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Fatigue and RA

Posted , 10 users are following.

caz53535
caz53535

Hello all,   I get really tired all the time, and sleep a lot, I do have RA,  Does anyone else get this tired not during a flare?   Or with a low disease activity?   (I have been lucky recently as not experiencing other problems) - this is the worst symptom for me at the moment, and just wondered whether it may be caused by something other than RA?   Thanks

1 like, 25 replies

25 Replies

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  • lrevenden
    lrevenden caz53535

    Posted

    I've recently started taking Lyrica to help with the fatigue and brain fog as it's quite a major symptom for me. Whilst it has helped me I've still had to spend most of today sleeping!
  • slm222
    slm222 caz53535

    Posted

    Absolutely, caz53535. It's my worst symptom as well. The overall malaise and tired feeling makes me not feel good every single day, whether I have a lot of pain or a little pain; the tiredness is the worst.
  • cheria
    cheria caz53535

    Posted

    For myself, sometimes I'm not sleeping deep enough at night, or getting in the 10 - 12 hrs of sleep needed with the RA diagnosis, sometimes I'm feeling depressed at a subconscious level, and not getting enough fresh air and exercise, and when not staying on top of nutrition and supplements, I am at times experiencing adrenal fatigue from unmanaged RA.
  • frances85589
    frances85589 caz53535

    Posted

    Yes Caz I'm the same.I have RA as well as fibromyalgia. My head is always wanting to shut down I want to close my eyes at times while walking.Even if I have a nap I still feel zonked out.
  • gemma83759
    gemma83759 caz53535

    Posted

    Hi

    I also get really exhausted. Even when the pain and inflammation is minimal I have spells lasting weeks when I feel all I do is sleep, it's debilitating. My advice would be do what you need to do, lots of rest and sleep when you can and don't fight it.

    Take care.

  • barbara58180
    barbara58180 caz53535

    Posted

    Yes, it's so fatigueing, people just don't get it. Take a rest, and do your best.

    Taek care

  • kim94523
    kim94523 caz53535

    Posted

    Yep...the fatigue is crushing.  On "good" pain days, I can handle on "major" activity a day and then I have to lie down for the rest of the day... like going to the grocery store.  Today, I sang for a couple hours in the morning and have been on the couch since 2 p.m.  I had no energy to cook dinner.  I kept trying but having to lie down.  No one gets this except fellow sufferers.  I wish I had a sign to wear sometimes because all anyone says is, "How are you feeling? You look so good!" like we wear this disease on the outside.  No one wants to really know "how you're doing" except on these forums.  I feel for you.  This sucks.  But, that said, I am newly diagnosed (though suffering without a diagnosis for more than 2 years) and haven't had treatment.  Maybe my disposition will improve when I get treatment... I hope smile
    • gemma83759
      gemma83759 kim94523

      Posted

      That's the thing with ra only the Eagle eyed people can spot when you're having a bad day, if you're having trouble getting up or walking or having a "bad hands day ". I'm glad I stumbled by this forum, I've been struggling for years and after being diagnosed 5yrs ago I didn't know anyone else with it!! You feel so isolated.. That said I often need to give myself a kick to get going and get on with most days. Much rest and sleep to everyone.
    • Light
      Light gemma83759

      Posted

      Yes. We can't really expect others to understand, except for our closest loved-ones... who will eventually see you sprawled out on the sofa in the middle of the day...

      What to do? We must take responsibility for informing them, for reminding them that this is a largely invisible disease that has horribly debilitating effects, and once we've informed them, do whatever we need to do to take care of ourselves without asking for their permission.

      It's a very grounding and good experience to look after our own needs in that way without getting p*ssed at them. It's one of the ways we learn to love ourselves.

      Sometimes we may have to patiently remind them but try not to get agitated because they can't read our minds.

      Those who care about you will eventually get it.

    • Light
      Light gemma83759

      Posted

      Anyone able to tell me why my perefectly helpful post has been hijacked by the moderators? It didn't contain any of the offending material that I can identify.... any other reason?
    • gemma83759
      gemma83759 Light

      Posted

      No idea, one of mine was deleted too, I was only on a fatigue rant!! Strange!!
    • kim94523
      kim94523 Light

      Posted

      Omg!!! That was the most beautifully said summary I have read yet about taking care of ourselves with an invisible disease around others! Thank you for writing it. You are a "light" - thank you.

      I'm on a crowded train in the handicapped seat getting the curious/evil eye because I "look so good"...there is no way I can stand. I could barely walk to the train station. I wish I could wear my handicapped sign around my neck. Maybe I will wink

    • slm222
      slm222 Light

      Posted

      Yes! So very true, Light! Thank you for that!!
    • gemma83759
      gemma83759 Light

      Posted

      Yip very well said. I definately wouldn't want anyone close to me to read my mind on a bad day!! I try to pull myself out of negative thoughts or it would b too consuming. We should all try to respect and listen to our bodies, if we need to lie on the couch all day then that's wot we have to do. X
  • Light
    Light caz53535

    Posted

    Yes, definitely.

    Though as my remission increased, I did notice I was tired less often.

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