New To This Site But Long Term RA’er

Hello I am new to this site, I have had RA for 30 years but actually had it from childhood only undiagnosed.
I went down the path of being told I had exhaustion, glandular fever, the flu, different things for each flare up over my teenage years and into my 20’s then when I had a big flare up in my mid 20’s. Dr’s finally started to really look into it and it still took a few years to get diagnosed with RA and fibromyalgia. So, I was coping ok for a few years then got other illnesses added on, osteoporosis (possibly from the high doses of cortisone steroids) diabetes, diabetic neuropathy, cataracts, teeth removed (again possibly due to medications) heart disease, degenerative disc disease and now panic attacks anxiety to name a few.
We live in the country so any doctor visit means a long trip sometimes 4 hours or more.
As I’m now in my 50’s I have had this for a long time and been coping “I think” quite well but lately I seem to be not doing as well. It takes all my strength to simply get out of bed in the mornings then I wonder why I bothered as everything hurts.
I went through a stage of having severe reactions to many of the drugs tried and cannot take any of the non steroidal anti-inflammatories so that made it hard, and I have only just in the past 5 yrs found a good Rheumatologist and have a good local doctor, so am making headway there. Although, I am on a heap of medications have been looking on this site for a while and get posts on my Facebook page and I like the community seen here so I finally decided to join. Thank you for reading my rant,and hello fellow RA’ers and I too think the name should be changed to RD or something anything that dose not contain the word Arthritis.

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Comments

View Comments (6)
  • glad2bme
    3 years ago

    Welcome! Sorry to hear you’ve suffered for so long with this awful disease, but glad to hear you’ve finally found good doctors to help you.

    I too know that feeling of struggling to get out of bed only to waste a day in pain and accomplish very little. Not every day is like this for me but they seem to be increasing as i too keep adding new issues to the list and especially with the recent cutbacks in pain medicine that doctors are making.

    Hang in there, keep posting and reading, this is a great blog and support group. And I totally 100% agree with you to change it from RA to RD!!

  • Jillian S moderator
    3 years ago

    glad2beme,
    It is good to hear from you again!
    Thank you so much for sharing your support with Charmaine and your kind words about our site.

    I thought you both might enjoy this article that discusses the terms RA and RD in greater detail: https://rheumatoidarthritis.net/living/what-rd-means-to-me/

    Feel free to share more of your thoughts in the comments section there.

    Warmly,
    Jillian (Rheumatoidarthritis.net Team)

  • Nancy G.
    3 years ago

    I’ve had RA for over 30 years. About 4 months ago, I started having severe pain in my feet (especially the right on) the top of my foot and ankle. I can barely walk without severe pain. Has anyone else experienced this? I’m on Remicade and prednisone with Percocet for pain, but nothing is relieving this. I’d love to hear from anyone with this. It’s been preventing me from getting out and participating in life~~~it’s the pits. 🙁

  • Jillian S moderator
    3 years ago

    StillFlaring,
    Thanks for sharing with us. I am so glad to hear that you have found a treatment that is working well for you.
    How are you feeling post-surgery?

    Best,
    Jillian (Rheumatoidarthritis.net Team)

  • StillFlaring
    3 years ago

    Have you tried Lyrica? It is specifically for nerve pain. I just had lumbar stenosis surgery and the nerves are regenerating (slowly), but the pain from this can be excruciating. Lyrica is the only thing I have found that helps the nerve pain in my feet/legs. Good luck!

  • Jillian S moderator
    3 years ago

    Nancy G.,
    Thank you so much for sharing your experience with us and posting your question.
    I am so sorry that you are experiencing severe pain in your foot and ankle. First, I would like to ask if your doctor knows about this (relatively) new symptom? If your treatments haven’t been easing the pain for the past 4 months, it might be worth looking into an alternative option.

    If you are looking to get more feedback from community members like you, I encourage you to post in two places:
    1) Our website forums: https://rheumatoidarthritis.net/forums/
    2) Visitor’s Posts on Facebook: https://www.facebook.com/RheumatoidArthritisDotNet/info?tab=page_info

    Additionally, I wanted to share some articles with you on this topic:
    https://rheumatoidarthritis.net/?s=feet&submit=Go

    I hope you find this information helpful.
    We are here for any other questions or concerns you may have.

    Warmly,
    Jillian (Rheumatoidarthritis.net Team)

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