Lupus and waking in the morning: I was diagnosed... - LUPUS UK

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Lupus and waking in the morning

Ophelia1 profile image

I was diagnosed with lupus in 2020 and am currently on a methotrexate trial. I only started it three weeks ago, so I suppose it's a bit early to expect changes yet. Before lupus I woke up every morning and got straight out of bed. Like most people I would feel a bit sleepy when the alarm went off, but didn't have any great difficulty getting up and starting the day. However, during the past few years my mornings have become more and more difficult. My husband says that I wake up like someone who is coming out of a general anaesthetic. I totally agree with his description. Having had a couple of general anaesthetics in my time, that is exactly the way I feel when I wake up. My husband thinks that I should force myself to get out of bed regardless of how I feel and get straight into the shower. I'm going to try that and see what happens, but I'm not confident that it will have the desired effect. I have noticed that mornings are now very slow and groggy affairs - even when I've slept well the previous night, and I think trying to force waking up will not work, but we shall see............Has anyone anything to suggest from their own experience?

59 Replies

Yes I struggled in the mornings a lot. This was always the case with me since I was a child. I think I had lupus all my life. I never had energy in the mornings but I force myself to go to school, University, work, etc etc but lately has been even worse.

posthinking01 profile image
posthinking01 in reply to EG74

Me too - I would sleep 14 hours a day and still wake up exhausted - low thyroid/cortisol issue.

Oh my goodness yes. Pre diagnosis I used to go to bed after brushing hair, teeth and removing all make up and would slap a bit of night time moisturiser on. I didn't often sleep. I have always had a very poor sleep pattern. But my alarm would go off at 5:15am for work. I'm have that initial thought of "oh, I want to stay in bed," then I'd sort of launch myself out of bed and look pretty normal. I needed to put a brush through my hair but I could certainly pass as looking and feeling not bad, especially after a shower.

Now when I wake up it's a totallu different story. I sort of come to. Sometimes I wake up but am so fatigued that I can hardly roll over. Other times it takes me an hour to actually be able to move. Other times I actually wake up shaking in pain. It feels like I have a pneumatic drill in my body shaking me. It's awful because I can't actually reach for my meds.

Another problem is that I seem to turn into a human inferno during the night. Due to autonomic failure I cannot regulate my body temp so I often wake up absolutely drenched in sweat, not very attractive, with hair plastered to my face. And like you I feel as if I have had an anaesthetic. It's always worse in hit weather or if I have an infection or flare.

Things that I find helpful are

1. I keep my morning dose of beds in a shot glass next to my bed. I have MST and paracetamol so all I have to do is roll over and take them. Sometimes that is easier said than done. But it means I get in top of pain faster.

2. Fresh air helps. I have had Aircon installed in my home because of the body temp problem and unfortunately this means I need the windows shut. I wouldn't be without air con but I have noticed lack of fresh air at night makes me more muggy in the morning so I often go downstairs and sit in the garden in the shade and have my breakfast to wake me up.

3. Coffee and dark chocolate. I mostly avoid caffeine because I have EM but sometimes I find it can really help. And a small square of 79%coco dark chocolate helps too. It's medicinal as it has caffeine in.

4. Shower. I often feel more awake after a tepid shower. My Rheumatologist told me to only have tepid showers and anything to hot might make inflammation worse and dizziness worse and apparently if you have a cold shower then it's a bit of a shock to your body and causes stress to your body as it has to adjust. Who knows? But I do find tepid works for me.

But then you get those days when you drag yourself to the shower and afterward you feel so fatigued by just showering that you want to go back to bed.

I think it might be an idea to wake up. Sit up and have a good cold drink before you get up. I bought a water bottle online which is one that keeps fluids cold for 24hrs. It's a bit heavy but having a cold glass of water in the morning instead of a Luke warm one has helped wake me up. Then I would do a few stretches before getting inti the shower just to make sure your blood pressure is up enough. Our blood pressure generally drops when we lay down so it's good to make sure that you have got your circulation going before getting in the shower.

Do you eat breakfast? I've found switching to a protein based breakfast to be very helpful. It also keeps me from getting a sleepy feeling after eating and keeps me full for longer.

Thats just my experience anyway. Sorry for the essay but yes, I was saying to a friend the other day how I used to wake up normal but now I wake up in a right state.

