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Nov 21, 2018 · Tumid Lupus with SLE Symptoms? in Autoimmune Diseases

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.