Palindromic Rheumatism 35yrs

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Picasso99
Picasso99 Member Posts: 5
edited 28. Nov 2023, 14:09 in Living with arthritis

Hello 👋🏼

I was finally diagnosed last year with Palindromic Rheumatism, a rare form of arthritis. I’d had symptoms for around 13yrs. Sorry if there is already an existing thread for PR!

Would be interested to hear from others with this form of arthritis.

Look forward to being connected :)

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  • Chris_R
    Chris_R Moderator Posts: 797
    edited 18. Nov 2022, 16:14
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    Hi @Picasso99

    welcome to the online community,great you have joined us.

    You say that you were diagnosed with Palindromic Rheumatism only last year after having symptoms for 13years. What a long time to wait for a diagnosis, you must be relieved to have a name put to this rare form of arthritis.

    Everyone on this forum has arthritis of various forms and can understand what you are going through in every day life,they are all willing to talk about their journey with arthritis and will give advice and help when they can

    Thought you would like some information on this link.

    https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/

    Please keep in touch and tell us how you are getting on and do go to our forums to chat to others.

    All the best Christine

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • stickywicket
    stickywicket Member Posts: 27,714
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    Hi,

    I don't have Palindromic. Mine's RA and OA. But I found a few former threads for you https://community.versusarthritis.org/search?query=palindromic%20rheumatism&scope=site&source=community

    Sorry, must rush. If I don't do my exercises now I probably won't do them 😉 Very stupid and counterproductive.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Picasso99
    Picasso99 Member Posts: 5
    edited 18. Nov 2022, 17:40
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    Hi @stickywicket

    thanks for sharing the threads and @Chris_R for the link. I have consulted before and it’s really helpful!

    yes, 13 years after so much back and forth, rheumatology thinking it could be psoriatic (but I have no psoriasis), inflammatory more broadly or was it reactive following a bad bout of salmonella as a teenager. Viruses seem to be linked. I have also been listening a lot to current thinking around trauma (physical & psychological) that can contribute to such diseases. Makes a lot of sense but I’m no expert.

    i have a negative CCP marker and all my bloods are really good so it makes it such a struggle to not be able to pin point a physiological reason… I’m currently not taking any meds and have created a holistic lifestyle to help that I’d be happy to share with anyone, appreciate everyone is different…

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