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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

..Inquiring Mind.. So just wondering "Do your symptoms change rapidly that you question what type of Lupus you actually have??

A MyLupusTeam Member asked a question 💭
Arlington, TX
May 20, 2023
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Answer Summary

Members shared their experiences with rapidly changing lupus symptoms, with many describing how unpredictable shifts between joint pain, skin... Read more

Members shared their experiences with rapidly changing lupus symptoms, with many describing how unpredictable shifts between joint pain, skin issues, fatigue, and organ involvement can make them question their diagnosis or even their own sanity. Several members offered practical advice, including learning as much as possible about the disease, staying proactive with medical teams, getting tested for overlapping conditions like Sjogrens (which commonly occurs alongside SLE and causes dry eyes and mouth), and finding specialists when symptoms affect specific organs like the eyes or kidneys. A recurring theme was the importance of trusting your own body, advocating for yourself even when doctors seem skeptical, and finding strength through faith and community support while navigating the many unpredictable faces of lupus.

A MyLupusTeam Member

Mine cycle. Sometimes I have joint pain, sometimes the Raynauds takes over, sometimes its Sjogrens, or it may be my digestive track. It's always something.

October 25, 2023
A MyLupusTeam Member

Even with "just" SLE, we get rashes and infrequently, discoid turns into SLE. There's not a strict demarcation between the systemic and skin types of lupus. The wolf just does whatever it feels like!

May 21, 2023
A MyLupusTeam Member

@A MyLupusTeam Member Lupus is a bear… or a Rottweiler… ok, no… a bear. Lol!! Just wanted to say sorry for all the issues you are having! I hope you’re feeling better soon. Just want you to know too that I will be praying healing prayers over you and the God of all heaven and earth will be with you because He sees you and He cares for you! Keep holding on to Him and He will keep holding on to you!
God bless you this Christmas..and beyond!

December 22, 2023 (edited)
A MyLupusTeam Member

My symptoms change so fast I question my own sanity…and so do doctors, lol! I don’t go to doctors as much as I used too But I see their looks of disbelief until they check my chart… like they should have b4 they came in… now who gets the last laugh?
Well neither actually 🤔

September 30, 2023
A MyLupusTeam Member

I have not experienced some of your symptoms over my lifetime of dealing with SLE (undiagnosed as a child/teen) and now am 76. Can empathize with the change in symptoms that makes my head swim. A thread to SLE usually is found even for the oddest symptoms. Believe in what you feel and discuss it with doctors even those who are skeptical. You KNOW YOU. God's Blessings and strength

December 6, 2023

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