Help with palindromic rheumatism

Hello

I am a 27 year old woman and I have recently been diagnosed with palindromic rheumatism after almost a year of appointments and tests. My rheumatologist has advised that I do not start taking any drugs to assist with the arthritis itself yet, but has not offered any assistance with coping with the condition day to day.

When I have an attack, I cannot go about my daily life and the fatigue makes it almost impossible to go to work. I am missing exercising and the fact that I cannot predict when I will have an attack makes life difficult to plan. I am struggling to get help and advice with any of this.

I'd be really grateful for any advice on managing pain and who to talk to (e.g. GP?) to get help.


Thank you 😊

Comments

  • YvonneH
    YvonneH Administrator Posts: 724

    Hi @myrtleberry , welcome to your online community,

    So its taken a while but you have now been diagnosed with palindromic rheumatism, and you have a rheumatologist though so far he hasn’t got you on any meds. It also sounds like you’ve not been told much about it.

    First here’s our information on it

    It is really comprehensive and there’s a personal story by Zoe, someone like you who has the same diagnosis.

    Your GP will prescribe general pain relief but it’s the rheumatologist who will prescribe disease modifying meds to check the disease. They both need to know how it is affecting you, during an attack, how often they occur and your symptoms, like fatigue. I have different condition to you but I kept a diary, I noted symptoms, level of pain/fatigue, meds and other things I did that helped.

    Take care

    Yvonne x

  • Hi myrtleberry,

    Thank you for posting on the Helpline forum. I am sorry to hear you have been diagnosed with palindromic rheumatism and you are experiencing a lot of pain and fatigue during attacks (flare-ups) of your condition. It sounds as if you have been going through a rough time. Understandably, you are concerned about work.  YvonneH has given a helpful response and link to information about your condition.

    Palindromic rheumatism is a form of inflammatory arthritis. It causes attacks or flare-ups of joint pain and inflammation that come and go. The joints look and feel normal between attacks, and the attacks don’t cause any lasting damage to the joints which is re-assuring. There are usually no symptoms between attacks which is different from other types of inflammatory arthritis where people experience joint problems most of the time.

    It sounds as if it would be good to talk things through with your rheumatology specialist nurse. The rheumatology nurse helpline is usually available for support between clinic appointments.  You can also talk to your GP.

    Your medication may need adjusting and , as YvonneH has said, at some point your rheumatologist may prescribe a DMARD (disease modifying anti-rheumatic drug) which will help to control the disease itself, not just relieve symptoms.

    If at any point you would like to talk things through informally and in confidence, you are welcome to call our Free Helpline on 0800 5200 520 weekdays 9am – 6pm.

    I have provided information below on managing your symptoms, including pain and fatigue, which I hope will help. I have also given a link to our information about working with arthritis. 

    Best wishes,

    Fiona, Helpline Advisor 

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