It's driving me insane, wake up PAIN, sit down PAIN, lay down PAIN!!!!!!!!!!!!! Oh my God when will this stop??? I'm feeling really aggressive and think that i'm going to crack, can't handle another course of steroids they turn me into a looney tune! My feet and ankles hurt constantly. Do you ever get the feeling when you wake up that you wish you could hibernate? I'm sooooo fed up with feeling that way, every second, minute, hour. I have only had this for 1 year so I salute those of you who keep going.
So, so, sorry to be an old bag - just made a coffee, take my co-codamol and double up on the prozac today!! That should do it - life what a pain in the harris it is or rather LUPUS!!
Just have to keep relying on that sense of humour - it always wins in the end.
Have a nice day & bless you for reading my morning moan xxx
Written by
beckybooboo
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Hi Becky - we all now how you feel, so no worries about venting.
Things that help me are things that help me to relax, even though sometimes it's counter-intuitive (and sometimes I feel so crappy I can't follow my own advice). So when it's all really bad - I try to take some painkillers and go swimming (I guarantee this works), even though the effort of getting there and getting undressed feels as though it will kill you. Or do something you love that helps take your mind off it (in my case some macro-photography, which has me concentrating so hard I don't notice that I'm not hurting until I stop). A hot shower, a hot water bottle, a good book or radio 4 (it takes all sorts!) - all things that help when pain threatens to overwhelm me.
You need to find the things that work for you - and when all else fails, it's ok to cry and feel sorry for yourself. But you can't live like that forever so you have to find a way through.... and I know you will.
Someone told me when I was first ill, years ago, that you could get used to pain. I thought they were bonkers, but it is true - you can learn to live with it, and that helps, too.
Rank away, get it off your chest, does,'t do any good bottling things up inside. I find that when l am at my worst, l take myself off to my bedroom and sit up in bed with my electric blanket on - that eases the pain and have my laptop on or read a good book, saves on having to put the heating on in the house so saves money too You won't always feel like this, you will learn to live with it and as my wise father always used to say "There is always somebody out there worse off than us, that would change places with us " . Always try and look for the little positives in your life- no matter how small they are, there is always something to be thankful for. Take care and keep your chin up, we are true survivors.
Oh I so understand how you're feeling right now because I am having a really nasty flare. Spent most of yesterday crying both with pain and wishing my mum was still around to listen to my moaning because she always made me feel better. Oops better stop before I start again!
Anyway, woke up this morning still in terrible pain but the sun is shining a little and maybe I feel better for letting it all out yesterday. I just try and take the bad days along with the good and just do whatever I feel like. If I wanna cry, I'll cry. If I wanna moan, I'll moan because I think its a release. My language was bluer than a smurf yesterday
Its great this website to just come on here moan, vent, cry, spread your anger etc its what us as lupies suffer with after all and just venting it out to others who suffer like you means the most because you get advice and help and just a chat even that helps you get through the day because you know your not alone with the pain.
Sadly the pain is another problem with us lupies when i get like this i just rest, i have my electric blanket on so the heat can get on me which helps abit, take some painkillers have a hot chocolate. Also if you can run a hot bath and put some bath salts in i use radox bath salts for muscles that helps, the hot bath takes the weight of my body feeling weightless and less painful. Overall theres no quick way to get rid of the pain but its important to make yourself abit comfy at least.
Anyway i could go on forever once i start hope you get rid of the pain quickly
Oh, you poor thing, how awful you must be feeling. Pain seems never ending and it is like it has many thresholds, the moment you get used to one, another comes and hits you. We cannot think while we are in pain, let alone live a normal day to day. I hope all gets settled soon.
Hi Beck never been on this site before but just had to reply to you re feet and ankles.. It drives me insane the pain and getting worse .like u I can get incredibly annoyed by it all. But what can we do
Keep a sense of humour. It seems like the only thing in my body I have control of and can't take from me. ! Only recently been diagnosed had very bad discoid lupus . I looked awful all up my arms and face. Now its having a go at my kidneys apparently. So in for a biopsy Monday. Can't say I'm thrilled at the prospect. .. but hey Ho it won't bloody take my humour too. Good luck to you all my love and support to you all. X.
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You won't always feel like this, you will learn to live with it and as my wise father always used to say "There is always somebody out there worse off than us, that would change places with us " . Always try and look for the little positives in your life- no matter how small they are, there is always something to be thankful for. Take care and keep your chin up, we are true survivors. 
Very bad flare up. Need relief. Please advise? Going mad with pain.
Desperately need advice - stuck in a rut with CNS Lupus
fed up with constant pain
I Just really need a safe place to vent
