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Do I really have RA?

I was diagnosed 2 yrs ago, Seronegative RA. I was put on Plaquenil. I’m not sure it does anything for me but hard to tell. I don’t have much swelling. Mostly pain and stiffness, phantom fevers, flu like symptoms particularly if I am under stress or working too hard. I get weird feelings of bronchial irritation, sinus swelling, headaches daily from a royally messed up neck. My feet feel like I’m walking on gravel barefoot, my hands are always painful and I am exhausted. But…. every test says normal. Only once had elevated SED rate. How do we really know if we have it. I have creepy nerve sensations on my face and crazy legs at night. Insomnia too. I wish I had proof so I would quit wondering if it is something else. Anyone else have same experiences?

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Comments

  • qejm0g
    2 months ago

    Yes yes and yes to all of your symptoms and questions! I questioned my diagnosis too when I first heard the words rheumatoid arthritis (disease-RD). But with more research on my own and speaking online and in person with others with RD, I gradually accepted it.
    I was a very athletic person my whole life-I played soccer-goal keeper until I was in my early 40’s. I blew off my aches and pains as a result of playing sports all my life. But what convinced me was the bilateral nature of RD. Both my elbows swollen and hurting at the SAME time? Hard to walk or sleep on either side because both of my hips were hurting? Yup it’s RD.

  • jonnyohio
    5 months ago

    I also never tested tested positive and SED rate was elevated on twice. I also had a mild fever once on a visit and elevated white blood cell count. RA is not diagnosed with just a blood test. To achieve and diagnosis you only need to meet the 4/7 criteria. Swelling isn’t an indication of disease severity either. Both me and my dad never had much swelling, but my joints and cervical spine took damage regardless, and my dads fingers and toes are all messed up. Plaquenil alone did not do much for me either only reduced the symptoms a bit. I didn’t see a difference until I was also given Sulfasalazine. They will not start you multiple drugs at once. I started on one, then a few months later the other, and the dose for Sulfasalazine was increased slowly until I reached 4g daily a month ago. It has taken a year to get to the point I’m at now. You will have to be patient and persistent, and you will have to attack it from all angles. If you aren’t getting the help you need from your doctor, go to another one. Read my story to see what all I did to get mine under control. You have a lot of the same symptoms I have had for year.

  • Debbielinn author
    5 months ago

    Thank you so much jonnyohio it was very encouraging to hear your story and your comments

  • jonnyohio
    5 months ago

    I have seronegative RA.

  • jesiandrea
    6 months ago

    OMG you are describing exactly my symptoms and I have RA seronegative too !
    Just got diagnosed this week and I am thinking
    Is it ???

    44 year old

  • Debbielinn author
    5 months ago

    So sorry to hear that jesiandrea

  • Debbielinn author
    7 months ago

    Thank you so much for your response Monica!

  • Monica Y. Sengupta moderator
    7 months ago

    Hey @debbielinn! Thanks for sharing your story.

    I understand what you are going through as I am also seronegative. I have been asking the same questions for the last eight years! I experience clinical symptoms but do not have any testing to back it up. I thought you might like these two articles about seronegative experiences (one is mine):

    https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/ and https://rheumatoidarthritis.net/living/ra-or-not-ra/

    Have you spoken to your doctor about your concerns about your medication? Speaking from personal experience, it took us a while to find a regime that worked for me but we kept on trying and pushing. Now, for the past year-ish I’ve been in a good place.

    I wanted to also echo David and assure you that you are definitely not alone in this. There are many community members who are also sero-negative!

    Please reach out if you ever need to talk or vent! Best, Monica

  • David Advent moderator
    7 months ago

    Hi Debbie,

    I’m so sorry to hear about your diagnosis of Seronegative RA. That diagnosis, in particular, can be particularly damaging because it engenders the exact feelings of confusion that you describe. I have heard members in this community express the exact same symptoms you describe– pain and stiffness, phantom fevers, flu-like symptoms, etc. Rest assured that you are not alone and that this community is always here to support you!

    – David (RheumatoidArthritis.net Team)

  • Debbielinn author
    7 months ago

    Thank you so very much David!

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