Lulamay7 profile image
Lulamay7 in reply to happytulip

Hi, I'm very lucky I dont have to get up if I don't want to. Happy tulip has some fantastic suggestions, I keep my pain meds in a shot glass too but for a different reason. I often wake up around 4am and will take a pain pill but then when I actually wake up at 6 or 7 I don't remember if I've taken my meds. If they're not in the shot glass I know I've taken them. If I take the tramadol too close together I hallucinate.

happytulip profile image
happytulip in reply to Lulamay7

That's also why I keep them there to help me know if I've taken them. Great minds!

Hi happytulip… I read this and I thought, this is me!! I’m not yet diagnosed autoimmune but have fibro and erythromelalgia and severe dry eyes. Lots of rashes that come and go. I’m so with you on the dark chocolate - my partner says it’s like I’ve had jump leads although in fairness I do tend to scoff half a bar of Green & Blacks in one go 😆 Do you mind me asking if what you mean by EM is erythromelalgia? I’m waiting to see a specialist in autonomic disorders and small fibre neuropathy as well as for various results for tests the rheum ordered. I appreciate the consultants’ time and thoughts but trying to decode the letters is like piecing a jigsaw together without the front cover; I now know to come here to work on what’s being considered! X

Yup EM the dreaded Erythromelalgia. I feel for you, not a pleasant condition.

Tiggywoos profile image
Tiggywoos in reply to happytulip

2nd that 😒xxx

EG74 profile image
EG74 in reply to Winter_night

Hi Winter_night, I think EM is for erythromelalgia, I also get lost when people in this forum write APS, etc etc but I think I’m finally understanding some acronyms. My hands and feet get hot , red and swollen so I diagnosed myself with erythromelalgia as I found that looking for this symptoms and I actually told my rheumatologist when they were assessing me I think it’s erythromelagia but they never confirmed the symptoms name. I also have problems with temperature, my whole body is cold as a dead person haha 😂 and if I do exercises my face turns red and stays red for at least an hour. And I sweat a lot when I do exercises. Anyway I also eat raw chocolate as it’s the only thing that keeps me awake and few times coffee but this makes me too nervous so I avoid coffee.

happytulip profile image
happytulip in reply to EG74

Sorry, I worked in medicine so it is like a second language to me. Also I find that if I use abbreviations I don't have to text so much which can hurt my hands. Why are medical words so long?

If you're never sure just ask. Someone will always be happy to explain. And I suppose you have to be careful too as you can get crossed wires. For example someone told me they had abnormal LFTs, so I thought they meant Liver Function Tests but they actually meant lateral flow tests.

Ophelia1 profile image
Ophelia1 in reply to happytulip

Hi Happytulip - Many thanks for all of your tips, which I have taken note of. Nothing is easy with a lupus diagnosis🙃

happytulip profile image
happytulip in reply to Ophelia1

I meant to add that I find it helps to be hydrated before I go to bed. I do hope some of the ideas help. I miss the days when I used to wake up "normal."

Such good advice above. One thing is you just can't push through this kind of exhaustion. If you do it will come back and hit you even harder the next day generally. Go with your body, it says it needs time to get up and adjust. It would be hard for normal people if you woke them up in the middle of the night and got them to go shower and get dressed. There wouldn't be many who would spring up and do it and get on with the day at say 3am in the morning. This is how I explain the exhaustion to my husband and he understands now. Your body is so busy fighting everything that's going on internally and externally that it needs to rest a lot more in order to put the priority into that. If things take longer then they take longer to do. This was explained by my Neurosurgeon years ago that in order to keep going the body needs to shut you down to stop you from overdoing things. Just having a long conversation can take a lot of energy out of you. My husband is so good and understanding and knows exactly when I've been pushing things and he makes me rest in fact he's better than me at stopping me overdoing things. It's just something your husband will get used to in time, perhaps take him to your next Rheumatology appointment or watch any of the Lupus uk seminars on fatigue as it may help him understand what's going on. You as a person have changed and there is not a lot we can do about it, it's about managing life as it is and waiting for the miracle cure that may come one day. Don't ever feel bad about not being able to manage things now that you used to find easy.

