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Not sure if I have lupus.

Hi there hope your all well. I been having widespread shooting type pains muscle aches very distressing but not severe but enough to mentally stress me out a lot and on and off burning sensation mostly in feet and hands. Have a long history of chronic anxiety which I know can cause some crazy symptoms. I’ve had blood tests and ANA came back borderline which I know can happen in normal healthy people then they sent for DSDNA which came back elevated at 97 I believe this can go up to over 400 but my ENA came back negative. Obviously I broke down thinking I have lupus but now being told I don’t fit the criteria as I don’t have the clinical symptoms or that of other conditions and all my full bloods came back normal. Just wondering if anyone had any experience or advice with this? Don’t have a family history of autoimmune disease and I’m a 33 year old healthy male and I know lupus can be rare. I’ve been taking PPI’s for a long time and have seen although rare can be a cause of drug induced lupus as I can’t understand how I would have this. I appreciate any feedback and answers. Best wishes. Jordan

  1. Jordan, Hi! It sounds like you have been going thru a lot lately. I can totally relate. Sadly lupus is very hard to diagnose bc the symptoms you are having can look like so many other illnesses. For me, I started having symptoms that we couldn’t figure out the cause, 10 years before I got diagnosis. I know I’m not alone in that. I’m sure there are a lot of others who can relate. Out of exasperation my pulmonologist decide to run a ton of labs including things like an ANA, sed rate etc. Finally my ana came back positive. People can also have what’s called sero negative, which means their labs are negative. But they do have lupus. My piece of advice would be to record every symptom, every day. You may already be doing this but it’s so important. You can do it many different ways I’ve done it like a journal, as well as on a planner that has daily spots so you have room to document. I’ve found, both as a patient & as an RN, that doctors are so much more receptive when they have physical documentation of what’s going on. I document my pain level, highest and lowest, as well as anything you might have done to treat pain, or other symptoms and if it helped. I also document all other symptoms I have that day. I am also going to tag two of our amazing male leaders who have lupus. I feel like they may be able to offer you something I can’t. I hope you get answers soon!!



    Amber RN, BSN, Team Member

    1. ,
      Thank you so much for your feedback and kind words of support.
      I truly feel your diagnostic frustration.
      You may have seen this article already, but I'm sharing just in case: https://lupus.net/diagnostic-criteria
      We're so grateful you found this community and hope you continue to advocate and search for answers.
      My best, Doreen (Team Member)

    2. hi! I’m so glad that you have had such a great experience here. That’s always the goal. I can agree it’s the most frustrating thing in the world. It took ten years of all kinds of symptoms to finally get a diagnosis. There is something called sero-negative lupus. Where your labs don’t reflect a diagnosis. I don’t see it diagnosed very often tho. All you can do is continue to journal/track your symptoms and advocate for yourself. Which isn’t always the easiest. Have the drs set a treatment plan for the tumor? Will they be biopsying it? Or removing it? I feel like you have said this but I can’t find it now. So if you have I am sorry for asking again. Sending you Big hugs!

      Amber RN, BSN, Team Member

  2. I also wanted to say if you have not seen a rheumatologist yet. I highly suggest that you try to get into one. They just have a better knowledge base of the conditions that could be the cause of your issues.

    Amber RN, BSN, Team Member


    1. thank you for reaching out . Yes, I see my rheumatologist every 6 months , along with my neuro oncologist, dermatologist, pcp, and vascular . I was very lucky and was able to put together a wonderful team thanks to the people I got to know through my job as a nurse as well . I’ll tell you what though … there is nothing like having a support system made up of strangers who essentially scone friends and family from all over the world as they too are experiencing the same .

    2. I’m so glad you were able to get such a great team. It’s nice having drs that you know even just professionally. There is something kind of calming that you don’t have to start a whole new relationship with your provider. And you are 100% right that it’s so awesome to have a support system online that totally understand what you are going thru. Two of my very best friends I met online like 10years ago. And I’ve never met either one of them in person. But we talk daily. It’s definitely a little weird. But so rewarding at the same time. If we can help you in any way please reach out. Sending Big hugs!

      Amber RN, BSN, Team Member


  3. We appreciate you reaching out.
    As Amber mentioned, diagnosing lupus can be quite challenging.
    I thought I'd include a few articles that may provide some helpful information: https://lupus.net/causes and https://lupus.net/tests.

    In the meantime, please know this community is always here for help and information.
    Kindly, Doreen (Team Member)

    1. Thank you so much !

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