Hello and advice please about fatigue and Palindromic Rheumatism

Meish73
Meish73 Member Posts: 2
edited 21. Nov 2023, 08:35 in Living with arthritis

Hi, I was diagnosed with Palindromic Rhuematism in September and have been on Hydroxychloroquine 400mg per day. I am still having flares every other week and my hands and wrists are always stiff and painful. Recently I have been hit with chronic fatigue, feel so ill and lifeless for about 5 hours in the morning then get a rest bite for a few hours before it starts again. I'm not due for my review until 18th Dec and after many phone calls can't get any help. I have just turned 50 and my life feels like its in bits. I can't function, can't move, can't go to work. Does anyone else suffer with the horrendous fatigue and how do you cope/help yourself. TIA

Comments

  • Ellen
    Ellen Moderator Posts: 1,956

    Hi @Meish73

    Welcome to the online community. I see you were diagnosed with Palindromic Rheumatism in September and presumably stared taking Hydroxychloroquine after that appointment. You are probably aware that it is still early days for your treatment to be fully effective, but you are really struggling with fatigue every day.

    I hope it's ok with you, but I am going to move your post to the living with arthritis category where it should get more views. I am also going to change the post title to hopefully attract people who might be able to help.

    While you wait for someone to come along I would just like to pop this one link in which might help you manage your severe fatigue:

    https://www.versusarthritis.org/news/2022/april/5-ways-to-help-with-fatigue/

    My very best wishes

    Ellen.

  • frogmorton
    frogmorton Member Posts: 30,325

    Hi @Meish73

    You do have my sympathy there's nothing like this sort of genuine fatigue/exhaustion is there?

    Luckily your appt at the hospital is very soon (for Rheumatology).

    I have no solution for fatigue other than resting which you have no choice but to do anyway. Having said that someone here once advised me to set alarms so that I don't oversleep. At that time I was collecting my children from school. Not a problem for me these days.

    Basically it means your disease is not under control yet and it's possible the hospital will look at changing your meds or adding something else to the mix at least temporarily when you go in December.

    My other advice is to do your best to eat healthily, if you can and look after yourself.

    I hope your employer is being reasonable too.

    Take very good care ((()))

    Toni x

  • Rina
    Rina Member Posts: 89

    Hi @Meish73

    Sometimes the fatigue that comes with arthritis is overwhelming isn’t it? I think I’ve learned that you can’t fight it, but just have to sit down or lie down and take it easy. As @frogmorton says, it’s early days in terms of your treatment, so hopefully by the time your appointment comes round in December, you’ll be feeling a lot better.

    All the best, Rina 😊

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