I think a lot of us suffer from debilitating fatigue to the degree where you can no longer hold a conversation and have even sometimes found myself sitting on the floor without realising.
I just wondered what you had all tried to overcome this and what benefit you got from it.
Really looking foreward to your replies.
thanks in advance
Nic
Hi Nic - my advice is rest when you need to for as long as you need to or are able. Rest is one the best ways of managing this dreadful disease, while continuing to push yourself when in flare will only bring more problems. Listen to your body!
Hello Nic - Tigerlily is completely right, but I realise this is not so easy to do when you have a family to look after. My lupus didn't onset until my boys were well into their teens - and it was a shock for them that their 'supermum' was suddenly so debilitated. But with younger children it must be much harder - the only thing I can suggest is to develop a string of 'quiet' or more restful activties - like reading with them, or siting at the table doing drawing or some other sedentary thing, when you can't actually get to bed for a proper lie down. Also - don't sweat the small stuff - an immaculate house doesn't matter, and the occasional 'instant' meal won't hurt!
Ideally - it would be good if someone could take the children for a little while each week so that you can rest - but I realise that this isn't necessarily going to be possible.
Sorry I can't be more help. Good luck with it all - I really sympathise.
Thankfully my children are now teenagers so are able to fend for themselves but there is still the mental stress and worry that having teenage children brings.
I know its daft but i just get so frustrated that I am being lazy. some days my mind wants to do so much more but my body won't let me.
As for an immaculate house - whats one of those lol!!!!
i think what frustrates me more is when i'm on 30mg of steroids I feel like a human being and its amazing. but as we all know our rheumy's don't like us to be on steroids for too long so as soon as I get down to 15mg I hit rock bottom again and life is so just so debilitating again.
anyway I know I just need to be positive and get on with things and to keep telling myself it could be much worse.
thank you for your support 
Hi Nic what has worked well for me is a herb called ashwagandha in capsule form. It increases my stamina, daily gives me more energy and I notice the drop when I stop taking it. I need to take quite a high dose of it but its totally worth it for me. I realize not everyone wants to think about herbs but visiting a well experienced herbalist may help.
This particular herb is also called withania and is well know in asia as a tonic.
With sle sometimes I find resting sometimes helpful, sometimes not. I schedule in reading time on couch, daily walks,[ brief when not so good,] yoga and chi gong for adding energy into my body. I try to eat the most nutritious variety of food including the anti-imflamation diet.
It all helps. Each thing maybe 5-20% but it all adds up.!!
Hi, Nic, where do your purchase the herb from. Is it mainly called ashwagandha or withania? Thanks.
Hi
I don't know if you are taking predisolone at the moment. I went to my rheumy after months of aches and pains and the worst tiredness I have ever had. He has put me on 10mg of predisolone daily until my next appointment. I cannot believe the difference after just over a week of taking them. Yesterday I washed my net curtains ( not been done for a very long time) and have been doing my housework and not having to go to bed for a rest afterwards. I don't know how long I will feel as good as this but at the moment I am a very happy person. I don't agree with taking steroids unless you really have to, but in my case they have helped me to feel normal again.
Tiredmum, ask doc to check your iron levels, maybe you are anemic. Even mild anemia will cause severe tiredness.
Can any family or friends help with housework and childcare?
Personally I pay a private home help 2 or 3 hours each week to help me with cooking, vacumning the carpets and occasional shopping trips.
When cooking I make extra quantity and freeze portions so I only have to cook a few days each week.
I do a bulk online shop a couple of times a month.
I also sleep better now since I got a new medication.
Some nights I need about 10 hours sleep. I also put earplugs in when I go to bed to help me sleep through. People with Lupus need a lot more sleep.
afternoon herb,
I have always been borderline anaemic, but the docs don't seem to worry about it. my last feretin test was 8, so i got a months worth of iron tablets.
i am lucky enough to have a carer for a few hour a week and to be honest i couldn't manage without her..
i guess really i am just frustrated that I can't manage more and from time to time it makes me miserable and now is one of those times.
i am sure i will snap out of it.
thank you for your thoughts
My children are adults, no husband, I live with my adult son and when fatigue gets too much I'm able to just crash on my bed or settee as my times my own and rest. Nothing else seems to work....
Hi - Tired Mum ....like Chris, I don't have the care of young children - so can fit in cat naps when the fatigue gets too much. We are all different - but for me, short sleeps are more beneficial than long ones.
Lots of good advice above, and I'm glad you have a good carer. It was suggested on here some weeks ago that Turmeric capsules are very good for lifting the mood (fatigue can really get us down!) I've been taking them for about two months now, and together with B12, Omega 3 and a lot less carbo's (+ more fruit and veg) - have noticed the difference.
Dark choc is a good source of iron....and a lot more yummy than spinach!
Be kind to yourself.......
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