Fatigue...fatigue...fatigue: I know you all know... - LUPUS UK


29,880 members26,446 posts


April2018 profile image
15 Replies

I know you all know how it is to live with this s...t 24/7. I feel guilty that I am even complaining about this. It’s not getting any better. Even Seeing people around doing the normal activities tires me. Up until a few years ago , I was one of those people tirelessly juggling work, home and childcare on my own. I feel very low and don’t know what to do sometimes. I hope at least some of you is having one of those precious days with some energy...❤️

15 Replies
Insomniacette profile image

Oh April2018 I'm sorry to hear this. When I have my fatigue I just listen to my body and do my best to give it as much rest as I can within the parameters of work and responsibilities I can't ignore. It sucks when you are in the pit of fatigue. If you can don't blame yourself or feel guilty. It's nothing you are doing wrong. Give yourself the time you need to recover and rest whenever you can. Resting is work too! It's essential. It will eventually get better and if it doesn't then it's time to head to the doctor for a bit of extra help. xxx

PMRpro profile image

Have you ever though of asking for counselling? Loss of our old lives is a form of bereavement and talking about it to the right person can help adjust and accept it a bit better.

Have you seen the links in this post? They may help - and even conjure up a wry smile ...


It's on the lupus forum too somewhere but this is the link I have to hand.

April2018 profile image
April2018 in reply to PMRpro

Thank you PMRpro! I totally agree that there is grief involved in the loss of our old lives. It is true that I am grieving. I was diagnosed with Lupus a few years ago while I was grieving and processing a significant and traumatic loss in my life. I’ve always thought lupus was my body’s response to the emotional pain I was going through. I had counselling before and some more later. I found it useful. Thank you.

svfarmer profile image

Hi April I think for me one of the worst symptoms is the fatigue and it’s the same for many of us on here- it’s taken along while for me to accept this and now I pace myself, I do any chores in the morning then come the afternoons I’m so exhausted I can’t do anything physical and sit with my feet up with the dogs on my lap and I’m ok with this now I’ve accepted this is how it’s got to be, I just to get very frustrated with myself as I was so active before my lupus, all I can advice is when your feeling exhausted you must rest up and take it easy , I know easier said than done . Xxx

Spanielmadlady profile image
Spanielmadlady in reply to svfarmer

Hi my routine is very similar to SVs.i do in a morning what I can and then nap. At the moment I can't get past 2pm 😴.that gives me a boost for the rest of the day. The beauty of catch up tv means I go to bed when I cannot longer keep my eyes open. It took some accepting and adjusting but I realised I had to let my body dictate.ive had some energy the last couple of days and been naughty helping my son load the skip with render coming off the back walls...I'm paying for it mind...my hands are swollen and sore and I've got no spoons left in my cutlery draw.the skip goes today though job done .now I need to rest up as I'm hoping to meet my daughter son in law and grandchildren next week for the first time since aug last year and I know the drive will wipe me out for a few days afterwards.I now get satisfaction out of doing a little bit of something then not being able to do anything at all and that helps me feel less guilty . Xxx

Krazykat26 profile image

Hi April 🤗I woke up this morning n felt quite energised..I was alert..bright as a button..thought hey today's is a good day!! Then when I went to get out of bed..😖😣😩

I totally understand where you're coming from coz today is 'one of those days' so I'll join u if u don't mind..shove over n we'll sit n have a moan 🤗🤗

The best way I have found to describe fatigue or energy impairment as it has been referred to is it's like being trapped in a cobweb. I know spiders r pretty gruesome but cobwebs r beautiful in the garden in autumn. So I like it to that feeling..I feel like I've flown into a cobweb n I'm stuck!! The more I struggle the more tangled up I will get..so much so that I might well end up getting myself in more of a pickle!!

I've had to learn to say no..it's not easy but it's the only way for me..I've narrowed down friends to a few close friends only. I'm lucky in that my children are grown now so I can take it easy when I have to.

There is a certain amount of grieving that has to be done but please be kind to yourself..don't feel guilty about posting your feelings here coz lady we know what u mean n we understand!!

Through the grief process u will eventually come to a place of acceptance n when u get there u will discover a new u..n a new way of enjoying life ...different yes but it can be done. Gentle 🤗🤗🤗🤗 n please try not to stress coz stress will just make matters worse. 🌈😽😽Xx

Tiggywoos profile image
Tiggywoos in reply to Krazykat26

That’s such a beautifully written message you made me cry 😿 in a good way though . Such an amazing description . Big healing hugs xxxxx

Krazykat26 profile image
Krazykat26 in reply to Tiggywoos

Thanks Tiggy 🤗🌈😽😽xx

April2018 profile image

Thank you so much for all your beautiful words. They meant a lot. It takes some energy to reply as well and I know how precious your spoons are too. Thank you again xx

miccika1 profile image

I used to have only one day a month when i had energy. Now im at almost 70 percent of days having energy. I suggest you keep experimenting with different treatments and dosages until you run out of options. It could take some time as usually meds take at least 4 month to evaluate but once ypu find a combination that help you it will all be worth it.

April2018 profile image
April2018 in reply to miccika1

Thank you ! What medication are you on? I am only taking quinoric-hydroxychloroquine once a day. My main symptoms are extreme fatigue, joints and muscle pain. Feel sensitive to cold and sun, recently noticed some mild swelling in my ancles. My recent blood tests seemed better than before after being on hydrox... for one year but didn’t seem to make any difference in how I feel generally. Thank you for your time in advance. Xx

miccika1 profile image
miccika1 in reply to April2018

Hm thats usually what you start with but if it doesnt solve your symptoms usually rheumatologists prescribe heavier drugs. Hydroxy is very very mild. Im currently on Hydroxy, prednisone (low dose, and when in flare i take higher dose and taper for 10 days), myfortic, cymbalta. I tried benlysta, methotrexate and a few other ones...

puffyface profile image

Its so hard to explain what it feels like...I’m sure my family just think I’m lazy! I’ve had to come and lie down because if I don’t get into bed, I’ll have to lie of the floor. It’s the first day of half term, the sun is shining and we’re supposed to be going out for dinner this evening. I’m not going to be able to go unless I get some zzzzz. Does anyone get an upset tummy when they hit the fatigue wall? Sending gentle hugs to all x

Paprika60 profile image

Hi, I have come to think all this fatigue comes from the accumulation of inflammation and not just my condition. I have had it now almost twenty years. I think it takes really long time and huge amount of patience to slowly recover from the fatigue. I am too suffering daily and I keep telling my mind/body that I am doing well and slowly getting energy bit by bit... I too take Hydroxy but have only last year changed to Zentiva brand after being on Bristol one for 7 years (400mg daily). I think this one is much better. I had developed dyspepsia from the Bristol brand and now it is easier and I am also taking organic aloe vera juice first thing in the morning which has helped. I have also reduced it down to 300mg. I used to say to my doctor that Hydroxy made me very weak and tired with poor balance in walking and he always said it was my condition and I am now thinking it was half and half. All the best to you and be kind and very gentle to yourself. The important thing is not to get upset when you need to rest even if it means every half an hour. Just rest a bit and then you keep going. x

April2018 profile image
April2018 in reply to Paprika60

Thank you. Xx

You may also like...