Hello all, I have reduced my pred down to 9mg and my last blood test reading were good. However, I seem to have been struck with the worst tiredness ever. I fall asleep every time I sit down. Is anyone else having the same problem? I am so tired now zzzzzzzzzzzzzzzzz.
I could sleep on a clothes line!: Hello all, I have... - PMRGCAuk
I could sleep on a clothes line!
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sandrathecat
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On 9 mg pred you are likely to be in what I visualise as no man's land between where pred had replaced your cortisol and your adrenal function, and where your own adrenals re-awaken. Have a look at the post earlier today by Marijo1951. That should explain why you are experiencing the deadly fatigue.
Thanks very much for your answer.
Yes a lot of us can relate to the fatigue, to put it mildly!! I finished work on early retirement mainly due to the horrendous fatigue. Been known to literally have to put my head down at lunch with my friends at lunchtime. I could not hold my head up. You are not alone.
Thanks Powerwalk. I was getting worried about this so I feel reassured now. Best wishes to you.
One thing that I've always been grateful for is that I was already retired when I was struck down. I couldn't have done the commute there and back, let alone the 7 hours of graft in between. On the whole I'm also glad that I live alone (although deep down I'd like a nice partner) as it means I can follow any schedule or lack of one that suits me without inconveniencing anybody else.
Oh i know. Sometimes i feel bad cos im always soooo tired. I long for a bit of normal. I got so bad in work that i could just about string sentances together some days! It just became un doable. Its a whole new level of fatigue!
Yes, I also had to retire, not so much due to pain but the immense tiredness! Never mind, this is a self limiting condition, mostly, so we are lucky🌞😉alida
Well, I wasn't too bad at 9 mg, but at 8 mg I am exhausted as I have ever been. I feel as if I've just done a 12-hour shift as a lumberjack, when maybe I've washed a few dishes. Going to join you on the sofa...
in reply to Marijo1951
I've been on 9mg for several months, supposed to be on 7mg now according to Rheumy. I too, feel so tired when I dropped from 10mg. Went out yesterday to hospital for my daughter's appt, taxi there and back, nothing else and am absolutely drained today. Started watching Tour de Yorkshire but felt knackered doing that and fell asleep on sofa. All that energy cycling! Take all my stamina to get onto bike - let alone being able to squeeze into lycra shorts. Oh well,Tomorrow is another day ,
Marijo1951 in reply to
I've always had bad balance and never managed to master bike riding. Earlier today I went on a canal trip from the London Canal Museum. It was a Mother's Day present from my son. I really enjoyed it but had to have a long nap when I got home.
in reply to Marijo1951
Glad you had a good trip but so nice to get home and relax.
Welcome to the sofa. We will probably both be asleep in a few minutes!
Enjoy.
PMRproAmbassador
Make the most of it - and maybe your body will catch up in a week or two!!
PS - it is one of the reasons we push the slow approaches to reducing!
I hope so. I keep missing the end of my favourite tv programmes!
Far better to record them!!! I hate live TV now - can't fast forward the crap ...
in reply to PMRpro
I dont watch anything live these days. Ads drive me mad and i do skip through boring bits of things.
What horrifies me is the subjects of the blasted ads!!! I'm appalled at former celebs who are persuading their fans to part with good money for rubbish. A certain former cricketer who could do with losing some weight - I'm looking at you!!
And OH is on Meritene to GAIN weight - and the folks supping it during gym classes certainly don't need to!!
in reply to PMRpro
That 😡 feeling is why i cant watch them.
If it's something I'm really into (e.g 'Line of Duty' or 'Follow the Money'), I have to watch at least twice to be sure I've got all the subtleties. I can't record with my rather primitive telly so I rely on iPlayer and the other catch-up channels.
I think it is the last Line of Duty this Sunday so we must try to stay wake for that one as it has been a great series.
I've been told that they have commissioned another series so they'll probably leave more than a few loose ends, which I for one will have completely forgotten by the time the new series starts!
I hope there is another series. I want to know if Hastings is H!
I'll lose all faith in human nature if he is. I suspect everybody apart from Ted.
I agree!
Hush people! I have yet to watch it. This is hubby and my BH treat, to watch the entire 5th series!
in reply to Soraya_PMR
I have learned to be tight lipped. My sister and kids dont like spoilers and i get shouted at if i accidentally do it. I dont watch LOD so we are safe....phew!
Line of Duty! The one series which keeps me awake! I feel now that I want to go back to series one and start all over again. Problem is, I can never get comfortable unless I sit bolt upright on a straight backed chair!
If you've got Netflix, the first four series are on there. I re-watched the first one with that great performance from Lennie James. I intend to re-watch the others too.
They’re on BBC iplayer currently. I rewatched all 4 before I start on 5.
Oh interesting... I'm always trying to calculate whether or not my Netflix subscription is worthwhile, and iPlayer is free... The BBC are deliberately trying to improve iPlayer as they're losing out to Netflix on the streaming front.
in reply to Marijo1951
Bbciplayer certainly isn't free. It costs me more than netflix.
