Hello everyone. New to the board. Have had a ton of ongoing symptoms and Im getting more and more nervous as the first rheumatologist appointment gets closer. I already have a congential heart defect and have had multiple heart surgeries, so the thought of having lupus is just thrilling me as you can imagine.
Alot of symptoms have seemed to have presented in the last 3 weeks, but now that lupus was mentioned today after my 3rd ER visit in 2 weeks, its all coming together, and I realize Ive had a lot of symptoms for awhile....months. Here are some symptoms... classic butterfly rash- looking back Ive had it for a long time and never thought anything of it, but about
3 weeks ago its started to hurt and itch horribly. Eyelid rash and major swelling- to the point when it first came on my husband jumped back when he
opened his eyes in the morning. It TERRIBLE when I first wake up, but once I am upright, the swelling goes down but red rash remains. Small, non painful nodules right under my earlobes that seem to come and go. Headache, intermittent blurry vision, joiunt pain/swelling, fatigue. Insonia and trouble staying asleep. The "itchies" when I would lay down in bed for the night. All of a sudden, severe photosensitivity. Reflux/vomiting with certain foods that have never been an issue in the past. Dry mouth and intense thirst at times. Patchy, itchy dry rash on neck. Rash on upper arms. Allergic reaction to bactrim. Decreased sex drive (and Im a newlywed!!!)
Ive had all kinds of scans, bloodwork, seen ENT docs, ID docs, my cardiologists, been on 5 different antibiotics, and a methylpred pack which was the ONLY thing that got rid of the eyelid swelling/butterfly rash. That pack ended last Thursday, and then I woke this morning with it back in action. Yesterday at work I had the chills, was really tired and just didn't seem "myself" and knew something was coming on again. I went to the ER and prescribed another pack.
Sorry Im rambling, Im just frustrated, and scared, and stumbled on this board on google. Does any of this sound like what you went through when diagnosed?? Thanks