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Tips for extreme fatigue and group meetup advice?

edited 7. May 2014, 06:03 in Young people's community
This is my first post so firstly hello to everyone out there. I just wanted to ask if anyone had advice regarding extreme (it feels extreme anyway!) fatigue and the group meetups. I’m 27 so realise I’m older than the 25 age limit but feel that am probably much younger than the others in the main forum area and hence different life stage with all the problems that brings!

I guess I should set out my illness to keep in tradition with a ‘newbie’ post though. So anyway I have been diagnosed with psoriatic arthritis for 6 years and yes it has been a battle – the failed meds (until I finally got on humira which has been a god send), the sleepless nights lying in bed in agony, the loss of friends (one year without alcohol due to being on methotrexate does this to you at my age). I have had to change my lifestyle completely but realise that parts of this have been for the better – I’ve given up smoking, I rarely drink now (except Fridays!), fallen in love with swimming, go to about 20 gigs a year (friends aren’t that bothered about not drinking at a gig whereas they feel awkward meeting up in a pub if you are not boozing with them), started drinking tea (green of course lolz) and try to read books as much as possible (energy levels provided). However house parties are a no go, same to general meetups with mates due to lack of energy after work. Life can feel very dull and mundane at times! Although I did go to a festival last year which I was worried I wouldn’t cope with energy wise but in the end I was fine. I feel that I have aged 20odd years at times. However I am still not in the acceptance stage – very few friends know of my illness and nobody at work has a clue (which when a flare up means I can’t type with my left hand causes issues!). I recently told a close friend of the battle I’ve had over the last few years and she shook her head in disbelief and said, “You think you know someone.”

That is the bare bones of the story but apologies if even that was too waffly! So anyway after reading through other posts on here I realise that I am very lucky at being more mobile than some and also at being able to hold down a full time job. But does anyone else feel totally drained of energy when they stop for a moment (I crash at weekends and in my evenings) and any advice they can give?

Finally has anyone been to any if the group meetups in their local area (mine would be a London one) and would you recommend them – what happens at them? I envisage if I went that I would be the youngest by about 30 years and hence very different issues having to deal with! And luckily I have a very dark sense of humour but I’m not sure listening to everyone moan about how awful their lives are would be that uplifting!! I am joking of course as it would be nice to talk to people who fully understand the illness I think I should quickly add but you know what I mean.

Thanks in advance! :)

Comments

  • KittkatKittkat Posts: 309
    edited 30. Nov -1, 00:00
    Hello and welcome
    I am Kat I am 24 and also have psoriasis arthritis and have had it for 3 years. I can relate to a lot of what you say!Has the humira improved your joints a lot?Also what do you work as?

    In terms of fatigue I am not sure what to say really I am feeling really awful at the moment! I am afraid I don't have any experience of meetups and I don't think I would like to go to a group unless people were around my own age. If you would like to chat send me a pm :)
    Kat x
    How am I gonna be an optimist about this?
  • BluesWalkBluesWalk Posts: 47
    edited 30. Nov -1, 00:00
    One peice of advice I could give is, take it slow, its not a race :) As for drinking and stuff, i could go into a big rant about how its just so bad... but just do what you feel comfortable in. Be comfortable and if anyone cant deal with it, well that is their problem.
  • edited 30. Nov -1, 00:00
    Thanks for the honest advice Blueswalk. Part of me knows that you're right but I don't think I've hit acceptance yet sadly!

    I'm trying though (the acceptance part) by starting to tell a few friends of my illness although I'm sure that like most people on here I'll then complain that 'they just don't get it' and won't understand the impact this has on my life and my future!
  • spots123spots123 Posts: 4
    edited 30. Nov -1, 00:00
    Hi All,

    Just joined the forum and everything on this thread sounds far to familiar. I'm 24 and have psoriatic arthritis. Was diagnosed at the age of four but have had a long period in remission before it came back last year.

    I think for me it's the fatigue that gets me the most and the thing that people who haven't experienced it really don't seem to understand that it's not just being a bit tired!

    I've been looking at the groups and googling to try and find one to go to but like you I was quite nervous about going to them and being the only younger person there.

    I'm in London too- Maybe there's a gap in the market to start one up?
  • beckie89beckie89 Posts: 46
    edited 30. Nov -1, 00:00
    Hi All,

    I've just come across this post, I'm also 24 and got diagnosed with psoriatic arthritis in November last year after a couple of years battling with my doctors!

    I started taking sulfasalazine about 4 weeks ago, along with naproxen and a steroid injection.

    I have to say the fatigue is getting to me recently, I constantly feel physically exhausted, and because of my age, I find not many people understand!

    It's nice to find some people of my own age, who know what I'm going through!

    Bex x
    <3 *Beckie* <3
  • edited 30. Nov -1, 00:00
    Hey Spots123 and Bex, glad it helps to recognise similar journeys with this tricky (I could use other descriptions) illness.

