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Undifferentiated Connective Tissue Disease
Autoimmune Diseases | Last Active: Nov 16 5:37pm | Replies (52)Comment receiving replies
New on here, hoping my comment is in the right column for U.C.T.D. My rheumatologist who diagnosed me said that it's a sister Lupus. So that is how I explain it to friends and family because most people know or have heard of Lupus and also get the "sister of" explanation.
As for what helps me, heated pad/blanket, but also sometimes cooling body moon pillow, liquid over-the-counter meds, simply laying down for a while, know your limits, try not to push through because for me personally I have found shortly after or even next few days I feel a lot worse. I hope this helps a little.
Replies to "New on here, hoping my comment is in the right column for U.C.T.D. My rheumatologist who..."
@creatiff357 Welcome to Mayo Clinic Connect!! I love your doctor’s description of UCTD and its sister Lupus. Sounds like a great doctor. I’m so glad you listed ways to counter heat and/or cold. It’s always good to share because you never know when we’ll have new members and those items will always be ‘gold nuggets’!
@creatiff357 ah yes, somehow relating UCTD to lupus… this can be a useful technique for explaining things. Sometimes docs might say: pre-lupus, that gets thrown around. I haven’t heard “sister to lupus” before though, that one’s new to me.
What’s kind of fun is that my life now is like I was in a soap opera story line: dah dah dah!!! And instead of UCTD, at almost 5 years the (possibly evil?) twin sister lupus has appeared to me in the form of unrelenting rashes!!! No one saw that plot twist!! Least of all me!
But- the biopsy says lupus, so they have officially- and unceremoniously I might add- thrown me out of my beloved UCTD category where I was prepared to live out my days peacefully explaining what my non-diagnosis was to everyone. But instead I’m just itchy nearly all the time. All. The. Time. All the time. OK, not literally. But, at least once a day.
So- anything that you have any inkling AT ALL that you think causes you inflammation… knock it off right now! Use sunscreen like it is your personal religion- don’t even think about looking out a window without SPF 50 on your face, neck, and hands. Think that food makes your tummy hurt or give you more gas? Try not eating it for about 2 months entirely (not even a teeny tiny bite), then add it back in and see if it hurts your tummy/give you gas/diarrhea/whatever. If it does- stop eating it entirely.
Start meditating or doing some kind of self care de-stress daily practice- whatever thing you can do every day.
If I could go back in time 3 years and force myself to do those things- I would At the very least be better prepared to manage my escalating disease right now. And maybe (possibly maybe???) I might could have at least delayed when or if I tipped over into lupus (but only maybe possibly).
Because one the evil twin sister is here, she just does not ever leave.
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Welcome @creatiff357, Thanks for sharing for experience and what helps you with UCTD. I thought you might also like to scan through other discussions that mentioned Lupus and UCTD. Here is a search link that lists discussions and comments from members - https://connect.mayoclinic.org/search/discussions/.