Fatigue

please can anyone tell me how they cope with the fatigue i get tired like any normal person but when i get lupus tired its very different. For me i feel so tired that no matter how many hours i sleep i wake up like i havent slept at all and could lay there all day.

i dont get that awful exhaustion every day (thank god) but when i do i also ache badly too,which leaves me feeling like ive been run over by a bus.

my fatigue can last for days on end and cause me to be grumpy and thats when i feel like lupus has taken control again and because of this horrible tiredness i have today i feel very down and tearful i hate feeling sorry for myself but today i just do.

i always wonder when i have those kind of days if i have done too much which has caused my fatigue and aches, but i believe that sometimes we just ache no matter what we do even by doing just a simple task.

having a tough day!

debs xxx

26 Replies

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  • Hello debs,

    I am having a tough day too and am mrs grumpy when I am like this. What you have written is as though I wrote it. I was wondering also how everyone copes. I am not only grumpy, tearful but also feel very frustrated by it all. I cannot get things done. I have tried to force myself through it and do things but feel like I am going to collapse. Sometimes I think I may have done too much but overall I have decided it just happens. I am sure everyone is different. I have had a fuzzy headache with it all today. Like you it is not everyday and I can have days with full on energy. Lets hope tomorrow is a better day-you are not alone!

    Hugs xxx

  • Hello pinky and loopy-lou... glad to hear that I'm not alone!

    I've had a horrible week, feeling so grumpy, exhausted ...and angry too! It's just so awful when you feel like the exhaustion is so relentless and it stops you getting on with the things you want to do!! Yes I have good days, but they are out-weighed by the grumpy exhaustion days at the mo. Thank goodness my family are helpful and sympathetic! My teenage twin boys are really lovely at the moment (how did that happen?!!) and my husband just cleaned the house. All I managed to do today was pot up a few seedlings in the garden (taking care to dodge the sunshine) but gardening keeps me sane! hurray.

    The ways I coped with it this week was to pace myself (I'm self employed and work at home) so I can work for an hour, then rest for an hour. I've read a book when brain fog allowed, and listened to the radio. I've stared into space a lot too.

    It's frustrating when you wake up and just feel exhausted before you've even got out of bed... I find it's like I haven't slept at all ...and I've been beaten up in my sleep too!!

    I've stopped trying to work out whether I could have prevented the exhaustion by 'doing too much'.. I agree with you that I think it's nothing we could have done, it's just the nature of this annoying disease.

    sending love x

  • hello dyrad

    thankyou for your reply i feel better knowing that im not alone suffering but to be honest i knew that anyway its just sometimes makes me feel better to rant and moan on this site.

    i agree with you about gardening as i love it too,but yesterday i decided to go into garden and try and enjoy it but alas i coundnt do much due to fatigue and pains and yes even more disappointing is that i have woke up this morning with the dreaded face rash just red and swollen and very sore i did put on plenty of sun cream but no hat (so i will have to get one now)but it still came up even with high factor cream, its so frustrating and made me feel even more grumpy as i love the outdoors.

    How do you cope in the sun? do you need a hat or can you get away with just cream?

    debs

    xx

  • Yes I am very photosensitive too. I just bought a factor 50 sun hat from a website that specialises in this. here's the link:

    proteksol.co.uk/UVprotectio...

    I usually can't get away with being outdoors for more than 2 hours in sunny weather (that's with a spf 50 sunhat and with spf 30 cream) without getting a red face and the inevitable pain. So I limit my outdoors time to an hour and half and try to restrict going out to early morning and late afternoon/evening. It's very frustrating!! I love being outdoors! It makes me grumpy to be inside on a beautiful day like today!

  • Hi Debs, unfortunately I have never come across anyone who has been able to give a remedy for fatigue. I have the same symptoms as you all...what frustrates me is when you tell your Rheumy or Dr they just dismiss it as if it does not exist, or people ask what it feels like...I say, think back to your worst hangover and imagine having that everyday :)

  • hello gertie

    i totally agree!!!

  • I have had Lupus for over 20 years and I can totally understand how all of you feel.It's not a "normal" tiredness that everyone feels but a much more debilitating exhausting feeling.I feel I could just blink and fall asleep some days!I still get frustrated when I wake up from a great night's sleep and feel absolutely dreadful.You can't explain to a doctor or consultant how it feels.I have read it's something to do with the brain during sleep.In the past I've fought it and made myself do all sorts of daily tasks but it made me feel ill for days.The only thing you can do is to "give in" to it.....listen to your body and rest.Give in to the cat naps and sleep if you need to.My best wishes to you all....and just put your feet up.

  • I split my tiredness into tired n lupus tired too, my husband gets it n shouts at me a lot to lie down, I'm stubborn but sometimes it beats me n I go to bed. Firmly believe nothing helps/hinders the lupus tired just needs to run its course. I'm hovering in between just now, try to do a bit then sit down, but still work full time so it's difficult.

