New here

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

Hi RN!! Welcome to the forum. It sure sounds like a probably lupus (or some autoimmune disease). Do you have sore joints too?? It sounds like you also have Sjogrens Syndrome too (dry mouth, eyes and the swelling under your ear lobes). In case you've never heard of it . . . its pronounced "show-grins". Make sure you mention all these symptoms to your rheumy. And you'll need to be very intentional about caring for your teeth and seeing your dentist often so you don't have problems with your teeth too. (the lack of quality and volume of saliva is really hard on the teeth). There is some good info for new members in "Lupus Resources" . . . link at the end of my signature. Also in that link is info on preparing for your rheumy appointment. I hope you'll keep us posted!! Blessings!

Hi RN and welcome. I don't have a lot to add to what the others said. I hope you get some answers soon though. I know how frustrating it can be to wait and also to know that something is wrong but to not have a name for it yet. I hope you'll keep us updated on what you find out. Take care and I'm glad you found us.