    It's weird though isn't it (and I'm not sure if either of you have got there yet) but after having been in agony and not sleeping due to the pain etc etc i have no pain anymore and get 8 hours sleep a night mostly because of my new drugs. Yet the fatigue is devastating. Sounds dramatic but it really is. I no longer socialise because of it - no drinks after work, no cinema visits, just straight home to the sofa. It's all relative as compared to some I'm lucky I can work but that is all I have in my life it feels at times! I'm pretty positive and upbeat and have come to accept it but now and again I wish I could have a week of normal energy and organise meeting friends for drinks after work, going to that gig I wanted. I could go on!

    I think at any age people would struggle to understand but it's just that we see most of our friends posting blogs or pictures about how amazing their lives are and what crazy adventures they go on. Personally I don't care for that but it's taken a while for me to get to that level! I always give myself an entire day of doing nothing by myself at the weekend - just watching sport or films or reading and listening to music. I actually really enjoy those days and find that by pacing myself and having a day doing nothing really helps me. Otherwise sometimes I actually can find the tiredness overwhelming and the thoughts of 'is this how I'll feel all the time from now on' far too scary. Acceptance acceptance acceptance. Far easier said than done though.

    Bex - good luck with the sulfasalazine, hope it works out for you.

    Spots123- the 'gap in the market' comment reminded me of dragons den and did make me chuckle! You could be right though!
  • beckie89beckie89 Posts: 46
    edited 30. Nov -1, 00:00
    Thanks exasperatedontaste :)

    I must admit, I'm really struggling at the moment! If I haven't got a banging headache and extreme tiredness, then I always feel sick :(

    It's affecting all aspects of my life, from work to relationships, let alone going out, I cant remember the last time I went to a nightclub lol!

    Bex x
    <3 *Beckie* <3
  • edited 30. Nov -1, 00:00
    Ah Beckie that's rubbish! Yeh headaches knock me or six a lot. And fatigue can be really tough. One of the best things I've found for dealing with it when really bad is to do something I really like for 10 minutes like listen to my favourite track on loud - always cheers me up which then gives me more energy. Positive energy is key (but can be difficult when really ill!).

    I may be having a biopsy to try and figure out why I'm so tired - they think my kidneys may be to blame which sucks. Pretty scared about it to be honest, apparently I'll be awake when they stick something into me to get a piece of my kidney to dissect. Sounds like a B movie horror film!

    Yep the hardest thing isn't accepting and having to deal with the illness yourself but how the other people on your life have to deal with and accept you with it also. Mighty hard. You'll lose certain friends on the way that's a given but you should take the view that you would lose touch with them anyway. Ha the thought of a nightclub seems like a distant memory these days. Luckily I feel like I did enough partying when young to feel okay about not being able to do it now so in lucky in that respect!

    Hope you start to feel a bit bette anyway.

    M
  • Cariad71Cariad71 Posts: 99
    edited 30. Nov -1, 00:00
    Hi everyone, just thought I'd introduce myself as I'm new to the forum in the last few days.

    Exasperatedontaste, I'm also too old for the 'young people' forum at 28 :oops: but same as you I'm not sure my worries are the same as everyone else's.

    Re the fatigue thing, I'm so glad to read that there are people like me! I too work full time (although off sick with this flare at the moment) in a very busy job with a long commute, and really struggle to have much of a life outside work. I always though I was just a bit pathetic or had less stamina than my friends! I've never really put it down to the arthritis, especially as mines been well controlled most of the time but maybe I can actually blame that!

    Best of luck with your kidney biopsy, I don't envy you there :shock:

    Nice to meet you all anyway xx
  • ChloshmoChloshmo Posts: 1
    edited 30. Nov -1, 00:00
    Hey everyone, also new here, so - hello!

    24, live in London, only diagnosed with psoriatic arthritis last November. Started methotrexate in December along with copious amounts of tramadol, naproxen, omeprazole and folic acid - which really is a delight. Had to move back home and go on sick leave from work as I was really struggling to even walk in the beginning, so can totally relate to how everyone feels. I didn't have a clue you could get arthritis under the age of about 60, let alone from psoriasis!

    I had a couple of good weeks after a few cortisone injections but now back to feeling awful, my legs and hands being the bain of my life. I'm on 10 methotrexate a week which makes me feel super sick. And totally know what everyone's saying about the exhaustion, hits you like a bus, especially when you're taking tramadol!

    Would be great to talk to some of you, and really sorry for my long moan ha I'm probably really not helping! X
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello Chloshmo, I'm not a young person any more but I too have PsA and know all too well how miserable it can be at times. If you would like to speak to people then please post again on the Living with Arthritis board because more people call in on that one, and you may well find some interesting and relevant threads on there. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
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