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Tumid Lupus with SLE Symptoms?

Autoimmune Diseases | Last Active: Feb 26 3:30pm | Replies (101)

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@mantramagic

I was diagnosed with tumid lupus in 2013, 2 biopsies, 3 rounds of blood testing...There was far less research available then and it seemed to be general agreement within the medical community that this form of lupus was triggered solely by exposure to sunlight, florescent light, UVA/UVB. However, though I do not have SLE type symptoms beyond fatigue after exposure or during flare ups, I can say with confidence after years of taking proactive steps to control this illness, that it is not just sunlight that triggers flare ups. It is not just poor diet and alcohol that exacerbates the rashes. It can be a combination of minimal sunlight, heat, stress or prolonged, independent exposure to all three of those sources, per my experience. A diet heavy in meat and dairy seems to lead to longer and larger flare ups. I'm pretty much a vegetarian now. Summer season + heavy meat/dairy diet + alcohol + intense activities, even just within one weekend's time, is a dangerous recipe and can cause such uncomfortable flare ups that I am confined to my home for up to 2 weeks. It has significantly impacted my quality of life even with my commitment to preventative measures ( I lost 30 lbs due to my diet change alone - I should be thrilled right?). I am grateful that I do not have the lupus version that puts my internal organs at risk. However, living a normal life with this version, tumid lupus, has proven to be impossible. I never wanted to see it as a disability. But I am coming to terms with the reality that it sincerely is a disability in that it affects how,where and when I can work, socialize, date, engage in outdoor or even indoor fitness activities..I started anti-depressants a few months ago b/c the acceptance of a life full of "limits" has not been easy. 5 years into the official diagnosis and this is where I am at with it - angry, sad, exhausted at trying to get people to understand the limits placed on me by a "rare form of lupus" that no one has ever heard of and cannot see on me until i'm in the middle of a flare up which I work hard to avoid. Doing things alone is easier..I have a rescue dog. That has been a big help.

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Replies to "I was diagnosed with tumid lupus in 2013, 2 biopsies, 3 rounds of blood testing...There was..."

Hello @mantramagic, welcome to Mayo Clinic Connect. I have a few autoimmune diseases and can sometimes get to feeling down about it when I can no longer do what I used to be able to do. Thank you for sharing your story here. I'm glad that you have a rescue dog and it has been a big help. There is a new discussion created by @hopeful33250 that I think might be helpful for you. I would recommend reading through and joining in on the discussion here:

Groups > Mental Health > Loving Kindness: Live Healthier and Happier
-- https://connect.mayoclinic.org/discussion/loving-kindness-live-healthier-and-happier/

If you don't mind my asking, what breed of dog is your rescue dog?

John

I too was diagnosed with Tumid Lupus in late 2014 and because there is so little information about it it’s hard to figure things out. But I have a few questions for you.. you say that you’ve been confined to your house before with an outbreak. Can u explain that a little. My skin hurts very much sometimes even with the medication but I work ( with my office lights off) and continue
on .so when you are confined are u broken out with a rash or is it something more?? I’m really not trying to be nosy but I’m trying to understand because I have the same illness but it’s never gotten to that point. Thank you in advance for any answers you can provide!!