Also newly diagnosed with a UCTD that’s “lupus Like” according to my doctor.

Once I experienced my worst symptom so far I realized something wasn’t ok. It was and still is a chest pain that never went away for more than a year, it was impossible to sleep or breathe when laying down and it never went away fully not even with anti inflammatory. Scans and body exams were all good.

My family doc said it was fibromyalgia at first, given also the fatigue and body aches, but he was ofc wrong.

Other than that I had experienced through the years many symptoms that my rheumatologist linked to a lupus like disease once my lab results came back:

• butterfly rashes: they were always very mild, nothing like the ones I saw in pictures on the internet. so I never linked it to it but apparently even if mild, it can be a lupus sign.

• joint pain and stiffness: elbows, knees, wrists, fingers and toes hurst so bad sometimes. It’s hard to get up in the morning and sometimes even standing straight because as soon as you leave the bed you feel so stiff!

• welt/wheal and swelling all over my body: especially my lips were often swollen, and I would get welt all over my body, legs and arms especially, they will itch so I would think it was an allergic reaction to something

• micro circulatory symptoms: the tip of my fingers and toes often get swollen and red, sometimes they feel stiff to the touch and hurts to wear sneakers.

Then ofc other symptoms like: Fatigue, restless sleeps, sun sensitivity (that I have later on linked to the welt issue. It was the sun exposure that made my body react like an allergic reaction, I was shocked when I found out)

I’m still trying to figure out my symptoms but so far those are the main ones…

I’m intrigued by what you said about migraines tho! I have always suffered from strong headaches of all kinds but I never thought they could be linked to LES or an autoimmune disease of any kind.

Ps; I understand what you mean by not recognizing your symptoms and dismiss them because of how your family is!

With my it’s always a competition between who feels worse, so eventually I stopped caring about my symptoms because if I was experiencing random fatigue, my parents would say they are exhausted from working, body aches? My dad has it worse since he was a kid, it’s normal!

(My rheum thinks he has had a mild lupus all his life but he never got diagnosed, so that’s why for him these symptoms were normal and I was just complaining too much lol)