With the change in weather it appears the fatigue has taken its toll, no amount of sleep is good enough these days. Thursday night I got 9 hours, Friday I had a 5 hour nap, then a couple of hours later I sleep 13 hours right through until early afternoon. I did manage to work from home on Friday but it wasn’t exactly productive. Today has been a day on the sofa resting, slowly dozing on and off throughout the day no major nap just the odd 20 mins here and there.
I tried to look into things to help but a lot of it is get enough sleep and the other is exercising. I’m struggling to get myself washed and dressed most days and getting so much sleep! Can anyone suggest anything else to fight this fatigue demon?
The dark nights and dark mornings don’t help too much either, I am worried all I’ll end up doing is sleeping soon and not actually living a life. It’s depressing but the more I discuss it with my partner or family they either say I need proper routine or the hospital to do more checks and they worry. I don’t like them worrying and I’d get a routine if I could get myself up but it’s so hard!
Sorry if it sounds like I’m moaning it feels like nobody understands
Leenie x
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Leenie0811
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A few thoughts, although might not be relevant. Have you got enough vitamin D? If unsure might be worth a supplement. The exercise one is a bit counter intuitive, the body drives for efficiency so it will reduce muscle etc to what you do. HIIT high intensity interval training has worked for me. Basically this is where you push yourself for very short periods of time about 80% effort then work at a lower level in a ratio eg 1:3. Example walk vigorously for 30 seconds, steadily 90 seconds. Example step ups on bottom step of stairs 1 minute, steady walking up and down the hall for 3 minutes. Even better do it outside. Exercise tends to improve your sleep quality and by improving your cardiovascular capabilities enables you to do more. It is hard to get going and motivate yourself when you are feeling knackered before you even start, every one finds motivation difficult that's why there are so many personal trainers! The other thing I was told is that getting fitter takes longer than the time to get unfit, so if you don't do your normal activity for one week it might take you two weeks to get back to that point. Not sure l have explained it well enough. Take care
Thank you for all the info! Yeah I do take a vitamin D supplement I started taking it about a month ago to prepare for the change in daylight although I probably should have started taking it much sooner than I have because I’m in the house so much these days. I live in a flat so I try and have my “exercise” as my cleaning tasks, doing short intervals at high intensity completely wears me out. I’m asthmatic too which doesn’t help although the inhaler I use now has kept it well under control for a number of years. I used to do a lot of walking but my feet don’t allow it now they hurt too much. People keep saying to pace the exercise but it’s hard when you used to run 10k and now a small walk seems impossible. I loved the gym and haven’t set foot in one for 3 years due to health issues it could be more.
Building up strength and fitness does take time I know I’m the most impatient so maybe need to stick at things longer to see an improvement. Thanks again for your tips! Xx
Hi Leenie,i can't offer any advice or solution but fully associate with you.I have not been diagnosed with lupus but experience /have most of the symptoms/pointers.just lately I Havev been exoeriencing extreme fatigue and exercise-walking my dogs leaves me completely drained and in pain,I feel need to sleep /go to bed which can be a couple of hours.
It’s so debilitating isn’t it? My housework takes it out of me I try and do one room each day to keep on top of it but I really miss going on nice walks! It’s hard to stop and rest sometimes when jobs need doing especially if it’s pets who need a walk. I hope you’re doing as well as you can lovely xx
same here-can not do more than one room,sweeping up dog hairs is enough to tire me out.( I have no carpets for that reason).Most days have a "siesta" either before or after walking the dogs.
Leenie0811 I have no definitive answers for you, because I haven’t been able to find one myself. Fatigue is horrible, isn’t it? And it’s so hard to explain to others who don’t have it. I got 10hrs sleep last night and have spent most of today dozing on the couch…I really struggle with it too.
Exercise makes it worse for me in some ways, so I’m not much help there. I have a fair bit of chronic pain so my personal theory is a lot of my fatigue stems from just tolerating pain all the time. Don’t know if I’m right or not, but I find steering away from things that make my symptoms worse stops the fatigue from getting worse…but it doesn’t really get much better.
