Fatigue Say it aint so!

I had been living in hope that at some point I would be freed from my prison of fatigue

Even after my mum told me that there is nothing that can be done about it.

During a recent visit with my Rhumey I asked if there was any tips or advise she could offer

And she confirmed what my mother said.

No seriously doc I’m willing to eat, drink do, anything!

There must be something that can help relive the constant tiredness so that I can have some kind of social life

How do you guys cope?

10 Replies

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  • We published this article late last year which compiles some tips on managing fatigue. It might be worth a look;

    healthunlocked.com/lupusuk/...

  • Hi Wotshernameagain

    Like the name - with Lupus fog it is really relevant.

    There are times when the fatigue gets better. Honest! Difficulty is you don't know when.

    So make plans and do what you can. Explain to friends how you feel. That you want to go out but may have to call it off at the last minute. Rest up as much as you can beforehand, drink plenty of water and watch if you drink alcohol as it probably won't work with your meds. You don't need to be the life and soul of the party if you don't feel like it, but can still enjoy being with friends.

    Same with a day out. You can still do it, but it does take managing. You have to work out which makes you feel better - doing something. even if it is a bit limited, or not doing it at all.

    But it all comes back to how you feel at the time. If you can't even crack the eyelids open as it is too much effort, listen to some nice music, get someone to spray some perfume around, open a window so you can hear the birds.

    And know that a lot of people out there are wishing you well!

    Margaret

  • Hi,

    We all had been there, but it does get better. There will be times when you don't feel so tired and when you do, you learn to manage (instead of wasting energy fighting it).

    This "theory" really helped me get a new outlook: butyoudontlooksick.com/wpre...

  • I suffered fatigue for some years with it becoming worse over the past two years - so much so that I was losing have my life in bed! To my surprise the consultant found my Vit D level was very low, 22! I have been on Vit D tablets now for just over 10 mths and am feeling much better. Since being diagnosed with this I have read my articles on low Vit D and extreme fatigue. So get your Vit D checked! All the best!

  • Totally agree, I had exactly the same symptoms was prescribed 20,000 unit of Colcalciferol once a week and i now take it once a fortnight. What a difference, still not perfect but please try. All the best xxxx

  • Box sets a day with desperate housewives does the trick for me.

  • They all work in there own way. What do you do when you make arrangements you can't call off at the last minute.

    What if you have promised to do some babysitting and the day you're due to babysit you wake up and can't move even your eyelids or your going on hols and the week before you go you're so tired you can't even think about packing your clothes let alone going to the shops to buy new things.

    I've had lupus a good many years and over the years I've rearrange nights out with friends, do only things that really need to be done on a bad day.

    What I can't deal with is letting people that I love down. I've been well for three months I thought I was "cured". I've had stress to beat the band, been totally exhausted, dealt with the sun and still been ok. Then yesterday when everything in my life is good I hit a brick wall.

    Tomorrow I'm taking my two grandchildren aged 2 and 3 months for the weekend. What am I to do well I'll do what I always do I'll carry on and when I'm better I'll forget all about how horrible I feel to night.

  • I am suffering with this too.. Just as I am finally working with my conditions instead of fighting them eg resting putting my needs first , realxation.... And wow it feels good . Wake up a couple of days and thought YES!! I am getting SOME Control. Then just when things seem to be going good BANG the fatigue takes hold and just getting out of bed is exhausting. I feel like I can't win. There is no easy answer or quick fix. It really gets me down . Not that I am saying I am happy to hear that others are suffering but its nice to I am not alone. It's nice to know its not me doing something wrong ...it's just lupus being mean and not playing fair .... I am told negativity makes symptoms worse.... But sometimes its impossible to stay positive

  • My workplace has this strange rule.

    If you are feeling unwell they would rather you come in and get sent home then call in sick!

    Um what happens when you don't have the energy to get out of the bed, wash yourself, dress your self than make that trek to the office only to go back home.

    I am trying get the courage to come in in my PJ's

  • Oh yeah a few nights ago i had this rush of energy and i decided to crazy and wait for it.....

    I did the dishes and some ironing!! crazy times

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