Marijo1951 in reply to
I don't pay for it. I have a Roku box and the catch-ups for all the terrestial channels are free. Gosh, things are so complicated compared to when we were kids. We were the first family in my street to get ITV in 1956. I was so proud that I could 'host' my friends who wanted to see 'I Love Lucy'. I was all of 5 years old.
in reply to Marijo1951
It gets the licence fee. I dont really begrudge it most days, but i dont think of it as free. I have a nowtv Roku box - its got UKTV too so extra channels . I have Eurosport for my cycling (19.99) for the year. Plus i get things like ski jumping and other non football sports. There must be hundreds of programmes available, but i cant find much to watch sometimes. Typical and,yes, complicated. Sometimes i spend 20mins trying to find a series i was watching but cant remember which provider it was with. But glad we still don't have the 5 channels that existed before digital tv. So glad to get rid if my old videos and dvds.
But i still have a VCR and a dvd player. You never know. 😁
Marijo1951 in reply to
Oh I see, I hadn't thought of it like that since we have to pay the licence fee whether or not we use iPlayer.
stellafmdm in reply to
Its only free if you already have a TV licence
I intend to watch them all again, although I don’t have Netflix, but one series on DVD. I haven’t dared to go down the Netflix road as I already have lots of stuff which I’ve recorded on Planner!
in reply to sandrathecat
I can go through netflix not remembering a thing. Make the most of the sleep even though its not always refreshing. At 6mg my sleep broken and poor.
sandrathecat in reply to
Hope your sleep improves soon. Very best wishes.
in reply to sandrathecat
Afterall you are sandrathecat...😁
Excellent idea!
I'm facing the same problem at 9.5 It's complicated because I have Fibromyalgia as well though. I rang the rheumy helpline at our local hospital and the nurse I spoke to put it all down to the effect of my medication for fibro having worn off and I should go back to my GP to get that sorted. I'm not totally convinced. I asked a couple of times if the reduction in steroids could have that effect but she just came back to the fibro each time. The effect of the amitriptyline for fibro wore off a while ago and the sudden increase in tiredness and weakness coincided with the reduction in pred.
The trouble is that once fibro enters the equation there are a lot of doctors and nurses who have blinkers on ...
Join ‘The Club ‘ ,l feel just the same ! They call it the Deathly Fatigue on this forum.
Hope we all get through it in the end.
Schedule some relaxation (meditation style) after lunch or early evening?
Hi I'm the same, feel like a zombie😂 I don't fight it now just accept it as part of what we suffering from. Does annoy me as usually this time of year I spring into life after winter, catnaps and siestas my new hobby it seems😂😴😴
Yes it is tiresome, pun intended, I have to do all my doings in the morning, I arise at about 5:30a.m. After lunch I go down quickly, however, once in a while I seem to get a second, slight energy rise in the early evening. It is really bad right now, as I seem to have a relapse and am afraid I will have to increase the prednisone.
I am sorry to hear that you are having to increase your medication. Hope you find the right level for you and feel better soon. I am hoping to decrease down to 8mg after my monthly blood test this morning. Will get my results tomorrow. I am glad that we have this forum to share our experiences on as it does help when feeling a bit down. Very best wishes.
Yes, I do. The fatigue and tiredness is bothering me a great deal. Mornings are okay, but not later in the afternoon. 9 1/2 mg --- tried 9 which was a big problem. I need to stay with 9 1/2 for another 2 weeks.
Hope you feel better soon. I am hoping to drop to 8 this month so fingers crossed I will feel ok.
Forgot to ask. What were the differences you felt when you were on 9 as opposed to 9and a half?
More unwell and tired feeling, and increased pain in shoulders and lower back
It is amazing what 1/2 mg reduction can do
Thanks for sharing. Very best wishes.
HI, I'm new to PMR diagnosis and still on 15mg. and can hardly sleep at all !! 4 hours from 4 am to 8 am feels like a really good night. Don't feel inclined to nap during the day as the afternoons are when I feel most able to function and do shopping etc, and I'm sure daytime napping will also impact on the current very short nights. I go to bed at around midnight, read for 2 hours, get up and make a drink and snack, back to bed and read or listen to radio for a further 2 hours and then, if I'm lucky, fall asleep for a few hours. I'm sure it's not good for me, but don't know whether to turn to taking Pred in the evenings or at bedtime, rather than at 8.00 am, or to sleeping pills or anything else anyone can suggest. Before Pred prescription, my PMR was so bad I was sleeping 14 hours a day !! How can I find a happy medium?
Seems to be part of the course - think the Pred props us up and then when we reduce the dose we feel worse for a while .
in reply to Coriander000
Props us up 😂😂😂 was that pun intended (thread title)
Coriander000 in reply to
🤪 very observant x
Better than being chucked in the tumble dryer ...
My head has been spinning all day!
I feel pegged out today!
in reply to sandrathecat
We could hang about all day feeling like that
Sounds as though we both feel that we have been hung out to dry.
in reply to sandrathecat
😂😂😂
I have felt like that since day one of my sickness
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