Lots of things can interfere with sleep quality, eg. fluids or food too close to bed, caffeine intake, mental worry or stress, physical pain, light/noise, night sweats…I think all we can do is address the things we have control over, like caffeine intake, and not stress too much over things we can’t, like actually falling asleep. Easier said than done, I know! All the best, I hope you get some relief from the fatigue soon.
I think you’re bang on about the chronic pain causing the fatigue . I’m similar to you in the sense that If I exercise the joints are all so bad afterwards . I did a scleroderma webinar called “managing fatigue “ and I fell asleep 😴 twice through it ! Hope you have a good day x
You fell asleep twice?! Sorry, the irony…😂😂 Yep, I get worse pain after exercise, plus it makes my chronic dizziness play up. Sometimes, during a 45-50min walk, I need to stop several times just to try and settle the dizziness down. So yeah, there are pros and cons of exercise.
It really is awful, my mum has chronic fatigue so she understands how it is but my partner really doesn’t sometimes especially when you have a long sleep and there’s no relief from the fatigue. It’s like walking through thick mud every step is exhausting and the ability to function just isn’t there! I’m in the same boat as you here, trying to minimise the fatigue with what sets it off. I like a morning coffee and after 12 there’s no caffeine for me I’ll switch to decaf. Early nights is another one when I’ve got stuff I need to do in the morning. Journaling helps the mind stresses just writing it out helps, oh you struggle with night sweats? I really don’t know how to tackle this one it’s literally the most annoying thing ever! Xx
Yes, it’s about minimising fatigue where possible, but sometimes we really can’t control it. I don’t do coffee so for me it’s the mud and the sleep! I don’t get night sweats but I get this thing where my extremeties become extremely hot, like sunburn, so that gets uncomfortable when it happens at night. Nothing I can do about that, just wait for it to cool down, but that can take hours. I’m glad to hear journalling helps you, I think that’s a great idea. I’ve done a lot of writing about this and it does declutter the brain!
The tiredness is a killer😕 it doesn't help that I toss and turn in pain all night and wake up in agony. Last week I have been using a magnesium spray to rub in my muscles before bed. It is meant to relax muscles and I definitely feel my muscles feel less painful when I wake up. Maybe worth a try🤔
Hi Leenie. I know exactly what you mean. Managing the fatigue is really difficult and like you the weather change Oct/Nov always seems to make it worse for me. Be kind to yourself and rest when you need to. Is it worth getting some blood’s done to check you’re not flaring and having a couple of weeks off work?
I have a telephone appointment with my rheumatologist in a couple of weeks I’m going to mention it to them. Sometimes my iron goes down too so it could be that it’s a guessing game all the time! They check my bloods regularly with being on methotrexate but I haven’t had anything done for maybe two months I’m probs due another set of bloods. I’ve noticed a pattern with my lupus that it does flare in weather changes so it might be a good idea to have some time off but I’ll have to see what comes of my next telephone appointment. I’ll call the GP this week to see if we can get some bloods done in preparation of the rheumatologist appointment too xx
We are all on our own journey, l have just been trying everything, l am now gluten and dairy free etc. To add to my earlier post. I still need 8-10 hours sleep a night but doing HIIT has given me more energy during the day. HIIT is not like normal exercise it increases cardio vascular fitness using less energy so that is helpful for me. I think pain really adds to every thing since l got that under control the rest has become so much more tolerable. My plan is to just keep trying different things giving each 6-8 weeks to work until I have maximize my health. I know meditation works for lots of people but it just gave me more migraines but I might give it another go in the future. Personally l see Lupus as a challenge and determined to get it as controlled as l can. Wishing you all well
I like the time frames you’re using, I usually give up after a week if it doesn’t feel any different. Could probs use that timescale to see an actual difference! I eat a mainly vegan diet with some dairy exceptions (usually when I’ve not planned food very well) this is due to food intolerances I have my digestion is broken and I have to be really careful of what I eat. I might try cutting out the gluten I did this once before and felt a benefit from it but the price of gluten free made me mad so I kinda stopped having bread and other stuff. I think diet really does impact how you feel a lot of the time and the sleep I’m the same too xx
Fatigue demon..I like that!! 🙌Good phrase Leenie 🤗 I've discovered that there's another term used among chronically ill circles..'energy impairment' which I think describes it perfectly. It's not just tired is it? All encompassing energy loss is what it is!! 😔😴😴😴This time of year is particularly tricky for me too..so completely with ya there!!
