So exhausted AGAIN!!! Give me a break seriously! - LUPUS UK

LUPUS UK

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So exhausted AGAIN!!! Give me a break seriously!

Sara_A profile image

I don't really know why I'm writing this post as I'm pretty sure if I look back I've probably written at least 1 if not more about being soo tired and exhausted!!

But pls forgive me as I think it just helps me to vent to someone cos otherwise I'm just gonna cry!

I feel so drained, tired, exhausted, all of the above any name you want to give it....I just can hardly get off the bed or the chair, it feels like such a massive effort as though I've got bricks tied to my arms, legs and entire body.

I just feel that I need to sleep constantly but I can't as I have kids and dogs and a home to run so I need to be up and about I can't just stay in bed asleep all day.

In the night my joints really hurt so I'm thinking that must be what's causing me to feel so rubbish so today I have upped my steroids a bit and will try that for a few days to see if I come back to a mild lupus person rather than a moderate one 😂

Fatigue is literally the worst symptom for me, pain I can deal with, migraines hmmm maybe not the 3 that i remember and will never forget 😂😂 1 ending in hospital. Memory well I probably forget that I've got memory loss anyway so yes fatigue is the worst thing ever!

If u have read this thanku, it has stopped me from crying anyway and now I'm going to go to sleep, for some unrefreshing sleep and wake up in the morning feeling probably very similar to I do right now! 😆😆 tired, like I've not slept and like I want to cry!

Xx

28 Replies

Please,if you want to vent ,please do so.There’s always some one to listen.

Give yourself a hug x

Hi Sara I can sleep 12 hours , get up and still feel exhausted all the time so your amongst friends here that truly understand what your going through. Sending big hugs to you 🤗🤗🥰

Tiggywoos profile image
Tiggywoos in reply to svfarmer

Prince tiggy gave me one of his “looks “yesterday and I said mummy is fine she’s just tired 😂. Do your girls do that ? Xx Hope you’re coping ok in heat and have one cool room xxx

svfarmer profile image
svfarmer in reply to Tiggywoos

I talk like that all the time to my girls 😂😂 they do understand us 💞

Tiggywoos profile image
Tiggywoos in reply to svfarmer

i've started waving at Prince Tiggy from the window and the neighbour didn't know where to look 🤣🤣

svfarmer profile image
svfarmer in reply to Tiggywoos

😂😂😺 bet she’s thinking “ that’s that crazy cat lady “ xx

Tiggywoos profile image
Tiggywoos in reply to svfarmer

I think I crossed that line a long time ago 😂😂😂. No one will be laughing when he starts waving back 🤩

svfarmer profile image
svfarmer in reply to Tiggywoos

And he will cus he’s very clever I know - I mean how many cats do you know who back in the window 😺🥰

Tiggywoos profile image
Tiggywoos in reply to svfarmer

Stop it I’ve got a pain from laughing 😆 xx

svfarmer profile image
svfarmer in reply to Tiggywoos

It’s the laughs that get us through 💗

I’ve just woke up from 8 hours sleep and honestly feel exactly the same as you’ve described. I feel like ai should be in recovery coming round from an anaesthetic I feel so groggy and stiff and everything hurts. It’s like I don’t have full control of my limbs or my senses. So disappointing isn’t it to feel like that even after sleep.

I don’t have children to care for (they are adults) and honestly I feel so sorry for those of you that do while feeling like this. It’s hard enough for me to go to work like this!

I hope you have someone you can rely on to step up and help you if possible. Take care and I hope you come to a more manageable level soon.

that is a brilliant explanation.. it is like coming round from an operation!! you wake up and think "what the hell did I do yesterday to feel like this! xxx

Vent away, I slept on and off for 24 hours the other day, I took 4 covid tests as I had every symptom but I think it was a flare. I just couldn’t stay wakened, I was so so tired. I wake up tired every day, I’m wondering if my B12 is low again. Take care of yourself, I hope it passes. X

Hey lovely

I’m so glad you posted. You sound like super woman !!!!!

👧 and 🐩 and house that’s a lot to deal with ! Being ill is a full time job in itself 😳.

Don’t worry about crying as I do think it’s better out than in sometimes (I try not to do it in Asda tho ) !

I’m normally crying by Tuesday telling the other half I’m so tired I think I might die and not make it to Friday ! I’m not making a joke of it at all I just want you to know you’re not alone 😘🫶.

All of us in here know exactly how you feel. SML and svfarmer taught me the only way to cope it to try and pace and save a spoon 🥄 but god only knows how you do that with children .

I do think this weather is defo draining us more even when inside .

Big hug and do try and be super kind to yourself xxxxx

svfarmer profile image
svfarmer in reply to Tiggywoos

Thanks for the mention Tiggy ❤️

Krazykat26 profile image
Krazykat26 in reply to Tiggywoos

Other supermarkets are available 😭😹😉💜🌈😽😽xx

Hi Sara_A Sorry to hear how aweful you are feeling. You vent as much as you need to, this site is the place to do it. We can't take away how you feel but we all understand.

Lots of ❤love and hugs

🤗 xx

Get it off your chest Sara 🤗This is why we're all here..to help each other along this rocky lupus road we're all on!! Hey girl..even superwoman has off days!! You're doing great!! Raising a family n looking after dogs whilst keeping everything in order is exhausting in itself let alone when the dreaded fatigue kicks in!!

