Jules3002
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?
Racquel H. Dozier Moderator & Contributor
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
Jules3002 Member
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. 🙁
Cody Leach Member
Hi
TinaAra Member
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!
cstiff Member
David Jeal Member
My diagnosis took 6 years, but still early days and learning every day
GabbyFormica Community Admin
Gabby (team member)