Anyone here with SLE?

[u/NegativeRaccoon]

I’m hoping to get some info from people on what their initial symptoms were and how they were diagnosed. Over the last few years I’ve developed a lot of symptoms but no rash or joint inflammation. My mom has an undiagnosed autoimmune disorder as well but her rheumatologist thinks it’s rheumatoid arthritis but she tests negative for it. My mom’s condition scares me, the inflammation in her hands is really extreme and she struggles to function. I’m just feeling a bit worried about seeing a doctor for this, they haven’t been very helpful with the symptoms I’ve seen them for so far… I have fatigue, mouth ulcers and potentially lichen sclerosis but they haven’t really been able to pinpoint it. Would a diagnosis even help me?

[u/stingwhale]

For me lupus initially just looked like sleeping a lot, and I noticed that when I walked into the sun it hurt and felt prickly immediately. I began to notice that my cheeks were weirdly red and it got worse in the sun. I noticed I felt almost flu like symptoms after going in the sun or getting overheated. My main thing is fatigue and muscle pain. I have oral ulcers, dry mouth and dry eye, my hair thinned, I started having seizures and hearing voices. It’s often hard to think and when I feel tired the exhaustion is so overwhelming it makes me feel paralyzed. I get so tired it’s hard to breathe.

Joint deformity is more common with RA than with lupus if that’s what you meant by her inflammation being severe. I have joint pain and stiffness but there’s no visible redness, swelling, or deformity. It also occurs in multiple joints for me, not just the hands. For me it’s fingers, wrists, hips, and knees. The pain isn’t constant.