At times like these I give myself a bit of self talk. It might be in the mirror or just as I'm going about my daily stuff. It's like I've developed a compassionate self/mother figure if u like. The kind of conversation I'm talking about goes something like..Me..I've gotta clean my teeth but I don't want to..I'm tired. CS (compassionate self)..I know you're tired...it's a struggle today I know. How about u go to the bathroom n try to brush your teeth..you know u always feel better afterwards? Me....I'm not even sure I can make it to the bathroom. CS..just take it one step at a time n if u really can't u can get back to the chair..ok? Let's try. Me..ok. I clean my teeth even if I don't do it as vigorously as I normally would. CS...WELL DONE GIRL I KNEW U COULD DO IT!! Now let's go n have a rest!! 😹🙌

Try not to berate yourself too much hun..it is what it is n if u struggle against it it only gets worse I find!!

A cry is good too..helps to relieve the pressure you're putting yourself through right now..be gentle with yourself 🤗

This is where your nurse training n experience comes in handy I think..your the patient here n u have caring nursing abilities so maybe u could self talk as if your your own patient? 🤔

Gentle hugs..the heat ain't helping either!! Hope the increase of steroid gives u some much needed relief soon as 💜🌈😽😽xx

I am having a really bad time too, s can sympathise with you, I am in tears with pain everyday and can't sleep at night etc, but I am retired,it must be so hard for you, sending gentle hugs xx

Tiggywoos profile image
Tiggywoos in reply to Poshcards

So sorry to hear that that's awful😧. sending you a gentle hug too xxx

Thanku to u all its really helped to know that there are so many of you that clearly get what I mean.Last night I couldn't have even walked to the end of our driveway!

Today I woke in pain and in the night I woke a couple of times with joint pain.

I managed the 5 minute walk to school this morning but a friend brought me back home. I then managed a 20 min slow dog walk in the shaded woods late morning.

I've had a fairly quiet day, had pain management zoom this afternoon and now to the school run.

Thanks for all the support

Ps I'm going to try this Mediterranean diet that is recommended for inflammation see if that helps me overall. I do need to lose weight too!

Krazykat26 profile image
Krazykat26 in reply to Sara_A

Well done!! 🤗🙌💜🌈😽😽Xx

Have you ever had a sleep study? If not please arrange one.

Sara_A -

Boy, can I relate. I had that fatigue after several weeks of low grade fever and achy like mild flu. The only way I could describe it to my rheumatologist was « I am sure all your patients say this, it is fatigue like no other, and I did a visual of me on an examination table and being so tired I just lay there not caring whether the doctor ever came in. » Like you, I relied on prednisone after I couldn’t remember my doctor’s name or the medication when I called the pharmacy. For once, he agreed I did the right thing.

The fatigue kills the spirit. Good you tried upping the prednisone. As @Roarah said, get help regarding the sleep. These things can be multi-causal. Your joint pain may affect your sleep, the inflammation causes immense fatigue into itself, and then you can’t exercise which makes it worse.

No judgement in taking medication to help you sleep. You might talk to your GP about that.

So sorry you have to cope with this right now. If I had a human charger, I’d be there to help.

Xx K

This may sound crazy but some doctors are putting lupus patients on ADDERAL for fatigue. I have read it really helps some.

Alida_Horne profile image
Alida_HorneAdministrator

Hi Sara_A

I’m so sorry you are suffering so badly from fatigue, which we know is one of the most difficult symptoms of lupus to deal with. I’ve added below a link to an article which talks about managing fatigue, which I hope you will find helpful:

lupusuk.org.uk/managing-fat...

If you would like someone to talk to, you can request to be put in touch with one of our trained LUPUS UK Contacts. Our Contacts are not medically trained but are there to offer both emotional and general support. The telephone service is confidential, and you can disclose as much (or as little) as you wish. We do not make any charge for this service. You can ask to be put in touch with a contact at the link below:

lupusuk.org.uk/contacts/

You mentioned altering your level of steroids. Is this something you have agreed with your consultant? If not, I'd suggest you do just give them or your GP a call to discuss how you're feeling and whether or not a change to medication is advisable.

I hope you will find the above information helpful, but if I can help further, do please let me know.

Kind regards

Alida

Sara_A profile image
Sara_A in reply to Alida_Horne

Hi thankyou so much for that information I will definitely look at the support service.I have read about fatigue so many times and feel that I know what they say etc but when you are in that actual moment nothing like that actually can help. I know there is nothing specific that can take the fatigue away.

With the steroids, yes I have an agreement with my consultant to up my steroids as necessary to a max of 30 mgs daily then a tapering back down regime (I am a nurse so have some experience which my consultant is aware of).

I see him every 12 wks anyway so I can always tell him when I've had to increase etc which is usually every 3-4 months actually!

I'm battling now at 8.20pm to try stay awake but it's just not gonna work so will have to give in!

Hi Sara, you are in very good company here! The fatigue is THE WORST and we understand what you’re going through. Feel free to vent here as much and as often as you want.

I’m just coming out of COVID-19 so my fatigue is worse than usual. I even slept in this morning after waking up at my usual time—this never happens! I’ve got that bone-deep weariness where I wanna sit down after doing the simplest task, coz it feels like my legs are gonna give way from under me. It’s so hard because fatigue affects everything else: pain, motivation, emotions, mental clarity, relationships, all of it.

I don’t have any panaceas for fatigue, just the suggestion to be nice to yourself. Do simple nice things that involve no effort: a fluffy blanket, a funny video, nice pics of beautiful scenery, patting a dog or cat (if you have one), favourite music. Also chocolate 🍫🍫🍫 And cut yourself a bit of slack; we all wish we could do more, but there’s no way to force your body to feel better, just gotta roll with it! 🌻🌈

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