Lupus Tumidus

[TumidusG]

Hi All - After months of burning and itching skin, intermittent exhaustion, irritability, on and off leg swelling and joint pain, I have been diagnosed with Lupus Tumidus. Rheumatologist has said it is not SLE and will likely never turn into SLE. (I am not convinced but one battle at a time).

Does anyone have Tumidis Lupus as it seems rare enough?

Also, how do you get by? Since being diagnosed a couple weeks ago I feel like I’m in a fog, I look fine but I don’t feel fine. I’m in my early 30’s, single but had a path for my life and now it just seems so unknown. I’m finding people around me just don’t understand as because I look totally fine from the outward and my diagnosis was not cancer that I should feel normal and not worry.

[MusicalFurbaby]

Hi TumidusG, I have SLE rather than the Lupus Tumidus you mention, but I can certainly relate to much of your experience: burning/itching skin, fatigue, joint pain, general moodiness, and uncertainty about the future. Getting used to a new diagnosis takes time, it’s a big deal, and yes most people will not understand what you’re going through.

Give yourself a little time to get used to the idea, and do something nice for yourself when you’re feeling ratty. In the meantime, we’re here for you ☺️🌻🌈

[stiff19]

best wishes 🤗

[FredaN]

I don't have Lupus Tumidus, but I get your frustrations. It almost seems like there's cancer and there's everything else when it comes to most people. It's harder when it's something that people have never heard of either.

I share some of your symptoms too and the exhaustion/irritability can really get to me at times - the two are probably feeding off each other at this point! Hope you can get your head around the diagnosis with time and go easy on yourself now ❤️