    Hope today is a better day for you

    Xx

  • hi alison

    i feel better in myself today not so achy but still have the fatigue,i find that sitting doing nothing makes me worse and very drowsey so i tend to be stubborn as well and try to ignore it and carry on as best as i can,on those tired days i do try to pace myself though.

    i gave up work last xmas as i worked as a TA in primary school and needed lots of energy which i could not give so now i go in on my good days to volenteer and help so theres no pressure if i don t fell well.

    (miss the money though)

    have a nice day

    debs

  • Hi Debs, so sorry to hear you feel so dire, my daughter Ellie knows exactly how you feel, she is 15...exams start tomorrow & she`s panicking even more than usual & trying to work out when she`s due a `bad day` ! impossible we know. She smiled knowingly at the comment about being a `different tired` You aren`t alone ! xx

  • hello ellie

    good luck with exams for tomorrow my son was in your shoes this time last year and he found it all very stressful and he doesn t have lupus.

    try not to worry too hard

    debs xx

  • Hello ellie

    I know just how she feels as I have lupas and I am in the middle of my GCSE's at the moment I am 16 and I know it's tough as there is days I can come home from school and go straight to bed and wake the next day just as tired as when I went to sleep

  • Hi Debs and everyone else above. I know what you all mean, you cant explain the fatigue / tiredness to people who dont have Lupus, but on here we all know what we mean, I spent 15 months really trying to fight all of it, but ended up with 4 weeks of work, only went back last week, managed first day till 3.30, then 2 days till 12.30 then 3.30, Just felt as if someone had pulled a plug out and any energy was just drained away. I to love being outside and gardening, cut the grass yesterday, had made up my mind that I was going to do it, but the body decided I had done far to much even though the mind differs on that opinion, it also caused a vicious flare up in my left elbow, which till now has been flare free.

    Ho hum ! guess we just have to go with the good and bad days. But all know that at least on here we can have our moans and other Lupies understand the frustration we all go through.

    Hope all have a good day, and hope we have a better one tomorrow.

    Jackie

  • hi everyone,

    i must admit Lupus tired is not something u can explain to someone who does not have lupus. and i have found that nothing precipitates it. and nothing alleviates it. u have to let it run its course while pacing urself during the period. friends and colleagues call me lazy cause of lupus tired and to a large extent i can't blame them. like my specialists says...ignore them and pace urself... dts the best we can do.

    Oh and ellie i wish you the very best in ur exams. my niece is in ur shoes. i cannot begin to miagine how u're coping love. all the best and i will keep you in my prayers ok.

  • Hi Debs....i have to admit reading what you wrote i said out loud to my partner 'its like ive written that' ive just had 2 months off work and just gone back last week worked 3 hours a day for 3 days, i worked 10-1 was back home by 2, asleep by half 2 till half 5 then early to bed. it doesnt matter how much sleep i have had i still feel shattered. I am seeing a wellbeing advisor who has been talking to me about pacing, what this means is you write down what you do every hour for a week (sounds silly i know) and when you feel the most tired. after the week you can look back on this and see when you have struggled the most, and what you were doing before. this helps you to 'pace' out your day, its been so helpful for me! not saying itll work for everyone but worth a try.....the fatigue is the worst feeling ever, its like someone sucks the energy right out of you i wish there was a pill we could take to re-energise ourselves!! supportive friends, family try to help as much as possible but truly have no idea what we go through

    We just have to learn to chillax when were feeling so tired, take it easy and let others help :)

    Linz x

  • I've had lupus for at least 35 years and the fatigue has always been the worst part, as well as the element which is hardest to prove or to explain to others. The last time I mentioned it to a non-lupie, their response was 'join the club', which made me feel like saying ' I don't need to - I am one of the original founders' :).

    I'm only in my early forties and feel more like eighty most days at the moment, particularly as the arthritis is really bad too.

    Still, i'm hoping that this is the condition at its peak and that things will surely get better from now on.

    Stay peaceful x

  • Hi Laughitup. I love the name. I'm also in my early forties and have told people I feel like I'm in my 80s because of my arthritis, muscle pain and fatigue. I've remarked in the past that I don't know how they get out of bed every morning. Some days just walking is hard.

    When trying to describe to people the fatigue I feel at times I tell them imagine being stuck in quicksand and trying to get out. That's what it feels like. When I describe what it feels like to have lupus, I tell them it feels like when you have the flu. That exhausted, achey, can't get out of bed, fuzzy-headed feeling. These two descriptions have helped me to get others to understand what it feels like to live with lupus.

    My exhaustion gets so bad at work sometimes that I wish my body could just melt into a puddle because just holding itself together feels like too much and even just the act of having to breathe is exhausting.

