“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?
Welcome to the lupus.net 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~ lupus.net team moderator
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. 🙁
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 🙏 . My rheumatologist told me you can definitely have a positive ANA and low scores with other tests and still have it and suffer the symptoms from it, especially pain. Because I also had a stillborn baby many years ago due to infarctions or blood clots causing death to a large portion of my placenta, combined with having many lupus positive tests at that time, I certainly remain having lupus. This was over 40 years ago. I’ve since had 3 children, and lupus care during pregnancy has advanced a lot!
Please know your pains are common in lupus, and your Rheumatologist should know this. I am currently using Benlysta and Safenello (spelling?) infusions every month and am seeing a pain specialist. I’m now 62, but have tried Plaquinil. I did not have pain relief with it, however, I still had Lupus. So, I recommend getting a second opinion if Plaquinil isn’t effective, and your current rheumatologist determines having lupus and not getting relief from Plaquinil excludes a positive diagnosis of lupus. My main pains are in my muscles and joints. But more so in my muscles. Especially my legs.
Good luck and may you get relief soon!
Welcome to this support group. I am sorry the Rheumatologist isn't supportive, this happens often when we know our bodies better then the Dr.. As a retired nurse with high antibodies for Mixed Connective tissue disease and Lupus, and a family history of Lupus and I have been on Hydroxychloroquine for 4 years now. I empathize as you go through this journey. The Anti ds-DNA test according to the Mayo clinic level for Positive Lupus includes >75IU/ml, but >30 IU/ml can indicate possible Lupus, meaning follow the patients symptom. Please continue to pursue answers, know that you will have good days and less good days. This disease attacks our bodies each day with a new challenge.. Blessings.. in touch. 
My diagnosis took 6 years, but still early days and learning every day
, Sadly, it's so common that people living with lupus spend years living with symptoms before learning about their official diagnosis. Glad you eventually got answers! It's an ongoing learning process that never ends... I hope there is some comfort in knowing that you are not alone!
Gabby (team member)