I'm gonna offer suggestions which I have found helpful:
I have never napped during the day..even when I was at my worst..HOWEVER I rest often throughout the day. My advice would be rather than nap naturally..five hours is a long time to nap.set an alarm or something to wake u up after couple of hours maybe?
I've developed something like an inner helper..this is gonna sound mad but I'm sure people here will understand 😉I found that I had some inner voice that berated me for all the stuff that I wasn't doing or couldn't do!! This voice in my head I realised was dragging me down even further into the abyss of hopelessness!! Honestly...it became all encompassing..n I felt useless..what's the point..etc.
So I decided that whenever that voice appeared (which was often) I would counteract it with a positive voice instead!!
For instance...me.."I've gotta clean my teeth"
Negative exhausted me.."don't bother"
Me..."ok...but I'm gonna just coz u say I shouldnt"
I clean my teeth..maybe not for the full amount of time..but I've cleaned them!!
Compassionate positive self says.."YAY..WAY TO GO GIRL..U GOT TO THE BATHROOM N YOU CLEANED YIUR TEETH!! YOU HAVE A GORGEOUS SMILE SWEETHEART!! 🙌😁
Try to break tasks down into bite sized pieces..that's what I found helped me. I big myself up for everything coz sometimes it feels like I'm trudging through treacle..n the harder I try to do stuff the worse I feel..so pace yourself. N most of all be kind to yourself!! Lupus is life changing in so many ways n this is why we're all here..hobbling along on the autoimmune highway!!🌈😽😽xx
Yeah the nap was a bit too long usually I’ll put a timer on but I forgot that day haha! I love the idea of a little positive voice sometimes I celebrate the small wins too with a little woohoo! I’m one of those whose like “okay I’ll do that then I’ll rest” but proceeds to do 5 more things before resting! Building in small rests often could be something I could do actually, I find it takes me a while to get going and don’t want to lose the motivation but then it’s counterproductive if you burn out.
Everything is such a balancing act with lupus isn’t it?
Timers, lists and positive voice that’s the goal this week to try and do! Xx
Hi Leenie. I looked back at some of your older posts trying to see if I could understand more. I’m going through a very hard time now after shingles and flu shot. Slept 5 hours yesterday during day. 9 last night. There are 2 parts to my answer to you. One is, this is lupus. This is real. This is what we deal with and try to manage. The next part is examining your meds and your diet. I was gluten free for 4 years awhile
Back. I felt better. Well, I’m a small boned
Person and it simply was not sustainable for me. People can argue this with me but I lost way too much weight. So I eat very little
Gluten and almost no sugary foods. Eating processed foods and sugar foods causes
Me to feel awful. Eggs, chicken, rice/ plain
Foods can help you to figure out your fatigue. Managing your fatigue with lupus
Is a daily job. When I go through my most exhausting times, I remind myself that my body, even though it has lupus, has special needs. One is sleep. Be gentle and kind to yourself. Then soon you will have more energy and you can pass on the kindness.
Aw I’m so sorry you’re having a rough time! I had shingles back in the summer it’s so painful and I hope you manage to recover soon! Yeah I’m nearly 2 years diagnosed with lupus but been struggling for many years before that it took so long to get a diagnosis! I try my best with my food I’m veggie but have a lot of intolerances, I feel like my digestion is broken but until I’ve seen my endometriosis surgeon my GP won’t do any further testing. Fresh food is best, I’m like you I’m small framed and family worry about fluctuating weight. In my teens/early 20s I had an eating disorder so this causes more concern for family when I lose weight.
There’s so much to keep on top of with life long illnesses thank you so much for your kindness and tips it really does help to know you’re not alone and this community is here for everyone xx
Aww I wish there was something the doctors could do to fight the fatigue! I’m nearly 2 years since I was formally diagnosed but been struggling for around 9 years. I hope you’re okay! Xx
I have just bought black seeds and ashwagandha from my local Asian supermarket these are natural plant products, with many benefits I will let you know how I get on x
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