Tired in the mornings

[Mozziebuzz]

Hi all, I Feel so tired in the mornings and have trouble getting going. Am I being lazy or is this normal? I have PMR/GCA but I’m now down to 4mg prednisolone. Will I ever feel my old self again? Moz

[SnazzyD]

Hello, I’ve been a morning bird all my life. On higher doses I was a little earlier but once I got below 10mg my morningness has degraded with dose. Once awake I’m ready to go but I don’t wake easily, but then I also find getting to sleep harder now. I’m not a happy night owl so currently I don’t feel I have command of either end of the day which is most frustrating.

[Mozziebuzz in reply to SnazzyD]

I used to be an early riser too. Long gone. Have a little burst here and there off feeling energetic but it fades out after an hour or so. At least now I don’t feel so alone going through this with your experience of it. Was somehow directed to other posts with similar stories. Just finding my way around this site as I’m a newbie here.

[Daisychain12 in reply to Mozziebuzz]

Welcome! X

[Mozziebuzz in reply to Daisychain12]

Thank you. So good to find others going through this.

[Hollyseden in reply to Mozziebuzz]

Welcome 😊

[Bronni]

I wonder about my tiredness also. It’s been 4+yrs with pmr and I’m painfree & feeling very well on 2 mg per day, but I’m so tired in the am that I often just go back to bed for an hour after breakfast! Fortunately I can do that! So I don’t know if the tiredness is because I’m 4 yrs older? I have no problem with my energy for the rest of the day - so who knows?

[Mozziebuzz in reply to Bronni]

Oh dear I was hoping for better things as I’m to reduce to 3 mg soon. I’m 66 and have had this since May 2017. Was also wondering about how my age affects this. Hubby is still up at 6am though and he is older than me.

[Bronni in reply to Mozziebuzz]

Well this certainly isn’t a young persons illness, so we would probably, naturally, experience some level of fatigue, but to be honest I don’t think I was ever a morning person 😴😀. Ditto with the husband - although he’s asleep already and I’m still doodling around on my iPad!

[Constance13 in reply to Mozziebuzz]

I’ve had PMR for nearly 7 years and can’t get below 4mg. Tiredness has been a major problem for me, but I am considerably older than you.

You may be one of the lucky ones that get rid of this pesky illness quickly but, if not, pace yourself, be kind to yourself, life goes on.

[Constance13 in reply to Bronni]

Last sentence! You lucky thing. 😀😀😀😀

[Bronni in reply to Constance13]

Yes! It’s like finally getting the kids off to sleep 😂

[SheffieldJane]

It is normal for me. I think DorsetLady who has been in club zero for quite sometime, experienced the lifting of random fatigue in her description of recovery. Have you ever had your Adrenal glands’ capacity to produce Adrenaline Tested? The Synacthen Test is quite simple. Sluggish

Adrenals do contribute to fatigue.

[Mozziebuzz in reply to SheffieldJane]

I didn’t know you can have that done. I will ask my rheumatologist next visit. Thanks

[Jean56]

7am. Sitting in bed trying to find the energy to get up. Husband has physio appointment at 10am. I need to drive him there so alarm on for 6am. Stagger towards the kettle, I have to have early morning tea, stagger/shuffle back to bed. Rest, drink tea and contemplate the next set of manoeuvres! Mornings are truly awful. I’m 63, on 10mg, diagnosed 3 years ago. You are not alone.

[Mozziebuzz in reply to Jean56]

☕️☕️☕️☕️☕️☕️☕️🙄😃

[Rugger]

I feel just the same as you and the others, Moz. I'm in bed for 10pm and often not up until 10am, but I used to be a morning person! When I have to get up earlier for an appointment, I feel tired later in the day. I'm also on 4mg and was diagnosed a year before you, in May 2016.

I'm waiting for that miracle feeling of energy when the PMR finally goes into remission.

[shazstep]

Once upon a time I started work at 6am. From my teenage years I was always a morning person. Now if I wake early (5 or 6) I will go to the pool where I walk laps. When I get back home I have a shower and go back to sleep until roughly 9.30. I am still unable to walk all the way around our shopping centre.

I find the fatigue part the hardest to deal with. Usually you improve over time. Yes there has been improvement but not as expected. Then I lower by 1/2 a mg and back to square one.

[DorsetLady PMRGCAuk volunteer]

Hi Moz,

I think, like others, it’s probably a combination of your Adrenal glands not yet back up to full speed and maybe pgetting older.

As Jane said,I was down to about 3mg before my fatigue left me - and even when you are complete off the steroids it takes anything up to a year to really feel normal again

Apart from when I had to get up for work I’m not really an early morning person- doesn’t really matter if you are retired and don’t have to go out does it?

So long as you don’t have any other signs of adrenal insufficiency - nausea, headaches etc - I would say just hang in there. Of course you can request a ACTH Test if you are worried.

If you have arthritis-that can also make you fatigued at times.

[powerwalk in reply to DorsetLady]

Oh well that's disappointing - finishing work soon - was hoping for some kind of change in the fatigue. Suppose at least it won't be such a battle every day!!!

[DorsetLady PMRGCAuk volunteer in reply to powerwalk]

You may well find a change, and even if you don’t at least you can catnap if you need to.

My fatigue was only between the dose of 6mg down to 3mg - so obviously adrenal glands related.

Before and after must admit It didn’t really bother me!