I totally agree about aircon, would not be without it these last ten years. Down side is even dyer eyes and mouth. It's on and off all day and night in my house, summer and winter😆

Ophelia1 profile image
Ophelia1 in reply to dg70

Many thanks for your reply dg70. I can't wait for the miracle cure 😀

Hi Ophelia 🤗Glad to hear you've started the Methotrexate..it has given me a bit more energy..hope it works for you too.I'm not a morning person n since having lupus it's got worse!! I've been working on my sleep hygiene n have come up with some fairly strict rules which are helping me. I turn everything off at 9pm n go to sleep and I wake up at 6am even if I've had a rough night. I wake up but I don't get up until several hours later. I take Paracetamol at 10am n then by about 11 or 12 noon I get up. I live in a bungalow so it's handy for me not having to go up n down stairs.

The idea of getting out of bed n straight into the shower will probably not work..I say this coz lupus is a tricky beast n when I've had a shower it wears me out n I have to rest for a day or two afterwards!!

If u Google the Spoon Theory it gives a great explanation on how it is living with the fatigue that lupus brings. I used it to explain to friends n family what it's like living with this 24/7 n they now understand much better.💜🌈😽😽xx

Ophelia1 profile image
Ophelia1 in reply to Krazykat26

Hi Krazykat26 I will google the spoon theory - sounds interesting. Many thanks for your response

Hi Ophelia, yes the coming out of a general anaesthetic is exactly how I feel each morning now. Like you I used to be up at 6 am and walk the dog, shower, breakfast and be in the car by 7.30 on the way to work. Now I do not sleep well but when I do go a bomb could go off under me and I would not wake up. When my husband tries to wake me he has to shout and shake me, I am disorientated, wobbly on my feet and have actually fallen asleep on the loo. I drive him mad because I struggle to get going when I have appointments. I call it walking through treacle. When I wake up naturally I am so much better. I put it down to my medication but maybe not. Just relieved it is not just me. Big Cwtches to all the morning zombies xxx

Do you think it's the disease or the drugs we're on or both?

My guess is both. My husband once threw water on my face as shaking hadn’t woken me. He unleashed the hounds of hell 👹. It made me feel very disconbombulated all day. I was so angry. He won’t do that again lol xxx

Oh my gosh, talk about giving you a proper shock and putting you into flight or flight. My heart rate would have been pumped for days after that. If anything shocks me I can turn into my own for of The Hulk......well, I am on steroids after all!x

Ha ha I didn’t need the steroids, he is just lucky that I have two knackered knees and couldn’t catch him. I was beyond angry. I can still throw things and believe me he had some direct hits as he legged it xxx

An ex of mine did that once..pre lupus days. About a week later I woke him up with a kiss n he thought he was on for a u know what...I had an empty saucepan n made out it was full of water..shouted PAYBACK TIME!! He got the shock but without the water..I didn't fancy changing the bed that day!! 😹💜🌈😽😽Xx

Ha ha good for you Kat. I bet he did not do that again? Xxx

Hi CecilyParsley - Your comment about falling asleep on the loo made me laugh and it really resonated. My husband brings me a cup of tea first thing and I often find myself nodding off again while drinking it. It's all so tiresome. Many thanks for your response.

You have to laugh don’t you? The joke is that I am an insomniac and awake until the early hours unless in a flare, so when I eventually go to sleep there could be a full blown orchestra playing next to me. Ido not wake for anything. When my hubby was working away from home he was so often anxious because I didn’t wake to the phone or the doorbell as he rang friends and they battered the door. He was scared I had fallen so started giving people keys. I woke on many occasions to find people sat on my bed. 😂😂 xxx

Oh Cp you did make me laugh 😂 when I read this last night so thank you 🙏. Jeeze we’ve got to find some humour haven’t we ! I wouldn’t mind finding a smooth talking 🥵 hottie at the end of my bed 🛌 🤣. Big hugs 🤗 xxxx Ps I love the zombie 🧟‍♀️ emoji

I am pleased I gave you a giggle. Yes you have to laugh or you would go crazy ( well crazier lol). No hotties ever sadly just female friends , just as well with the bed hair, mouth open, snoring and dribbling. Not the best look 😵‍💫 xxx

I fall asleep on the loo. I’m scared of falling on my face.

