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“Almost” Newly Diagnosed

Hello everyone. I’m glad I found this community. I am in the process of possibly getting diagnosed due to lab results. (Ive tested positive or ANA Titer and Anti-dsDNA, etc) According to my Rheumy, my scores were low enough and I look “normal” that I might or might not have it. My question is, can you look “normal” and still have Lupus? I know I feel horrible on a daily basis, but I have to trust the Rheumy right?

  1. Welcome to the forums. To answer your question, ABSOLUTELY! You can absolutely look "fine" and "normal" and still have lupus. Most times people are saying to lupus warriors that they don't look sick. It is a blessing to not look how we really feel. There will be some good days and some rough days that you will face. Know that you will definitely get through them.

    You are right, It is very important to get a rheumatologist that you can trust and that listens to you and knows about lupus and its different affects on the body.

    I hope you get answers and find that doctor that will help you get a treatment plan in place to help ease your pain. Thanks for sharing please keep us informed as to what happens.

    ~Racquel~ team moderator

    1. Thank you Racquel. I've been trying to figure out what is going on for years and find my pain is getting worse as I age. When the Rheumatologist went over my lab results, he made it sound like I don't have it because my lab scores were lower than others (all my research says my lab results point to SLE) and that I don't have the "look" of lupus (i.e. rash, swelling, purple fingers). He's thinking more along the lines of Fibromyalgia, which I've had for years. However, he had me start on Hydroxychloroquine to see if it helps me. If it does, then I have Lupus. At this point, I just want to start feeling better. I have a lot of muscle pain that "burns" and it's not just one part of my body...pain jumps around. Frequent headaches, etc. Hoping for results within the next couple of months. 🙁

      1. Hi , welcome to our community 😀. I hope that you are able to find some answers now that you've started hydroxycloroquine. Let us know if there is anything we can do to help support you. Sending positive thoughts your way 🙏 .

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