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Do you experience symptoms of lupus but do not have a diagnosis?

Share your experiences of symptoms here.

  1. Yes, I have skin rashes that I cannot relate to a specific food or occasion, for sure stress plays a big role. Most all of my test results are good, only ANA remains altered. Doctors can’t say it’s 💯 % lupus, others say it’s not, one says it maybe... I have a few symptoms like fadigue, brain fog, joints pain sometimes... not all the time and not very strong. I mostly get everything under control with a AIP diet and natural healing methods like yoga and meditation. I took hydroxychloroquine for about 2 years, no improvements on the itchy skin! I’m leaving the medication... and waiting to see what happens!

    1. it can be so tough to not have answers to what is going on. It sounds like you listen well to your body and take care of yourself. I'm glad you're here in the community. - Liz ( Team Member)

    2. I hear you. Early in my journey my doctor called it "pre-lupus" or "early lupus" because they weren't sure yet. Do you have a lot of dryness? Dry skin can be itchy and dry eyes, mouth, and skin can be common in lupus and similar autoimmune diseases. Glad you have found some ways to manage it and I hope you can find a treatment that works better for you! Thanks for sharing. -Ava, team

  2. I am a 66 yr old woman on the diagnosis journey. I have multiple familiar symptoms.
    * chronic headache
    * fatigue
    * hypertension
    * Type II Diabetes
    * chronic kidney disease stage 1
    * apathy and depression
    * GERD
    * Colitis
    * severe vitamin D deficiency
    * joint pain that seems "different' from my osteoporosis and fibro
    * Degenerative joint disease in my spine
    * Osteoarthritis
    * facial rash (currently not active) although my skin is very dry.
    The last symptom along with the headache and fatigue prompted my doctor visit and set us on the search for answers. Fortunately, my Doctor knows me well and understands my most common response to pain is to " suck it up". So when I came to him he took it seriously and began to search for answers. My ANA was positive so now we are doing the more specific lupus panel. Interestingly, my CRP was not elevated.

    1. I'm so glad you're here in the community. Please keep us updated on your results of the panel and how you're feeling. So many here express that response to "suck it up". I hope you have a nice weekend. - Liz ( Team Member)

  3. I started having idiopathic neuropathy not even close to being diabetic. Then my shoulder started to become painful. My doctor found swollen lymph nodes on my collarbone. They tested me for everything my ANA positive and my anti Double stranded DNA EIA came back positive. Yet they say well you’re a male it’s rare for men to get lupus so it must be something else. Yet I have almost every symptom. I am very frustrated.

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