[powerwalk in reply to DorsetLady]

I have to say fatigue has been just about the worst part for me - the pred takes care of the pain most of the time - but god the fatigue. Though I also have had ME for years so it all doesn't help! Thank you.

[DorsetLady PMRGCAuk volunteer in reply to powerwalk]

I think that may also be the difference between GCA and PMR.

I only had GCA, and as I say fatigue wasn’t a big thing, whereas it does seem to be more prevalent with PMR.

[PMRpro Ambassador in reply to DorsetLady]

Yes, I think many GCA patients find their fatigue is due to the high doses of pred so it improves as they reduce. PMR itself has a big component of fatigue.

[Hidden]

Morning!

I’m a wreck in a morning, l’m very lucky as l get my breakfast in bed, then l have a read of the iPad, catch up on my emails etc & come around in my own time.

But, l never was a morning person anyway.

What time do you do to bed, settle down to sleep?

MrsN

[Constance13]

“mornings” - lucky thing, I’m tired all day!!!

[Mozziebuzz in reply to Constance13]

Well then underwhelming the rest of the day but upright at least. 😄

[CT-5012]

Me too, used to hit the floor running but no more. Takes me a couple of hours to feel halfway human. I’m still on 9mg so can’t blame my adrenal glands think it must be PMR. ☕️😫

[Mozziebuzz in reply to CT-5012]

Love my coffee as it does finally wake me up! MB

[SheffieldJane]

I get up promising myself a nap in the afternoon. Sick of being caught in my pjs by the postman. I used to fall asleep after my shower - sometimes with wet hair. At least I don’t do that anymore.

[PMRpro Ambassador in reply to SheffieldJane]

I never see the postie - the postbox for everyone is on the ground floor. When I get a parcel it is as well as it is late morning by the time he gets here! But if I'm not in bed, I have to get dressed. Even a dressing gown isn't acceptable except briefly after a shower to save drying...

[Hollyseden in reply to SheffieldJane]

Sometimes the effort of a shower and hair wash on a "sore" day meant I had to lie down to recover from the effort while hair still wet. Not done that for a while now. Progress 👏👏

[PMRpro Ambassador]

It isn't normal - but it is quite usual as your adrenal glands struggle to catch up with the reduction in pred which has been replacing their produce for however long. You need a boost of cortisol in the norning to get you ready for the day ahead and it isn't as good as it should be.

If you have got to 4mg in well under 2 years I'd suggest considering not reducing again until you start to feel more energetic - let your body catch up.

I CAN get up and get going at any time if I have to and I'm the same age as you - BUT for half my life I have needed a cup of tea before I even get out of bed!!! Luckily OH can't sleep - comes to bed at midnight and is up before 7am so does the tea. I'm in bed at 10pm and struggle to get out at 9am usually!

[NursePeggy in reply to PMRpro]

Hi Eileen, I am now on 6.25mg after over 4 years of PMR. Not really any pain, but a lot of tiredness and fatigue. Have also been having some AFib from time to time recently so am being monitored at the moment. My beta blocker has been increased until my Ecko results come through and it seems to be helping.

I seem to remember someone posting a very funny YouTube of two Cardio specialists dong an Afib dance and wondered if you can remember it or the person who posted it. I would really like to see it again. Hope you can help me find it, I need something to make me smile !!

[PMRpro Ambassador in reply to NursePeggy]

This is one

youtube.com/watch?v=TJR2Afx...(Not working as expected?)

but I think the one you remember may have been from me and done by a friend and his cardiology lecturer!

[NursePeggy in reply to PMRpro]

It was definitely two men in white coats ! I just remember laughng so much when they were doing the AFib dance !! I would love to see it again, do you still have it ?!!!

[PMRpro Ambassador in reply to NursePeggy]

It was from his FB page I think and he has a LOT on it, would take ages to find. I've messaged him to see if he has it still.

[NursePeggy in reply to PMRpro]

Thank you Eileen, much appreciated !

[Mozziebuzz in reply to PMRpro]

Same, complete with wonderful hubby who does the tea. He’s now walking the beach ............

[Hidden]

I think what you're experiencing is normal under the circumstances. I'm the same way. From what I've gleaned from reading and research the body's natural steroid production shuts down at night and so needs time to get up and running the next day. I rather think that when spring arrives it'll make a difference.

[Mozziebuzz in reply to Hidden]

High Summer here Waterwise but not happening yet.

[patriciawhite]

I have to take at least an hour in the morning to unstiffen enough to function ,Polymyalgic RA AND OA not to mention tendonitis apparantly cause that ,according to the doctor .I have never envisaged myself being good at dance ,never mind body popping .However I can now see that I am ,as all my joints and bits settle into place after getting up and the first trip across the landing consists of staggering disjointedly across the landing practising my body popping routine .Hey there,s life in the old dog yet ! .I must show my moves to my grand daughters when we are out some where ,I am sure they will appreciate my modern approach .Errr well maybe ! Then its breakfast YEAAAAAAAAY I use that time to read these posts and have a slow breakfast ,once I have hauled myself out of the bed After a life spent in a rush in bull in a china shop style .I can say this has taken some getting used to .I felt lazy too but I am not, I am just changed and I get that now . It took a while though .

[Mozziebuzz in reply to patriciawhite]

Yes we are definitley changed Patricia and it is a matter for me to accept that, as difficult as that is.