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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@eileenb1022

You sound like a great grandma! I hope she goes back to your primary maybe he could help her. I remember my son being that young. My son is now 26. He has autism be just the greatest kid. I have hated being this sick cause I just want to be well for him.

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I understand totally....totally. Sending you a warm encompassing hug to help you relax, even for a minute. Relax and recharge. ❤️❤️

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@eileenb1022

Oh I understand. I hope you can get another appointment soon. You sound like me though always putting others first. My husband also has health issues, diebetes and heart issues. My doctors, all of them are about 3 hours away. It's a sacrifice.

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Yes. And not always appreciated. But I still do it.

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@jerrysgirl3

I understand totally....totally. Sending you a warm encompassing hug to help you relax, even for a minute. Relax and recharge. ❤️❤️

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thank you. you too blessing for you, your daughter and that precious 4 yr old! 😉

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@jerrysgirl3

Yes. And not always appreciated. But I still do it.

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i hear ya. believe me...

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@susanh824

I can’t afford Restasis either, and also use Systane.

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I get punctal plugs out in every six months or so. They do have permanent ones or they can cauterize the lower tear duct. It has helped my dry eyes and vision a lot.

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@eileenb1022

thank you. you too blessing for you, your daughter and that precious 4 yr old! 😉

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Thank you !

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I recently received my Sjögren’s Syndrome diagnosis. I’m nervous, scared & really don’t know what to do/expect. Any/All suggestions on how you’re dealing with this will be greatly appreciated.

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@mzbea71

I recently received my Sjögren’s Syndrome diagnosis. I’m nervous, scared & really don’t know what to do/expect. Any/All suggestions on how you’re dealing with this will be greatly appreciated.

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@mzbea71 Welcome to Mayo Clinic Connect. This link will take you to Mayo’s discussion of Sjögren’s syndrome.
https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
Let’s ask these other members who are dealing with Sjögren’s syndrome if they will join this discussion. Ask: @susanh824 and @rarelybees2889 and @ elmay and @jenrados75 . I’m sure they can answer your question . Other members may also join the discussion.
What symptoms do you have that led you to a doctor?

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@mzbea71

I recently received my Sjögren’s Syndrome diagnosis. I’m nervous, scared & really don’t know what to do/expect. Any/All suggestions on how you’re dealing with this will be greatly appreciated.

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Hi @mzbea71, I'd like to add my welcome. I moved your message to this existing discussion so you can connect with other members easily.
- Sjögren’s Syndrome: how do you manage the symptoms? https://connect.mayoclinic.org/discussion/sjorgens-syndrome/

You may also be interested in these related discussions:
- How do you deal with dry eyes? https://connect.mayoclinic.org/discussion/dry-eyes-1
- Sjogren’s Syndrome – Introduce yourself and meet others https://connect.mayoclinic.org/discussion/sjogrens

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It’s actually spelled Sjogren’s. You may be able to get more information by googling that.

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