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Very long story with questions

  • By Anonymous

    It is mid-July, and I was diagnosed in March. My rheumatologist is great, but I’ve only seen him once since diagnosis, and don’t see him again until September. He tells me I’m medically complex, which might explain my questions.

    At 47 I was diagnosed with breast cancer, had surgery, chemo, radiation. During chemo I suddenly was unable to feel anything below my knees. I had to force/teach myself to walk again as I was told my chemo doesn’t cause peripheral neuropathy lasting more than a week or two. Shortly after the neuropathy started, another, really wicked pain started in my feet. I couldn’t stand or walk much on hard surfaces. A bone scan showed ‘significant uptake’ in both feet. I lived in the very rural Midwest at the time.

    Neither issue every went away. I wasn’t treated because of the belief of docs at the time that chemo wouldn’t cause the neuropathy, and no one was interested in my other pain.
    Ten years, almost to the day of my first cancer dx, I was diagnosed again with breast cancer. This time I was able to go to Roswell Park Cancer Center. They were unbelievably awesome. I only needed surgery and radiation this time around, and they listened, and sent me to their pain clinic, and I’m almost free of the neuropathic pain. But the other issues continued.

    Finally, last summer my fingers started to hurt now and then, over winter they swelled. I was diagnosed with Raynauds. I persisted in bugging my GP, who finally sent me to my lovely rheumatologist. Because of my previous chemo, he started me on plaquenil until my oncologist cleared me for methotrexate, which she did in June. He believes my walking foot pain is from RA.

    So I’m on both plaquenil and methotrexate now. My hand joints are worse. I know it can take months for the methotrexate to kick in. I don’t understand if I’m in a ‘flare,’ why has it lasted at least 6 months? Can flares last this long? And my foot pain hasn’t changed since it started.

    Now It seems every week or so, RA picks a different set of joints to attack. First my fingers, which have finally stopped swelling, then my ankles, then feet-I was unable to walk more than a few feet when it was bad-now my knuckles are painful and weirdly white.

    Is RA a really weird disease or is it just me?
    Thanks for reading this long tale. I’m grateful to have found this site.

  • By Alesandra Bevilacqua Keymaster

    Hi minipearl and thanks for sharing with us. I’m so sorry to hear about your breast cancer journey. That, combined with your other conditions, must not have been easy for you. I seriously commend you for speaking so openly about all that you’ve been through!

    While we cannot provide medical advice here, I’m hoping others can chime in if they’ve had a similar experience. As for flares, they can vary in duration and severity from person to person, and can evolve over time. It may take some time to determine what a flare is in your situation as you learn more about your RA. This article discusses what flares are and how to manage them:

    Please keep us posted on how you’re doing if you’d like to come back and share. Good luck at your appointment in September! We’ll be thinking of you.

    Warmly, Alesandra ( Team)