Fatigue

JemDoug
JemDoug Member Posts: 2
edited 25. Aug 2022, 09:28 in Say Hello

Hello everyone.

I’m 36 and I have Psoriatic Arthritis. I got my diagnosis just over two years ago. I’m on methotrexate and biologic injections. I just wondered if anyone else really suffers with fatigue?

I have two young children, work part time and like everyone else - have an incredibly busy life. But the fatigue is so much more than standard tiredness. Some days I’m so clumsy and can’t think straight even with the simplest of tasks and I can feel so overwhelmed with tiredness I could cry because I just need to sit down.

For the most part I can just grind through and get on with what I need to, but some days/weeks are just so hard. My husband is a very active on the go person who never sits and rests, so that keeps me going to be similar…. But sometimes it’s just too much and I just need a break.

Does anyone else feel like this? I can feel quite alone with it sometimes and worry people think I’m being lazy or have a bit of a lacklustre attitude and it’s really not the case… I’m just so fatigued!

Would love to hear other peoples coping mechanisms with this.

Many thanks.

Comments

  • Louisa77
    Louisa77 Administrator Posts: 58
    edited 25. Aug 2022, 09:30

    Hi @JemDoug

    Welcome to our Community!

    It sounds like you do really well to mange your condition at such a young age, with young children and work, I'm sorry you are struggling with fatigue.

    Our information does mention fatigue as side effect

    This is a great article we did with people with psoriatic arthritis which you might find useful to read All about psoriatic arthritis (versusarthritis.org)

    I hope this helps you feel less alone and reassures you there are lots of people in a very similar position to you.

    Best wishes

    Louisa

  • stickywicket
    stickywicket Member Posts: 27,213

    Hi @JemDoug. I’m really not surprised you feel so fatigued. It’s a ‘feature’ of inflammatory arthritis (I have RA) and you really are living a full life with both work and young children. When mine were little it was all I could do to look after them, husband and house. I’d to stop working.

    I guess, if you’ve always led a very active life, PsA will have come as a steep learning curve to both you and you husband. Arthritis does affect everyone in a family albeit in different ways. Sometimes we’re inclined to plough on and try to protect our family from it but I think that approach just makes them – and us – feel they are being excluded from a large part of our lives. Adapt and survive is my key phrase. Change what you do or how you do it. Sometimes little changes can make big differences. But we can't live as if we didn't have the disease. That's a recipe for disaster.

    Here are a couple of very useful articles which might help you and them understand.

    http://asone.nass.co.uk/the-gorilla-in-your-house/

    https://creakyjoints.org.au/living-with-arthritis/how-the-spoon-theory-helps-me-explain-the-fatigue-of-chronic-illness/

  • jamieA
    jamieA Member Posts: 381

    Hi @JemDoug

    Like you I was diagnosed in 2020 with PsA - though I was a fit 64 year old male at the time. From the outset I've found myself considerably more tired generally which I've put down to disturbed sleep - I reckon that I waken most early mornings around 4 am. I was put on MTX in Feb 2021 and an adalimumab biosimilar Amgevita in July 2021. Shortly after being put on MTX I started suffering really debilitating bouts of extreme tiredness either the day after or sometimes two days after taking the MTX. I haven't found a solution to this - other than be aware and not plan to do anything too challenging on those days. I take my MTX on a Thursday and tend to go for an afternoon nap on the Friday or Saturday when the extreme tiredness kicks in.

  • JemDoug
    JemDoug Member Posts: 2

    Thank you very much for your comments and links to articles. Just going to read them.

    I think you’re right and I do try to almost act and carry on as if I don’t have PsA but it’s not that successful at times. I think finding the balance is important but I’m just not quite there yet. I have my injections when I don’t have work the next day (I’m a nurse and I’m on my feet all day) so I try and keep things at a slower pace the next day as much as my children will allow (they are just 4 & 6)

    I get a lot of mum guilt as they’ll be asking to do things and go places and I try to put it off as I just don’t have the energy and it sounds so pathetic but the pain in my wrists after pushing swings!!

    Its all a learning curve, I try my best but fatigue has just really beat me these last two weeks. I think acceptance that you’re just going to feel completely rubbish at times is a big part once you have your diagnosis.

    Thanks again for your comments,

    Take care

    Jemma.

  • fimac
    fimac Member Posts: 4
    edited 20. Sep 2022, 16:40

    Hello - hope you are doing better, I was diagnosed with PSa in 2019 and have been exhausted! I am 54 and fall asleep a lot, I did put it down to the PSa but it has become ridiculous and after a trip to the Doctor I have been diagnosed with moderate sleep apnea. May be its worth getting checked out so at least you can rule that or anything else out.

    Tale care

    Fiona

  • Hey,

    I suffer with gnarly fatigue every day.

    Diagnosed with Stills disease last August and have only just come to terms with it myself, so feel your pain - literally. I too have two young children and an active partner - so was I until last year! On methotrexate and on biologics too.

    I find that It's super important to stay within my limits and not over do it.

    I plan my days, if possible, so I know when I can rest after activities.

    If I plan a day out, I'll ensure I have a rest day the next day to recover - usually flare up too.

    I don't know anyone like me, or even close to what I have, so I recognise your loneliness - but be open and honest with people. You're right about grinding on - sometimes you need to just get on with things - especially with kids; I will do everything I can with them and then just suffer afterwards (it is worth it).

    I work shifts for the ambulance service, and have now accepted that I can no longer do them as they're ruining me. It really is about finding what works for you, both professionally and personally.

    All the best

    James

  • Baloo
    Baloo Member Posts: 170

    Hi, I think I had fatigue since I was 20. I remember sitting quietly and thinking, somethings wrong. I'm 67 now and struck down with arthritis. Perhaps the wisdom of the years says take it gently and keep going. Never "faster" "faster", and more like "get knotted", but maybe thats just me. Around 12:00 I get hit by a wave of tiredness. Yawning my head off all afternoon. Drifting off into micro sleeps at its worst. Sleep helps to get rid of this, so I get a lot of support from wearing a smartwatch that can measure sleep. I check the sleep dial every day so I can tell whats happened, and see if what I am doing is helping or hindering. The monthly and annual graph tells a sad story of gradually worse. It gets rough around 4.5 hours sleep which is where I am now, but some nights I can bump it up to 5 or 6 and I can tell this helps.