Drop dead tired: Yesterday evening at about 17:30 I... - PMRGCAuk

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Drop dead tired

YuliK profile image
YuliK
β€’27 Replies

Yesterday evening at about 17:30 I fell asleep in front of the tv in my over comfy armchair ...

I woke up at about 20:00 hours, confused and thought it was 8am. Feeling a little pain in my left arm I realized ( or I thought I realized) that I hadn't taken my midnight Prednisone.

I grabbed my medication, swallowed it with the yogurt I had beside me.

Suddenly it dawned on me that it was only 20:00 hours in the evening.

Meaning I had taken my prednisone 5-6 hours earlier than usual.

Until now I'm feeling fine, no pains, but I could kick myself for being so confused.

Next time I'll set my mobile phone to wake me up for medication.

PMR can make me feel so desperately tired 😴 not all the time, but occasionally.

I still am waiting to take my Prednisone and I hope I can hang on until midnight--02:00am.

YuliK. Age 76

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YuliK
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jinasc profile image
jinasc

Do not beat yourself up, we all do it and if you find you cannot wait till midnight-2am.

take half if you just feel you cannot wait and then take the other half when you normally do - I am assuming mid to 2am.

The lighter nights here make things more difficult after a fatigue snooze. I have all my clocks on 24hrs setting because if it was light and said 8.00 I would still have no idea whether it was day or night. 2000hrs makes it clear. You are not alone.

I was removing dye from a pred pill (an experiment), got it all off and automatically popped the pill in my mouth. It was 5hrs before I usually take it. I ended up taking it at 10pmish anyway. So yes, don't beat yourself up! PMR GCA takes us on a merry ride!!

Poopadoop, age 58.

YuliK profile image
YuliKβ€’ in reply to

Poops thanks for telling me that, I thought

senility was setting in. πŸ‘

PMRpro profile image
PMRproAmbassadorβ€’ in reply toYuliK

set in with me about 20 years ago!!!!!

Yellowbluebell profile image
Yellowbluebellβ€’ in reply toPMRpro

On that basis theres no hope for me as have been showing signs for years!!

It’s easily done YiliK but as jinasc says you can always take part of your dose early & tweak it to get back in sync again.

Take it easy 🌷

MrsN x

Soraya_PMR profile image
Soraya_PMR

I thought the phrase was β€˜Drop Dead Gorgeous’ πŸ˜‰

YuliK profile image
YuliKβ€’ in reply toSoraya_PMR

πŸ˜‚

PMRpro profile image
PMRproAmbassador

How did it work?

YuliK profile image
YuliKβ€’ in reply toPMRpro

I'm still feeling not too uncomfortable.

I don't want to get out of my routine, as I'm handling my pmr quite well. ( thanks to all the advice I receive here. 😘)

I shall let you know how long I can last without pains. πŸ‘

AndrewT profile image
AndrewT

Dear Yulik,

An Early, or even, Extra Dose of Meds....I doubt that it will do you much 'Harm' physically.....but THAT'S not the Problem, you FEEL such a Chump! Rather like me, this evening, I set the Digi-Box to 'Record' a programme, whilst I had a lie down- all OK, so far, then I TURNED OFF the plug before retiring! (I have the whole 'System' plugged into an Anti-Serge lead.)

Please excuse the slight 'Pause' there, I was getting the WASHING 'IN'....From this morning...erm, it was still there....heck. It's a Good Job, that nobody, asked me to 'Look AFTER, their dog- it would still be in Peru, most likely....NOT that I'm having a Bad Day, you understand....NOT at all! I think that 'I'll Quit' whilst I still can....

AndrewT

YuliK profile image
YuliKβ€’ in reply toAndrewT

Thank you Andrew

I usually have quite a sharp memory, must admit though, it was a bit scary to loose all sense of time.

Your laundry now needs ironing. πŸ˜€

Oxford8 profile image
Oxford8β€’ in reply toAndrewT

That made me giggle Andrew, We need giggles! πŸ‘πŸ˜„

SheffieldJane profile image
SheffieldJane

Don’t worry too much. Take the Pred sooner, it won’t hurt you, or set back your taper. X

Oxford8 profile image
Oxford8β€’ in reply toSheffieldJane

On a serious note, earlier this week I had my pred and other meds in a pill box. Pred highish dose (15mg) 'cos just had a PMR flare. The next morning I found a 5mg pred tablet lurking in the pill box.

That missing 5mg pred pill has caused me a week of pain - almost at flare level.

If it were me, I wouldn't be waiting for my set time to arrive again, I would take extra pred. The risks (to me) of.not taking it (possible new PMR flare) would outweigh the risk of the extra pred/disrupted schedule.

We are all different but for me the name of the game is 'stop the pain'.

🚫🚫

YuliK profile image
YuliKβ€’ in reply toSheffieldJane

Thanks Sheffield Jane, I did manage to get to midnight without too many complications of pains. ( actually rather pleased with myself)

I went down last night to 5.5mg. πŸ‘from 6mg

I think I delayed trying to reduce for 6 weeks, was out of fear that the pains would be bad again.

My rheumatologist will be delighted. I have an appointment in another two weeks. πŸ™

YuliK. 76

Bloomsbury49 profile image
Bloomsbury49

By the way: my mother is regularly nodding off and waking confused as to the day, time etc not because of PMR but because of old age. And light evenings add to the muddle.

I’ve just purchased an amazing clock for Β£33 - it’s about the size of an iPad but clearly states time, day ( eg Friday afternoon) etc etc. It can be 24hr or 12hr.

