Just diagnosed ...sorta?

Hello all! I recently was having intense pain and swelling in my hands.my doc did some blood work and then sent me to the rheumy. I walk in the room and she drops the L bomb…lupus! We then went over if I was having other symptoms,and I couldn’t believe all the weird things that had been happening to me was related
-joint pain
-hair loss
-extreme fatigue
-random fevers
-mouth/nose sores
-kidney/bladder infection
-extreme dry eye,sensitivity and sight
I was in shock that any of this was connected, it all seemed so random and out of no where. Other than the fatigue and hair loss ,everything was new. Then the next doctor came in and interrogated me and acted like I came in the office with Web MD papers demanding narcotics!!! She told me they just have to watch cause it may go away due to my other health issues…ok,thanks. A she left the room she said " call if you get a rash on your face" lol some bedside manner!! I have a second opinion set up.
I’m taking methotrexate, seems to help slightly. But mostly with the swelling.
I knoticed a lot of us have the same health problems,mine include
-low b12(getting weekly shots)
-gluten intolerant
-low vit D
-H.pilori problems on and off
-overgrowth of intestinal bad bacteria
on and off
-gallstones(gallbladder removed )

  • anxiety
    I follow a strict gluten free diet and also do not eat meat or dairy. I do have seafood tho. I am willing g to try anything alternative I can lol!! I work about 30-35 hr/week as a hair stylist and go to dental hygiene school 3 days a week doing clinic rotation. It’s getting really hard to make my hands function.i drop things a lot,and have a hard time opening and closing them. They kill!! Some days are worst than others. And the fatigue and bladder kidney sh#t is so rough. So that’s me. Does anyone have any advice before my appointment at the new doctor. The other doctor actually never told me what lupus was,what to expect or what to do! I’m feeling really crappy and kinda alone, ya know. Ok sorry bout the insane long post!!! Xoxoxox

I find doctors don’t want to give lupus a face, they don’t want to over diagnosis, let them investigate and do their jobs. You want to have medical allies, they are trained.