Fatigue is killing me

[Harry19]

Please please any advice on addressing extreme fatigue . I’m sleeping for about 16 hrs a day and I’m still don’t feel rested . Please help I need to get past this

[Oshgosh]

You have my sympathy. I have lupus,the fatigue is dreadful.

I try t9 get up about 8 am.

Eat breakfast,meds etc,then and aim to do a bit of housework- wash up,vac.

If I feel tired, I makeadrink and sit down for a bit.

I try to get out for aSHORT walk or shopping ,gym etc.

Ligh lunch,then go to lie down. Sometimes I read a book,then. I fall asleep.

Set timer on phone to get me up.really hard to get up at his point.

Then cook tea,try to stay up until 11pm.

It’s not much fun,but it m just trying to keep going.

I’m waiting to start on. Myclophenate,so hope it helps me.

There is some information regarding pacing yourself self on the lupus UK website.

Hope this helps

[Paul_Howard Partner LUPUS UK]

Hi Harry19 ,

I'm sorry to hear that you are struggling with fatigue. Have you told your consultant or specialist nurse about this?

We have an article on our website which includes some information and advice about fatigue which may be of interest - lupusuk.org.uk/managing-fat...

[overnighthearingloss]

If on a regular good day things are manageable, I would say your body is tackling something else atm. Either a virus or bacterial infection of some sort or additional stress from somewhere.

[Kath1]

I think you need to see your consultant about this and see what they can do to help. I suffer from fatigue (it is horrible) but my meds (methotrexate) were increased and touch wood I haven't had any fatigue for a month now. My GP is never very helpful so I get help from rheumatology and they are amazing, so supportive. In the meantime my advice would be to rest when you can, try to eat well and if you can, take a little gentle walk in some woods or local park. A bit of fresh air and nature might brighten your day, just make sure you wrap up warm. I hope things improve for you soon.

[Angie245]

I’m new to all of this and extreme fatigue gets to me to!

My best advice is drag yourself up no matter how hard it is. I found the more I laid in bed the worse I felt. I always get up at 7am no matter what (sometimes 8am on a weekend to be fair). When I start to fall asleep in the afternoon I again try to move more. Short walk if I can or gym session. It’s really hard because it’s catch 22 the more you do the more fatigued you become. But I have found the less I do the greater the fatigue, joint and muscle pain.

I hope that helps. xxx

[tiredmum]

I really feel for you. I too suffer from extreme fatigue. I wake up at 6 when my partner gets up, but I am in too much pain and too tired then so I force myself out of bed at 8.30 when my PA comes.

At 10 I go to the shop in my wheelchair as I still only have the energy to potter about at home. Getting out does me the world of good, blows away the cobwebs and refreshes me. I put the shopping away and wash up the breakfast things. By this time I am exhausted again so sit down until Lunchtime.

I make my partner’s lunch. I tidy up and sit down again. During the afternoon I prepare the dinner later cooking it and helping with the washing up.

After tea we go for a walk round the block, a quick shower and then I am back in bed again for 7.30.

When my partner is home of a weekend we go for a walk in the afternoon. I push my wheelchair until I can manage no more.

I can’t even manage to wash and dry my hair any more. I use dry shampoo and ask my hairdresser to wash my hair for me.

Some days I don’t have the energy to cook a meal or have a shower. I do make sure that I get out of bed every morning even if it is just to sit on the settee in my tracksuit .

My energy levels vary every day, some days I need help to the toilet others I can walk round the block with support.

Mornings and evenings are always awful.

Being on mycophenolate mofetil has helped a bit, but I do wish for my families sake I could be more independent and manage a bit extra.

Good luck xx

[Hidden]

Harry I’m sorry you have this fatigue. I do too although my main autoimmune disease is Sjögren’s - but I think the fatigue is same with all these diseases.

This link helps me to isolate the various types of fatigue and manage them a little better. Hope it’s a bit useful to you too: info.sjogrens.org/conquerin...

[Salzer in reply to Hidden]

This is such a great article Twitchy. Thanks for posting it. S

[Hidden in reply to Salzer]

Thanks - always delighted to be useful Salzer. 😊

[PMRpro]

Sounds like what I and many of my friends have been doing for the last umpteen years. It seems to be acceptable and expected when women do it.

[Hamptons]

I have been using acupuncture which has transformed my energy levels. Gone from permanent exhausted to energised.

[Harry19 in reply to Hamptons]

Thank you for this I’m still awaiting review by consultant so in the mean time this may be an option. Do you mind me asking how often you have it ?

[Hamptons]

I started. Off weekly but after 3 months reduced to fortnightly. Know the time is running down. Has been an incredible change.

[Harry19]

This is defiantly something I’ll be looking into

Thank you