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Have fatigue, need suggestions

Posted , 6 users are following.

karen0310
karen0310

I've read, in other threads, that fatigue is worse than pain for some, and so it is with me. I feel like I've "tried everything," and my rheum doc is aware, but really has no suggestions. I started humira some weeks back, and initially felt more energetic, more myself than I had in a while. I haven't had a flare yet on the humira, whereas a combination of MTX, plaquenil, and pred couldn't stop flares happening. I've been pleased.

This week: I am beat. I've let things go for days, thinking if I rested, it would get better. It's not getting better. I also feel like I have some muscle wasting? Atrophy? Like, folding a couple towels made my arms feel like they were coming off. It's distressing. But I think there's no point contacting rheum..she can't advise on "everyday" fatigue so I don't think she'll have an answer for "super" fatigue.

What do folks do for super-fatigue? I'm not even trying to fight it, I'm just lying around like a slug & hoping it'll pass soon. I normally enjoy some activity & staying busy, so this is pure misery. Any suggestions? There are only so many books to read & movies to watch. I'm tired of the cat sitting on me & I am envisioning growing roots in this chair.

0 likes, 10 replies

10 Replies

  • lodgerUK_NE
    lodgerUK_NE karen0310

    Posted

    Karen

    Read 'The Spoon Theory'.

    Also force yourself to walk round the house every hour for five minutes, then go back to being rooted.

    Also the Bowen Technique might just help you.

  • constance.de
    constance.de karen0310

    Posted

    As Lodger suggests read 'The Spoons Theory', it kept me sane for many weeks.  I used to give myself 20 'spoons' per day.  Sometimes the spoons were gone by mid-day.  They helped me to organize my life.  Do little, but often.  5 minutes every now and again will get you moving again and you will feel so pleased with yourself.

    Good luck!

    C. 💐

  • Rowbirdie
    Rowbirdie karen0310

    Posted

    Oh I know how you feel. I spent a long time on the sofa before some meds started to work and by then I had a lot of muscle wastage. I became a Words with Friends scrabble addict, planned lots of holidays we weren't going to do, read the entire Poldark series of books! I did my entire shopping online and we survived on ready meals as I couldn't chop or lift.

    Are you sure the humira is working sufficiently as I personally think I have more fatigue when the RA is less under control. Since my biologic has been working ( rituximab) I have begun  to do more. I joined a hydrotherapy session at my hospital, have done line dancing and looked after my grand kids. I still need to go to bed at 8 or 9 as just need to lie down. But I am working towards more exercise without overdoing it and trying to know what I can and can't do and not to feel bad if I can't.

    The arthritis research site has a useful section on fatigue. Hope you find something there that s helpful

    • karen0310
      karen0310 Rowbirdie

      Posted

      Well, I am wondering about the humira working. I am wondering if this is a new kind of flare. Prior to humira, flares included more fatigue than usual with pain, swelling & stiffness. This is the first "negative" I've had on humira, and it is throwing me for a loop, because I have been getting along just fine. Can't quite forget I have RA but it's been.. good. Better. Maybe I got excited & did too much too soon? My rheum has said I can take it weekly if I need to but that scares me.

      Okay..checking out that website..

  • jane99379
    jane99379 karen0310

    Posted

    Karen 

    Like yourself i had a very bad lapse where fatique was the worse part for me than the pain, I found that i have to do as much as possible in the morning after a semi decent nights sleep, I would then allow myself an hours sleep and i would do a little more. I hope you get better soon

  • karen0310
    karen0310

    Posted

    Thank you all so much. Will check out the website & spoons & Bowen Technique!
  • slm222
    slm222 karen0310

    Posted

    Hi Karen,

    You are definitely not alone in the fatigue being the worst of it. I struggle every day with it. I try to explain to peole without RA that it's not like being a regular tired; it's more like that feeling you get when your body is fighting off a flu and the slightest thing makes you feel run over by a truck; only you don't have the flu and it's ALL the time. It gets really depressing for me.

    I have started my own 'movement schedule' that allows me to do different things during the day, whether it's 5 minutes of gardening or 30 minutes of walking. I'm trying to get back in to doing Pilates (I have a Pilates Reformer) and I over did it the other day and now i'm payiing for it.

    I used to be pretty active doing half marathons, and also doing Pilates 4 times a week. Now just the thought of exercise makes me tired. But by just doing 5 minutes, and not forcing myself to do more than that, I'm hoping it will help. One of the things the RA articles will say is that movement is essential to helping keep limber and not so stiff, as long as it's light and not overdone. Just don't put heavy expectations on yourself. 5 minutes a day is fine!

    Also, I have a friend that has recommended that Spoon Theory book to me as well and I want to get it. It sounds exactly what is needed! Keep your chin up and all the best to you!

    • constance.de
      constance.de slm222

      Posted

      The Spoons Theory by Christine Miseriando (I think that's how it's spelt) is an article, just download it from Google.  CM actually has Lupus, but her theory has helped many, many people to organize their lives - it certainly  helped me.  It is also a good article to show family and friends just what we are going through.

      Best of luck. C. 💐

  • raralady
    raralady karen0310

    Posted

    Hi Karen,

    I know how you feel, fatigue has been the worst symptom of RA - in many ways worse even than the pain. I did an experiment last year, to see if I could just rest a lot and maybe get some energy back. But it doesn't work does it? I rested and rested but I still felt exhausted however many naps I took. And then I had the muscle atrophy that you describe. My arms started to look like skinny sticks and I was getting weaker and weaker. So I realised that I'd have to do stuff but just a little bit at a time. Like walk around a bit, do a bit of gentle stretching, but not too much or I got too sore. Really, you must get up and move as much as you can. I had an exercise routine given to me by a friend who's a fitness instructor. It was 10 minutes long and involved circling ankles, wrists, hips, knees, shoulders and a few gentle stretches. I never did it til it hurt a lot but as you know any movement can hurt a bit.

    Be really good about eating well also, lots of protein and veg. I eat lots of eggs and green vegetables. Just chopping up some cabbage is good exercise for hands and arms and the food makes you better. I don't eat bread and sugar, they just make you more sluggish.

    Good luck

     

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