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Palindromic rheumatism & CFS

Posted , 4 users are following.

Sellins
Sellins

Hi, has anyone got any experience of being diagnosed with both? I want to pursue a diagnosis of palindromic rheumatism with my Rheumatologist at my next appointment. I have RA, but since reading about palindromic rheumatism l am convinced that my problems first surfaced as PR. I have been seeing a Rheumatologist for over twenty years and PR has never been mentioned even when he reviewed my case more recently and suggested CFS. If I get the diagnosis of PR it won't change much in terms of treatment, but it seems important to me to keep untangling the many symptoms to get correct treatment if new treatments come along.

0 likes, 6 replies

6 Replies

  • caitlin39841
    caitlin39841 Sellins

    Posted

    hi sellins. yes, i was diagnosed with PR some years ago alongside ME/CFS. i was commenced on Naproxen, but it doesn't have much impact.

    like u, i'm also RA positive.

    Caitlin

  • Sellins
    Sellins

    Posted

    Thanks for your reply. Did you suffer the acute muscle & joint pain of PA before you were diagnosed with RA? Do you wonder about whether you have CFS or actually it is all the PA & RA messing with your immune system?

    Although I have been officially diagnosed with CFS I am unsure really. I suppose l accept that l have burned out causing CFS, but I still think the RA/PA is at the heart of my problem. I also think it suits the Rheumatologist to pass off the non joint damaging symptoms as CFS as it enables them to report that the RA is under control and therefore they are doing a great job.

    I sound a little bit bitter today, it must be the weather!

    • caitlin39841
      caitlin39841 Sellins

      Posted

      hi Sellins. i guess it's difficult to know for certain what comes first: whether the infection or a depleted immune system.

      yes, i've been diagnosed with ME/CFS via a mitochondrial blood test. i tested positive for the RA factor. as my flare ups of joint/muscle pain is cyclical (every 3 weeks roughly) & there wasn't concurrent or equal damage to the joints the Rheumatologist said it was PA. however, the naproxen just took the edge off the pain in the begining. it didn't stop the flare ups. i've sense come off them as they didn't seem to do much.

      Caitlin.

  • Pavoniarem
    Pavoniarem Sellins

    Posted

    Hi Sellins

    I have had RA for 10 years and in January got a second diagnosis of Palindromic RA.  I came across an (PA) article in the Arthritis UK website which described my symptoms to the letter.  I also felt that it was important to get the right diagnosis as I had been refused a steroid injection in December from a nurse on the basis that "palindromic Rheumatism" was not on my records. I wrote a (long) letter to my consultant, got an appointment and the diagnosis added to my file.  He had used the term "palindromic" throughout my 10 year history but had never shared that with me or made a firm diagnosis. I’ve just had a terrible flare in both shoulders at the same time which is new development.  The pain was off the chart.  Good luck getting your diagnosis and if you have any other questions, get in touch.

    • Sellins
      Sellins Pavoniarem

      Posted

      Hi I am really interested to hear your experience. I read the same article and thought it described me perfectly. I went to my Rheumatologist yesterday and asked to be diagnosed with PR. He said that as I had a positive blood test for RA this effectively trumps PR and you cannot have both. As he ignores everything I say about how I feel and writes to my GP saying everything is under control, I feel the most painful aspects of what I suffer are overlooked. I have never read anything about RA which suggests the type of symptoms PA has and over 25years I have read a lot. I have searched the Internet for more information but it is very limited as I'm sure you know. I have joined a couple of Facebook groups and will ask for advice on there. I do hope you get the support you need now that you have the diagnosis, it is like untangling string when you add CFS into the mix as well.
  • maureen96014
    maureen96014 Sellins

    Posted

    Hi Sellins

    I have PMR and take predniolone steroids for the condition which appears as pain and stiffness, very seveere, in neck hips groin arms etc to the point I am unable to move or bend or walk before I was diagnosed and given the steroids. Thus all started two years ago,

    But recently I have constant pain in one of my big toes and cannot wear even small heels - I have been having bowens therapy for my PMR which has helped greatly but although my therapist has been concentrating her work on my big toe just recently the pain never goes away for long.

    At the moment I seem to be fairly Ok first thing in the morning and sometimes this can last for a few hrs but then the pain comes back with a vengeance. When I have the pain my toe and the part of my foot just at the bottom of the big toe where it meets my foot, goes a reddish purple colour and is swollen and I cant bend the toe at all - it also hurts to walk on it and also when I am just sitting, there seems to be a constant pain that even pain killers does not get rid of - is this PR?

    I have never heard of this before but was just on my PMR forum and someone else had the same symptoms in their foor as me and some one else suggested to her that it might be PR

    Thanking you in anticipation for your help

    Maureen

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