  • hello laughitup

    thankyou for you reply im too in my early 40s and ive only been diagnosed this year in feb so having lupus for 35yrs must have been tough and yes my arthritis is bad sometimes too,it never lets up and today its bad in my shoulders and neck so i must have done too much on the weekend,last week it was in my knees and made my thighs really ache so walking was hard and pains can last a long time aswell.

    consultants may have learnt what causes all the aches and pains but they have no idea whats its like to live with them everyday.

    and yes i too hope that one day things will get better as we get older we can only hope.

    take care

    debsxx

  • Hi Debs. Sorry you had such a tough day yesterday. I did, too. I hate feeling cranky and down. I know it affects my family, too when I feel this way. I noticed that the weather and stress definitely play a factor when it comes to my aches and pains. I too feel sorry for myself on some days and that's exactly what I did yesterday. The past weekend was horrible with constant pain and it got me feeling so down that I took a drive yesterday and just cried and cried. I spent some alone time which I badly needed. Time to not do anything, no family obligations, no expectations of me. It was exactly what I needed. I hope today goes better for you and all those that need it.

  • Ditto to all the comments about feeling like I'd written Pinky's post. What I hate most is the trade-off. I can go and see family, friends, go for a nice day out, as long as I accept that I will not be able to do a single thing the next day, and maybe the day after too, or for a week or two if it is really bad. If we go somewhere at the weekend, I have to be really careful in case I am not well enough to work on Monday. So, do I shut myself away, or get everyone to come to me whilst I just sit there, just so I can make it to work on Monday? I also have to be so careful around friends with bugs or children (lol) as I pick up all the bugs and then need more time off work! It feels like I am constantly being told "give up" by my body which is very distressing. Trying to remain positive though...I have only recently been diagnosed with SLE, but my consultant and new-ish GP think I've prob had it for at least 10 years. So all the sick leave and being "pathetic" and tired in an "un-explainable" way for so long now has a name, which is a start!

  • My body tells me, "give up, you can't do this", but my mind says, "yes you can". It's a fight we have to live with for the rest of our lives. No wonder we're so exhausted. I try to stay positive, but can't help but feel sometimes that it's a losing battle. Making it through each day feels like an accomplishment in itself. That alone comforts me sometimes.

  • I have had lupus since I was at University in 1963.No one knew what it was then.My twin sister had it too.It only came on my knees but itched like mad.I didn't have the rash all the time and it was years before it was diagnosed.We lived in Sheffield in the 70s and 80s and there was an excellent dermatology dept at The Royal Hallamshire.They found I had antinuclear dna and diagnosed lupus.I had lots of flare-ups on my legs and they took plenty of photos of them to go into a medical book. I moved away to the back of beyond where a dermatologist visited about every 3 months-which is not good when flare-ups occur irregularly.Now two weeks ago I had the most horrible flare-up on my face(my cheek,my chin,all around my mouth and lips-it was horrendous.)It was exactly the same rash as I used to get on my legs.It itched and hurt like mad.I went to the doctor last Friday and all he said ,"It is an allergy-not lupus."I couldn't believe it! So I have no hope at all round where I live.

    from Catkin

  • hello twinner

    i too get a sore red painful rash on my cheeks and all around my eyes and eye lids going into my eyebrows and i hate it.

    i too was told by my rhuemy that its allergy not lupus so im going to dermatologist when apponitment comes through.

    however i disagree as i don t suffer allergies or havent to my knowledge

    the rash comes and goes and ive started to keep a diary of what the weather is like when i get rash and i have noticed that it comes when its been sunny.it just sounds so like lupus to me.it can take a couple of weeks to clear up but i also get swelling of the eyelids too, so im too very confused and mine comes and goes aswell so how is a dermotologist going to diagnose a rash that might not be there.

    sometimes i feel it just part of the disease and ive got to get used to it

    and get on with it GRRRR!!!!

    good luck

    debs

  • Hi Twinner & Pinkie

    Having found this site you have probably cottoned on already that a lot of us had problems with diagnosis.

    If there is more than one GP in your practice, try and see another one. Specifically ask for an urgent consultation with a dermatologist. If your rash comes and goes take pictures.

    When you feel tired and stressed it can seem impossible to keep fighting, especially when you don't really want this as a diagnosis. But it is a relief to know what it is and that you have some possibility of some treatments that may help.

    I can't get outside very much, but I love to see the sunshine. And I spend quite a lot of time lying in the conservatory so that on a bad day, I can look at the fells.

  • Hi, I've had Lupus for 23 years and fatigue has always been a major problem for me. The Drs are not concerned as they don't see it as a big health problem like having my hip and knees replaced, renal disease, myleofibrosis and now osteoarthritis in arms and wrist. I try and get a good nights sleep and have small regular rest throughout the day. However too much rest causes me to feel worse so i feel it's important for me to keep moving and be active especially with 3 young children :-) It's about finding a balance.

  • i couldn t agree more with you metalmarie if i to have too much rest i feel worse,i find that keep going moving or going for a walk with my dog puts some energy back.

    thanks for everyone who has answered my blog i didnt think it would be so popular it just goes to show that we all must at some point suffer with fatigue.

    take care

    pinky56 debs xx

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