Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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  • Does anyone else here experience a big lack of support from family with being chronically ill? I was diagnosed in December with UCTD (with more of a lupus presentation, from what they're telling me) and Fibromyalgia and told my parents, husband, and close friends. My husband has been incredible, thank goodness, but my parents, particularly my mom, have not been supportive. My mom NEVER asks me...
  • twinmomab

    Methotrexate advice

    I have Fibromyalgia and Lupus. My pain has gotten unbearable and I have young twin girls at home to care for. My doctor has suggested Benlysta in the past but I was too scared. Now I've gotten worse and he wants to try Methotrexate. Can anyone offer any advice on why they like or do not like the medicine. I appreciate any comments or suggestions. Even best time to take it or what to...
  • I am in a terrible flare right now, the worst in a really long time. I keep thinking about how much I don't feel like going to work tomorrow. This has me seriously considering filing for FMLA, my job offers for me to use my sick time incrementally for FMLA but I am really worried and stressed because I don't know if that's the way to go. 1. What all do I have to tell them?2. Who will know about...
  • Hello Everyone! I hate to stop in when I am only waiting on a diagnosis. I was tested earlier this week for Lupus ad Rheumatoid Arthritis. Here are a list of symptoms that have begun at different times over the last 2 years:constant head pain in the back of my head (not migraine or tension)bilateral joint pain in fingers all the time (especially in the morning), also on and off in toes, knees,...
  • I found out something from a leader in lupus treatment/research that I didn't know and simply hadn't put together for myself:I was diagnosed with interstitial cystitis many years ago. A while back it flared up something awful. I suffered, and finally went to see a doctor. They suspected an infection - nope, but lots of blood detected. So, months pass, and I mentioned it in passing to said lupus...
  • Syeera

    Got Results - Frustrated!

    8
    My PCP just messaged me and said my RA and Lupus lab results are unremarkable. Great news, right? No!! It's not that I WANT either of those but I am so frustrated with being in pain all the time and no one can tell me why. Why do doctors stop trying to find a reason after receiving normal test results? It's like - "Well, your labs are fine so carry on! See you next year for your checkup!"...
  • I'm not even sure I belong int his group anymore since so far, no one can tell me what's wrong with me. I just got the rest of my blood test results back. Here are all of them:RF:
  • fallingleaves

    dr suspects

    4
    hello All new to here I had an appointment today with my endocrinologist.It was a follow up to my Hashimotos.He told me that he "thinks" I have lupus.That it is low grade at the moment and he hopes it does not progress.He told me to get alot of rest and no stress.Im guessing he made this possible diagnosis based on my rhumatoloical progression,widespread arthritis,chronic fatigue.He doesnt think...
  • Shespott

    Essential Tremors

    1
    Went to a neurologist today because my rheumy insisted. I have had really bad hand tremors that have progressively got worst along with intermittent numbness to the right side of my face. I was so nervous. She has scheduled me later this week for an MRI and an EEG, but she thinks I have hereditary benign essential tremors. They have got so bad lately that they affect my job and daily...
  • Has anyone else experienced these things with their Lupus? Trying to figure out if it's the Lupus or something else going on....
  • https://www.youtube.com/watch?v=_B6c6k3KtqkThis is a great, short animated video to show family and friends. It's made by the UK Lupus Foundation and I showed it to my family not to garner sympathy but to educate. I'm going to show my mom too. Enjoy! xoBella
  • Hi, new to group. My Ana is positive but just barely. My rheumatologist started with lupus now thinks RA. But I am always sick. My knee to the point I couldn't walk but they could only find a very small tear, gave me a shot and then it stopped. Then I developed shingles. Then nose bleeds, then my hands and fingers swelled up, then my shoulder, headaches, cramping when I bend to the side in...
  • HelloI am new to the group. I started not feeling well almost 2 years ago. FIrst with abdominal pain, nausea, GI problems, lightheaded, and stinging pains mostly in the abdominen and back. Now sometimes I have stinging in my head , eyes, ect.I am being followed for potential lupus because of my lab results. At this point I really would like to know from lupus patients if they have found anything...
  • theashness

    Plaquenil Eye Exam

    4
    Has anyone had the special eye exam you have to get when you're on plaquenil? What do I need to expect? My doctor is sending me to a particular place because they have some special machine, so I was wondering how this differs from a usual eye exam. Also, do they dilate the eyes?
  • I am beginning to wonder if I have Sjogren's syndrome. I have been always sensitive to light but over the last 2 months, I have had pain in my eyes. Also, my eyes are watering a lot over the last year. I have always made excuses for it. but over the last 2 weeks, i have been having actual pain in my eyes. It doesn't really go away with closing them. Which is why I went to see the eye doctor...