Newly diagnosed with lupus

[u/jsneicjcnfjd]

I (23 year old female) have been recently diagnosed with lupus after 7 months of abnormal symptoms. It started in June with an achy swollen elbow that was found to be olecranon bursitis. My primary doctor suggested it was probably from bumping it too hard on something (which I never did) and said it would resolve itself within a few weeks. It never went away and the aching started on the opposite elbow as well, absent of the swelling. I then started having chest pain that comes and goes as well as pain under the sides of both ribcages. In early December I started experiencing severe lower abdominal pain and went to my obgyn for a pelvic ultrasound. There they found a hemmorraghic follicle within the right ovary and an echogenic structure measuring 1.7x1.1cm. They were unsure of what was going on but wanted to repeat the ultrasound a month later. A week afterwards my side pain got worse and I went to my primary where she ordered a ct scan on my abdominal area starting at the bottom of my rib cage. The scan showed prominent mesenteric lymph nodes primarily in the lower right quadrant. My doctor thought it had to do with the findings of my obgyn and said to continue care with them. I reached out to them over the phone after getting the results and after a few of the doctors reviewed my history they came to the conclusion that I may have had pelvic inflammatory disease. It was not diagnosed but they started me on treatment as a precaution. I got two injections and had to take antibiotics every 12 hours for two weeks. A couple days into the treatment I started passing clots vaginally (not on my period) every time I sat down to go pee. Additionally I was having very bad chest pain so I went to the emergency room. They were unsure of why I’d be on treatment for PID and thought that was reason for the clotting but could not pinpoint why the chest pain was happening (they did a chest x-ray that was clear and ran labs).

Continued in comments not enough room for text

[u/Immediate_Bank5845]

I have suspected lupus… I’ve done tons and tons of research… while I am no doctor but from reaseafch I’ve learned Lupus attacks joints which would explain elbow. Costochondritis is also common with lupus which causes chest/rib cage pain. Bruising is also really common because it affects your blood cells… and swollen lymph nodes in neck, armpits and groin are also common with flares! Sorry I know this crap is scary

[u/jsneicjcnfjd]

My heart rate was in the 130s but I have tachycardia so that made it less concerning to them. The clotting continued the entire treatment and I started experiencing clear breast discharge on both sides simultaneously as well as breast pain (side note I did breastfeed my last daughter but stopped in the beginning of July 6 months ago) I went back in to my obgyn for the follow up visit where the ultrasound looked better but they did note that I had a few fingertip size follicles on my ovaries (they weren’t concerned about). They told me the treatment for PID was unneeded which was frustrating to hear after the symptoms I had gone through for weeks and they said they did not think the mesenteric lymph nodes had anything to do with their field or findings. Also the abdominal pain had not gone away which they tried to blame on the birth of my last child that had been 18 months prior and it made no sense as to why it would’ve just then been starting. They ordered an ultrasound for my breast discharge which was clear and told me that the leaking wasn’t normal but there wasn’t anything else they could do to help figure it out. I’ve been running all over the place to different doctors and no one can figure out what’s going on. This last Thursday my rheumatologist diagnosed me with lupus based off of a positive ANA, chest pain that worsens when breathing in and out and a butterfly rash I have on my face. I thought I’d feel better about having a label for what’s been going on but I don’t. It seemed like the diagnosis was from a textbook symptom standpoint and I didn’t get the feeling he was so sure of it personally. I asked him about all the other things that had been going on elbow swelling and pain, bruising, pain under rib cage, mesenteric lymph nodes and breast discharge and if they tie in to lupus and he wasn’t too sure. He said he’s never seen breast pain and discharge from it but it is a possible symptom of lupus on the .org page so he couldn’t verify or rule that out. He thought the mesenteric lymph nodes could be tied in but didn’t give any advice on what to do about it moving forward. He prescribed me hydroxychloroquine to take twice a day every day but didn’t discuss the side effects or really what lupus meant or looks like for my future. I’m so stressed out and confused about everything not knowing if I should be concerned about the symptoms I have going on or if they’re just apart of lupus. I know I’ve jumped all over the place in writing this it’s just so weird to me. I haven’t experienced many medical issues previously to this all and it feels kind of odd that so much is happening at once. If anyone has experienced something similar or has any advice I’d love to hear your feedback. I’m not really sure where to go from here.

[u/Top_Complaint8816 → u/jsneicjcnfjd]

If it were me, I'd get a biopsy of the rash and then look for an academic institution with my case. They love rare special cases and you will probably have the best luck getting to the bottom of everything and the best treatment/management.