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Diagnosis

I keep thinking I'm making it up

  • By Susannah

    I have sero-negative RA. I have had symptoms since I was a teen, at least as far as I can remember, and I have always just put up with it and pushed through. In my culture, you don’t talk about negative things. You don’t talk about illness, and if you do, you’re succumbing to it. I have believed I should just exercise through it and eat salads, and that has worked….and whenever I worried, I would go get blood tests done and they were all negative, so, I always thought it was in my head… until I couldn’t walk this Summer. One of my knees swelled up so big that I couldn’t push through… I just graduated nursing school, I was supposed to finally start my career now that my kids are in school, but I spent the last few months disabled, and being told to quit acting disabled, and, every so often, I wonder if I am just making it up… it stops feeling so bad. So, I leave my cane at home and I walk around the grocery store like I used to, and then I am full of regret. I had a bad reaction to Plaquenil, so I have just started Methotrexate. I am trying to get a job, but I don’t know what kind of job to get. We were supposed to get a house, but I suppose I can’t get one with stairs now, right? I was a pretty active person, and now I can’t keep up. I get so tired. I just wish I knew if this is how it’s going to be from now on, or if it’s going to get better. I wish I knew what life style to expect and accept.

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  • By EmmieL

    First of all, you are NOT making it up! Five years ago I️ started with sudden onset symmetrical hand and wrist pain. Nodules popped up on my fingers. My ortho sent me to a rheumatologist who confirmed warmth and swelling in fingers, wrists, elbows, knees, and ankles. Most of which weren’t even hurting! Thank GOD I️ have a rheumatologist who said “I️ treat patients, not lab results” as all my lab work was normal. I️t is normal to this day. But he started me on meds immediately. Finally, a month or so ago I️ had a hugely swollen knee and he drew fluid off and had I️t tested. I️t showed Inflammatory Arthritis. I️ literally cried because I️t was the first “proof” I️ had.
    You may want to ask for joint fluid analysis as well. Hang in there!

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  • By CaseyH Moderator

    Hi Susannah, thank you for taking the time to share a bit of your story with us. First of all, congratulations on graduating nursing school! That is a HUGE accomplishment! Amazing! However, I’m so sorry to hear that your RA is preventing you from living the life you were expecting to and having the job you had hoped for. Please know we’re here for you during this time, and beyond. We’re glad to have you in our community, and hope that you’ll continue to share with us and keep us updated on your journey. Have you talked with your family, friends, and/or doctors about these feelings? They may be able to provide you with some additional resources and support. Also, I found this article that you may find helpful, https://rheumatoidarthritis.net/living-with-ra/ It has a lot of information on living with RA, including financial information, workplace needs, and more. Thank you again for sharing with us, and please know we’re here for you. -Casey, RheumatoidArthritis.net Team

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