Diagnosed with Tumid lupus erythematosus (TLE)? Share your experience with us. If you've been diagnosed with TLE, we want to hear from you! People in the past have told us that their TLE was rarely spoken about, and that finding support...Reactions 0 reactions Comments6 repliesDiagnosisAwareness
Relatable Pain ScaleA NP I was seeing gave me the following pain scale to make it easier for me to understand where my pain was, and to help my medical professionals understand...Reactions 0 reactions Comments41 repliesCopingJoint PainSymptoms
Brain fog and low energyHi, I am experiencing brain fog and extremely low energy levels. Yesterday I walked for 2 miles and I was exhausted. I pushed myself to exercise because my rheumatologist said...Reactions 0 reactions Comments7 repliesJoint PainFatigueSymptoms
Feeling like my health care team doesn't care as much as they shouldDoes anyone ever get tired of feeling like your doctors aren't placing enough importance on your symptoms? I've been struggling with sinus tachycardia and hypertension. It feels like there is...Reactions 0 reactions Comments79 replies
Doctor CareMy rheumatologist will only help with prescribing Mycophenolate and taking blood & urine every 6 months. I'm deathly allergic to Plaquenil or Hydroxycloroquine so all I have is the Cell-Cept...Reactions 0 reactions Comments3 repliesTreatment
Staying UpliftedWhat do you all do to stay uplifted? How do you combat the depression that can come with dealing with lupus? ~Racquel~ lupus.net team member...Reactions 0 reactions Comments40 repliesDepression
Invisible Disability DiscriminationFor those receiving SSDI benefits, what are your main symptoms and how severe are they? Have you dealt with others not believing you are disabled because when they see you...Reactions 0 reactions Comments8 repliesTips & AdviceInsurance & Disability
Shame and GuiltDo you have shame or guilt when needing to rest?...Reactions 0 reactions Comments77 repliesCoping
Could this be a malar rash? I've had a rash on my face that comes and goes for a few years now. I also have a lot of joint pain and swelling in my wrist and...Reactions 0 reactions Comments1 replies
What phrases are you tired of hearing?When you tell people you have a chronic condition, like lupus, people have a tendency to speak without thinking... Phrases such as "But you don't look sick," is often stated...Reactions 0 reactions Comments43 repliesCopingAwarenessFriends & Family