Hope you don’t mind me saying - cos it might be useful for lots of situations!

I think it’s called Unforgettable and was specifically created for dementia sufferers. A little search on a certain site will find it!

YuliK profile image
YuliKβ€’ in reply toBloomsbury49

Thank you Bloomsbury, I shall look into it. πŸ‘

Sportsgirl profile image
Sportsgirlβ€’ in reply toYuliK

We bought a similar clock for our 96 year old Mom and she loves it. We all love it and are considering buying the clock.

Blearyeyed profile image
Blearyeyed

Oh Yulik,

I am wondering if there is something in the air because I had same sleep confusion two day before you , not missing my Pred , but taking my other meds far too late in the day.

I took my Pred dose in the wee hours , and had the usual few hours trying to get back off for a few hours rest.

I had got back off to sleep 5.30 , I heard somewhere in my sleep the rumble of the binmen and thought I'd woken a few hours later ,so when I did wake up and went to the kitchen at 9.00 I assumed it was morning .

I took my other meds wondering why my other aches and pains felt a bit harder than usual and looked out of the window at the sky thinking that we were in for one heck of a storm it was so dark.

I went and collected up the bins as the family were away the sky seemed to be getting very dark and I thought a storm was coming , and as I put them away the phone went.

It was my OH from Cambridge . I was very confused that he was choosing to ring me at 9.30 am as he wouldn't usually do something to disturb me. Politely I hadn't asked but mentioned how dark it was and how we were in for a bad storm . It was then that he informed me it was actually night. I'd slept all day !

Virtually 16 hours sleep.

I felt so stupid and very confused , I don't like the clocks changing , so losing 16 hours didn't just muck up my med routine but gave me something like jet lag.

This is one of those times when Deathly Fatigue really affects your system. I've had extra fatigue and general symptoms for the days since , because the Fatigue has added more Fatigue from taking meds too late and the dehydration of the day.

It's taken two days to settle back down the extra gripes , I answer now at 8.30 , but I had to check it was the morning.

It's not even something you can blame on age , or hopefully , as I'm only 48 and a " young" PMR er . Just one of those things of being under the fog of chronic illness and it's accompanying tiredness and variety of meds.

At least you aren't alone now in feeling so disorientated by it all. Pretty sure at some point it must happen to us all.

No great harm as an odd occasion but it's one of those things we have to be aware of.

Hope you are feeling back to normal now .

I'm just still wondering how the postman got past the bins , as they were lined up like an armed guard across the drive with the ' Bin of Doom ' in the middle of them , with very little squeeze room between them!

Take care , Bee x

YuliK profile image
YuliKβ€’ in reply toBlearyeyed

Good morning Bee

I know that many contributors to this forum have complained of chronic tiredness since taking prednisone.

Wow I can completely understand your confusion after experiencing it a few days ago. 😱

One thing I must admit, that I'm chuffed that I'm not the only one that this has happened to.

Sorry it happened to you though, it does make me feel that my age is kicking in, although I'm usually full of energy, read a lot and was quite active before PMR.

Sometimes I need a rest from the rest if you get what I mean. 🌹

Now my iPhone alarm is set to wake me up for medications. πŸ™

Thanks so much for sharing.

YuliK.

Blearyeyed profile image
Blearyeyedβ€’ in reply toYuliK

If only that would work for me .

My tablet alarm and normal alarms ( I have two one giant one that looks and sounds like a fire bell , and the other one , far more polite , is shaped like a carriage clock and wakes you with the coaxing platitudes of Stephen Fry in the style of his role as the Butler in ' Jeeves and Wooster) had all gone off for the full hour and not caused a stir!

All I can say on age , which might also make you feel better , is that maybe you can say , you're not getting old , in fact , you're acting like you're 48 again !πŸ˜‹πŸ˜‚πŸ˜‚πŸ˜‚

Have a good weekend xx

YuliK profile image
YuliKβ€’ in reply toBlearyeyed

πŸ€— to you Bee xx

AndrewT profile image
AndrewTβ€’ in reply toBlearyeyed

Dear Bee,

Postmen, and Women, are absolute Experts in what they do. Some years ago, when I lived with my Mother- in her Parents Bungalow- our Postman rang the door. I opened it "Hello" he said "this is for your Mother" handing me a package. It was addressed to Number 2, however we were at 20, but he 'Found' her.

Whilst I'm 'Talking', to you Bee, how is Linda? I haven't heard, from her, in ages. If you do, can you please 'Pass On' All Our Love. Many thanks, it's just 'Not The Same' without our lovely Linda.

Sending, you both, my Warmest Wishes

AndrewT

Blearyeyed profile image
Blearyeyedβ€’ in reply toAndrewT

I will , I haven't heard from her either as she uses a different site but word from other users to me is that she seems to be ok .

Hope you are doing well yourself , it was nice to see you pop up x

yogabonnie profile image
yogabonnie

I've done it. Taken double the dose ...missed a dose (scarier..but it was fine) and when I travel one way and the the other across the pond there are always hours of confusion. Not to worry too much. we have all done it I think! Is there a reason you are taking some of the dose at night? I take all of mine in the morning. Doc said to do it that way.

pollymarierose profile image
pollymarierose

I've found myself doing the same thing. Taking prednisone early. What I do is just take the next dose at regular time a d it doesn't seem to affect me. I set an alarm to go off at same time every morning but in a few mornings woke up earlier thinking it was time. I've only been on pred for 2 months tho, so maybe someone else may be more advisable. However, I started at 70mg am and down to 15mg and have made the sleepy mistake on both.

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