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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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@eileenb1022 I’m really glad you will be able to see a rheumatologist and get your questions answered. I included Mayo Clinic’s information on Sjogrens . It should help you develop some good questions. You want to focus on what is going on with you right now: dry eyes and mouth and body pain. Have a notebook with your questions and write all the answers. Even now, 6 years after I was diagnosed with an autoimmune disease, I still write down everything the doctors say.
https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
Do you have a spouse or friend who can with you as an extra set of ears?
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1 ReactionI have MS, and the one of the reasons MS is hard to regulate heat is because it also affects sweat glands and just about every other organ . I have swallowing issues and dry mouth as a result of my autoimmune. I didn't get the wedge pillow for my gerd right away, and couldn't feel my throat as I didn't realize that I was damaging it worse.
The autoimmune issue is causing the issues with the hormones transmitters and glands, as well as the resulting fallout trying to eat and getting issues in sinus, nose throat salivary glands etc.
Just saying that these could be after effects of something else, try to get to the cause. The MS treatment helps, but then i have to go symptom by symptom.
The good news is that as far as i can tell, there's a lot more medication approved for MS. treatments are organized and people understand and hrlp with the myriad of isdues that you seem to be facing. Doctors faced with these opportunities to diagnose, autoimmune, if they call it MS, will there be better outcome for the patient that all of the other crap.
Hopefully they can run the mri and look for lesions in spinal? Or you find whatever else is bothering you. Stress can be ms trigger, and surgery is stressful. Or could have been a mystery virus that MS is supposedly triggered by. Diabetes also can cause the similar swallowing and glad issuesand neuropathy because it's also autoimmune. Only get a diagnosis with treatments please 🤣
Good luck...
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1 ReactionHi Becky,
thank you for the info. any more info will definetley help. yes i have my husband he always goes to my appointments with me. im hoping we dont get snow on that day i dont want to miss this appt. i been waiting so long. thank you.
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1 Reactionthank you so much for your reply. im sorry you are dealing with ms. its not easy i know. i been through so many doctors im starting to line up good ones after almost 2 years of various issues. i have alot of autoimmune. just found out my thyroid condition i have had for 20 years is hashimotos. i also am going on my 5th yes 5th GI. i dont believe i have ms. im mostley dealing with possible autoimmune gastritis which scares me. plus the sjorgens and silent reflux i have 3 specialist appts in next 2 weeks. i did have a ctscan last july thats how i found about as far as my lower back it said degenerative changes near my lumberspine but this was in the ER. my other pain, i dont know if its sjorgens or something else. but im been at this almost 2 years. looking and i wil get treatment. i appreciate your post so much thank you!
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3 ReactionsYes, familiar with the autoimmune symptoms myself, good luck, not easy, hopefully they have something for you
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1 Reactionthank you. its been a work in progress but im getting there. best wishes
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1 ReactionThis is my take on any autoimmune issue:
- When you are having a flare up your lab numbers will be high and reflect that something is wrong and your symptoms will be full blown.
- when your flare up is over, even a week later, your numbers will go down as your symptoms go away.
I know because it happened to me in 2016. Neuro took labs and my lupus numbers were high. Sent me to rheumatologist. Outbreak was over, labs went down, she walked out on me saying "no lupus". Now 7 years later I'll be starting my second round of steroids because of issues possibly lupus related. New rheumatologist who deals with "complicated" cases took labs but I have to wait several more weeks before going over them! He's so in demand. So I will continue to suffer while waiting for an answer. But I like him a lot.
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2 ReactionsSjogren’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!
P.S. if your eyes are that dry, your ophthalmologist may want to consider plugs in your tear ducts.
@susanh824 what tests were done to diagnose fibromyalgia?