fibromyalgia.

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I did see a rheumatologist the other day. absolutely awful. He already decided I felt that I didn't have sjorgens. He even corrected me on how I pronounced it. He also said I didn't look like someone with a autoimmune disease. Hello I have hasimotos. As far as the lip biopsy He just told me to have my dentist refer me to a oral surgeon to do it. He did mention fibromyalga for about a se one. I kept saying I needed a mri. He said I needed to start with a xray but he would only order a xray of my back nothing else. I mentioned how sore my neck and shoulders were, he just said well you can move your neck just fine. He was also dressed like a lawyer not a doctor. Needless to say I just went home and called someone else that someone recommended. My appointment is next month. I was lucky to get in on a cancelation
But I continue to be in pain. As far as the degenerative changes near my lumberspine. he could have cared less.

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@eileenb1022

Hi,
Mine was lapascopic. I am pretty sure I still have metal clips in me. I started with upper back pain a few weeks after my post up surgery appointment. I did reach out to my surgeon since it started so soon after the surgery. He words were that it wasn't related to the surgery and I should contact my pcp for a work up. That eas Mt last contact with her.

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I had read about a metal allergy yo these clips. I inquited about having them removed but that would require another surgery. Not sure If I want to do that and if insurance would pay for it.

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@sal99

I had read about a metal allergy yo these clips. I inquited about having them removed but that would require another surgery. Not sure If I want to do that and if insurance would pay for it.

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I really don't know. No idea if that is the cause. I have heard alot of people have issues following gallbladder surgery. I seem to be one of them unfortunately.

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