I have fallen and broken my nose twice and twice knocked my front teeth out so the fear is real xxx

Have you had your thyroid checked as there is a link - that is extreme and you should be checked - I have Lupus with thyroid dysfunction and the fatigue is 90 per cent i proved and on steroids - methyl prednisone.

I have an Underactive thyroid. Currently on 120 mcg Levothyroxine. Xxx

Has anyone tried DHEA ?

No never sorry

The thing is,I can fall asleep on the loo,then go back to bed and lie awake.I suspect I have a sensitive bladder.I don’t want to tell the consultants,they’ll refer me to yet another department.I can’t stand the thought of any more medication.

If I contact GP,he will refer me.

I feel as though I’m between a rock and a hard place.

I feel your pain. I am under urology for stress and urge incontinence. They have really help with vaginal atrophy and constant UTI’s so it was definitely worth the referral for me xxx

Xx

Hello Ophelia1I can relate to your morning issues.

I am 47, diagnosed nearly 9 years ago.

Until that point, I'd worked and we had 3 kids, so getting up arpund 6.30am/7am was our normal work/life routine.

I now no longer work and my children are all teenagers.

Particularly this last month, when I've really struggled, mornings are hard.

I usually try to get up during term time, around 7.30am, take the dog out and wave the kids off to the school bus.

I managed this once in July.

I have been sleeping until 9-10am. My husband has been letting the dog out to do her morning business and then she comes to sleep on my bed and I stay there until I wake up naturally.

I know that I am very very fortunate to be in this position, of not working and my family are amazing, but I feel enormous guilt at my lazy sluggish starts to the day!

That being said, one of the lessons I have learned since diagnosis is, if I set an alarm early and I have to get up for something, I will be exhausted by 3-4pm and need a good nap. However, if I sleep in and get up when my body wakes me, I can cope with the day without a nap. But I cannot do early start and no nap. Impossible. Whatever meds I am on. The fatigue unfortunately never goes away completely, you just learn to find your new normal.

I hope you find a routine that works for you.

Best wishes

Wendy

PS There have been tough times when I've needed a nap after a shower.....

Ophelia1 profile image
Ophelia1 in reply to Wendy39

Hi Wendy - I know exactly what you mean about the guilt. It's really annoying to feel guilty when there is nothing to feel guilty about. Nobody on earth wants to wake up feeling like we do, but it is what it is. When I drag myself out of bed, the first thing I do is sort out the cat litter tray, give the cats fresh water and dried food, and then give them their morning treat of a slice of supermarket roast beef cut into pieces. This should only take a few minutes but it seems to take forever and feels ridiculously onerous. Prior to lupus I wouldn't have even noticed myself doing these small monotonous tasks, but sometimes just sorting out the cats feels like moving mountains. Ridiculous!

Tiggywoos profile image
Tiggywoos in reply to Ophelia1

I totally sympathise with you … I’ve been known to pour orange juice in the cat 🐈 bowl 😳. Me and my friend call the guilt “Garry”!

I’ll drag myself round the block sometimes just to get rid of Garry but you’re absolutely right we’ve got nothing to feel guilty about . This is prob a bit controversial but sometimes I think I cope better with pain than fatigue .. the fatigue in itself is so draining and tiring if that makes any sense !!

Thanks for a great post ! Big hugs 🤗 xxxx

Ophelia1 profile image
Ophelia1 in reply to Tiggywoos

Hi tiggywoos - No, I know exactly what you mean about the pain and the fatigue. I could cope if it were just the pain and raynauds etc. It's the fatigue that really affects my life negatively. I have mental and physical fatigue and it is really impacting negatively on my ability to work. I'm currently off sick (discovered that I was low in iron again in April and had an iron infusion, the second in two years) I'm going back to work in a couple of weeks but am feeling anxious about how I will cope mentally. Before I went off sick I had reached a point where I couldn't think clearly or concentrate. That's why I had to go off sick, not because of the physical issues.

Tiredness in the morning and the inability to get out of bed were one of the first signs to me that something was wrong. The other sign was the joint aches.

I'm on prednisolone which helps a little with the fatigue. But it's not idea long term.

The next thing I say may sound a little odd. I find that if I sleep too much, I fee more tired in the morning. So, if I go to bed at 10 and plan to wake at 7, I struggle. But if I go to bed around 11:30, it's not that much of a struggle. And if I sleep for moe than 9 hours, I'm fatigued throughout the day. Told you I would say something odd!

