I'm fed up! Is it usual to feel er.......er.......crap! Sorry can't think of another word right now. Seriously I ache from top to
toe as though I have been on massive aerobics exercise, my necks creaking, my back aches I got heavy legs ad my arms feel like I've been carrying a heavy load! Anyone else like this?
Yep Talula every day that is how I feel, had sle for nearly 20 years and it won't go a sleep, so that is how I feel . I have learnt to live with the pain and tiredness. But have days were I feel like not waking up. But have a lovely wife and two gorgeous boys to keep me going. x
O thank you for that, quite reassuring in a way. I do worry about being a pain in the backside to my family, I can't walk as much as I used to. And isn't it so annoying when you feel so rotten but look ok?? Thank you again, regards to your wife and take care. I suppose we just have to make the very most of each day good or bad!
Hello and welcome to' LUPUS' - yes feeling like crap is a VERY big part of the illness I'm afraid!!! Are you on any medication?? I felt like crap-everyday- for about 7 years before finally being diagnosed with SLE-at the end it was taking me 1 and half hours after getting up and taking painkillers, before I could attempt to do anything-just used to sit and think about what I had to do and pray that I could do it!! But in Dec I was put on Steroids-felt better straight away-and in Feb after diagnosis I was started on Methotrexate-am now starting to lower dose of Steroids and up the Methotrexate-and on most days I actually feel 'NORMAL'!! and its great! I do still have crap days-especially if I have overdone it, and I still get very tired,but on the whole, when I look back, I would say I am 300% better than I was before I started this course of meds....so if you are struggling go back to your G.P/Consultant and tell them. Maybe the meds you are on do not suit you? Don't give up-keep on at them-you are not going mad-you have a illness that you cannot help-and it is not' in your head'.Good Luck and take care xxx
Yes, If you are 'lucky' you will look crap as well. So at least people will be able to see you are unwell.
Sometimes though I get bouts of incredible fatigue. When this hits I can sleep all day and still be tired. I dont always look particularly ill at that time. To try to get others to understand this can be really difficult.
It usually occurs when there is a flare or I am fighting an infection of some sort. But can also strike the day after doing something simple like a bit of light shopping.
Thank you, the fatigue thing is awful isn't it, I have days when I just want to lay down and sleep!
Hi Talula again it is the worst thing about LUPUS is you look so good but feel like anybody fit could imagine. I've only just joined this site, but I think the best thing to do is find a LUPUS group meeting near you and go along and maybe take your partner, cos it must be hard for our partners to understand. But talking to people who understand, I think would help. loe to you and yours. xx
I was passed a link about Spoons theory butyoudontlooksick.com/wpre... spoon theory/ found she explained how we Lupies fwwl so well, and how we can explain it to our friens and family. Its a long article, but well worth reading.
Thank you for that I shall look it up.
Nope craps a good word !
David Tampa Florida
Well this may not apply to others but I am on warfain as well. Just had a call from my wafarin nurse. My levels have shot up.
I have noticed that when my levels have been high in the past I have also felt really tired. My lupus consultant said there was no link. But............
I will need to be aware over the next few days to see if there is any difference as my levels stabilise. Ruddy meds. cant live with them, cant live without them.
Hi, yes this sounds perfectly normal. I can lie in until lunchtime (on a rare occasion when my husband isn't working and takes the kiddies out) and still feel like I need to go back to bed. I feel like it most days. Given the opportunity I'd be asleep. And I ache like mad despite masses of pain killers. I sometimes get a weird feeling like I'm bruised on my muscles and it hurts even to touch my skin too. I find that trying to keep as active as possible (not much choice with 2 little children lol) helps sometimes but don't overdo it. Take care x
O I know that bruised muscle feeling, so strange.i also have fibromyalgia. I do keep active at home my partner says I try to be super woman! I love to swim but with the bad weather and the huge hill at the top of my road before I go anywhere, well it kind of puts me off. My back and hips hurt so much I can't get up the hill without having to stop!
Well it's been good to have a moan, thank you and thank you for your help. I've not really done much on here but I will in future the response was. Very encouraging.
Keep well x
Just a suggestion but worth Rheum checking for Aneamia and you Vitamin D levels. Low Vit D can cause awful pain and fatigue. I know as I am been treated for it just now. Also have you ever been diagnosed with Fibromyalgia? What you are describing sounds a bit like it and would be worth gwtting checked as it requires different medication which can really help. I have been treated for all 3 of these things which cause pain and fatigue and it really helps to see what is actually lupus and what isnt. I wish you luck and to feel better xx
Yes I have fibromyalgia though I have never been given medication, the consultant at st Thomas's said I just have to live with it! Very tlc not! What do. You take?
I will get my vitamin D checked, I have my bloods done every three months and they have been coming back normal!
Thank you for your thoughts keep well x
Hi Talula. As everyone has said I'm afraid it's par for the course to feel like this. Just hope that at some point your meds give you some relief. Good luck and long-distance hug 
Thank you, not every day is a bad one so I should be glad about that. I have to say I have enjoyed all the input from so many, it's a nice feeling to know we are not alone!
I liked the long distance hug too thanks!
I wish I hadnt replied to this thread. Its brought me bad luck
I have put my back out.
As I mentioned earlier its come after a spell of severe fatigue. At the moment I have to get up extremely slowly and carefully holding onto something or with sticks. And my shoulders are out of alignment with my hips.
Just got to be careful I dont stress the back muscles any more and that it all returns to normal quickly.
I love this condition
I'm afraid so 
Is this usual for others treatment from gp without seeing you
Hi, I have SLE and have tried all the usually treatments with limited effects ( only the side effects really)
When you have a flare up what are the two things that bother you most usually?
Positive covid test today
