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Surgery with RA, Ehlers Danlos, Fibromyalgia

  • By Sheri13

    My family keeps telling me you have got to quit having surgery! I’ve had 20+ surgeries in the past 17 years. I only found out about the. RA in the last several years. My doctor noticed my right hand was. drifting to the right, my fingers point to # 2 instead of being straight, the strength has failed in them, thank goodness for the electric jar openers! I had a total knee done in 2000, coming up in the 19 th I will have my right knee replaced. After that I am up for tilt all jaw replacement, then comes the reverse rt shoulder replacement. I’ve already had 3 rotator cuff surgeries on my right shoulder. With the connective tissue disease I never know when I will tear another tendon. My adult children do not understand how much pain I am in since I look fine. I live alone and I’ve had to get off my medication to prepare for the surgery, my hand hurt terribly, my back has flailed up, at 67 I feel like I am 100, my shoulders ache and my legs hurt, why do we keep going when no one cares?

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  • By SusanHU Keymaster

    Hi Sheri13,

    Thank you for taking the time to share your story. I am sorry that you are struggling and I wanted to let you know that we are here to support you.

    I also wanted to share a few articles that you might find helpful:

    Community Thoughts: What do you want more people to know about RA?

    Educating People Is Exhausting

    The Pain of Invisibility

    Surgery May be Part of Your Battle With RA

    Please keep us posted on your journey and know that we are here to help. You might also want to check out our facebook page (www.facebook.com/rheumatoidarthritisdotnet) where others can share their experiences.

    Cheers,
    Susan
    (RheumatoidArthritis.net Team Member)

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  • By Carla Kienast

    Wow! You’ve been through a lot. I’ve had 15 surgeries since my RA diagnosis in 2008 including three joint replacements. I had 1-2 a year in prior to that for several years leading up to the diagnosis. Sometimes there really isn’t any alternatives and frankly, I’d rather have a permanent solution like surgery than years of treatment (medication, physical therapy, etc.) that may or may not work. I’m sorry you’re going through this, but I’m glad you’re still able to live on your own. Good luck to you!

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  • By ktinflorida

    Hi Sheri13. Have you been on the dinet.org website? There are a ton of people with EDS and might have further insight. You may have already found it. I don’t have EDS, but I do have another type of dysautonomia.
    Hope you are feeling better.
    KT

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