And what's this about the dark chocolate??? I like the idea of rating chocolate to feel better 😀 Do you guys have it for breakfast to give you that energy?

Tiggywoos profile image
Tiggywoos in reply to SurferGuy

Good question about the chocolate 🍫 I’m also intrigued ! 😋

happytulip profile image
happytulip in reply to SurferGuy

Yup. One square of high quality dark chocolate. Avoid the cheap sugary stuff

SurferGuy profile image
SurferGuy in reply to happytulip

But what does it do? Can we have 2 squares? Maybe 3? No more than 4. That would be naughty. Or would it! 😂

Tiggywoos profile image
Tiggywoos in reply to SurferGuy

I guess depends on size of squares 😉

SurferGuy profile image
SurferGuy in reply to Tiggywoos

🤣

Does dark chocolate it help fight morning fatigue? Or fatigue in general even?

Coffee was also mentioned. Unfortunately coffee has no impact on me other than making me go wee constantly 🥴 So if chocolate works, then do be it. Although I'm not a big fan of dark chocolate.

Tiggywoos profile image
Tiggywoos in reply to SurferGuy

Can’t say I’ve tried dark chocolate in morning . Pint warm water clears my head first thing as like you coffee doesn’t do anything really . The fatigue is bane of my life as I’m sure it is yours and so many other peoples on here . The only time I feel less fatigued is if I do nothing 😳but I know that’s not good for mind or body!

Oh to have a magic wand 🪄

Tiggywoos profile image
Tiggywoos in reply to SurferGuy

A dark chocolate brownie could be good .. maybe not for breakfast 🤣

SurferGuy profile image
SurferGuy in reply to Tiggywoos

You, Tiggywoos, are a very bad influence 🤣

Tiggywoos profile image
Tiggywoos in reply to SurferGuy

😂😂😂now that has made me laugh !!

Hi - there are cycles of sleep - if you drop down into the deeper sleep and wake up within that cycle you will feel awful - better to wake up in the lighter sleep phase as you have found - someone at work told me that when I said exactly the same as you.

Dark chocolate - medicalnewstoday.com/articl...

Hope this helps:

sleepfoundation.org/stages-...

Thank you postthinking01 🙂I read the chocolate study late last night. Going to pop over to Asda later to pick up some Green and Black's ☺️

I have been prescribed Plaquenil 200mg with side effects as you describe in your post. before taking Plaquenil I was ok. I also started having serious problems with my eyes. i stopped them some 12 weeks later due to the severe toxic side effects. I hope you get better.

Hi Catherine 1712 - Thanks for your reply. I hope you get better too.

Hi and welcome

Yes indeed I do struggle i get up take 1st lot medication then rest then up again feed cats then I nap.

Then I struggle move especially 1st thing I agree tepid showers are good in summer.

I'm also on methotrexate well I will be once my body calms after a bad fall week ago.

I re start methotrexate next week now usally in flare id have steriod depo when been off methotrexate.

But my immune system doesn't cope so I'm suffering badly.

I found methotrexate kicked in in 2 to 4 weeks it helped me rise in morning less stiffness.

Remember your drug safety blood tests aswell.

I'm on monthly now mine were 2 weekly to begin with.

All best glad u joined here very good site

Ophelia1 profile image
Ophelia1 in reply to soul22

Thanks for your advice Soul22. I agree that this is a good forum Lots of support and good advice.

Hi everyone - as someone who has Lupus but also running alongside this was an undiagnosed thyroid problem/adrenal gland problem. Whilst I know that most of you will be under a Rheumi - I personally did not find them helpful - nothing but heavy drugs - but hearing of people being so exhausted they are falling forward off the loo is very very worrying in that I feel there is something else going on - thyroid or vitamin and mineral deficiencies perhaps - do you also run with an endocrinologist for your Lupus - when my thyroid was sorted my extreme joint pain which rendered me hardly able to walk - just went - the fatigue also but not entirely - there is a new phenomena now that some cases of thyroid deficiency are not being picked up due to antibodies masking the true picture via the blood test. Just a thought. My morning exhaustion was alleviated when I went on steroids.

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