Constant sleepiness!

Posted , 10 users are following.

When I first started on pred. I had dreadful insomnia, literally was only sleeping about an hour or so every night. Now, about 3mo in, I can hardly keep my eyes open throughout the day! I tend to take 20m cat naps frequently during the day and early evening. I've fallen asleep while trying to watch 3 different movies with friends/family.....soooo embarrassing, and they were ALL good movies that I'd wanted to see!!

My question is, has anyone else experienced this (1st insomnia then horrible fatigue), and if so, does it eventually even itself out?😕 These side effects just keep on comin'!

0 likes, 11 replies

11 Replies

  • Posted

    Hi lynda62707

    I had dreadful insomnia when initially taking pred. For me it lasted until i tapered down from 15mg to about 8/7mg then got overwhelming fatigue and tiredness it was not a natural tiredness it was very intense so much so you just had to give in to it. I found myself getting this strange overwheling tiredness around 3pm during the day and then nodding off early evening. This went on until approx 3-4months AFTER coming off pred. So in all i had the overwhelming tiredness for approx 10 months. Like you i would feel intensely tired that i stopped going out and going to friends or they coming to mine. Of course, that's all gone now and i am 'normal'. I do feel for you lynda having to go through it too, that was my case scenario, hopefully you wont go through it as long as i did. When you do get that intense tiredness you just have to go with it, do what your body is telling you. Having said all that, i did have B12 deficiency which would have contributed to the fatigue and overwhelming tiredness. Perhaps you should get a blood test for iron/B12 just incase you may have a deficiency. I do hope you can get through this phase and come out of it sooner than i did......kind thoughts and good wishes....

    • Posted

      As usual Mary, you nailed it!! My case exactly except for the fact that fatigue has set in much sooner with me. Lol....I find myself saying " I'm JUST gonna rest my eyes for a sec."....and boom! I'm out like a light for 20m or so! I just started a taper yesterday from 16.5 to 15mg. So we shall see. Crazy days!!

    • Posted

      So you reduced 1 mg a month? You said total of maybe 10 months for fatigue. You’re not on pred anymore? No more pmr? 

      I had such fatigue at 4 1/2 mg that I caved and went all the way back up to 6; just hadn’t realized how bad I felt.  Always interested to hear about others journeys.

      Lynda62707, I had insomnia till maybe around 7 mg; I still have it but not so frequently nor so bad.  Fatigue is more of a factor now. Since going back to 6 mg, it’s not so severe and my recovery from it is faster.  But I’m expecting it will return as I continue to reduce, even using dsns.  

    • Posted

      Hi Twopies

      Yes the fatigue was very intense from 7 mg to 0.5mg (7/8months)...and when i got off pred it continued for a further 4 months. It slowly faded out and that intense tiredness faded away. Thus, mysleep patterns back to normal although sometimes OA and PHN can keep me awake occassionally but that's a flash in the pan in comparison to pred days. I hope all you dear people get through all your pred side effects whether many or few....just roll with it..think positive as Mitchdon always says....have a great day each and every one of you even though you have a lot to deal with.....👍😊

  • Posted

    I cannot watch live TV as I go to sleep half way through programs which is really annoying so I tend to watch recorded programs. It is still annoying as I cannot remember when I went to sleep! I then have trouble sleeping at night.
    • Posted

      Lol...exactly! Same thing happens to me. I've missed so many news stories lately as when I'm "resting" my eyes during a commercial, I nod off completely! Ughhh

  • Posted

    Lynda,

    I too have struggled with the fatigue since being diagnosed 18 months ago. It is by far my hardest part of PMR. Yes, I have controlled shoulder ,hip and wrist pain but it’s been the fatigue that’s stopped me .  No matter what I have done whether it’s been an increased Prednisone dose or coffee it doesn’t matter. 

    The rheumatologist discussed Nuvigil with me but I’m hesitant with what patients have said about it’s sided effects making the feel foggy.so I guess we’ll just have to wait it out! 

    • Posted

      Man oh man! This keeps on getting better day after day!
    • Posted

      I would never agree to additional medication to deal with a minor and temporary side effect of pred.  One thing if you have to work with heavy machinery or do a lot of driving, but if we are just living normal quiet lives and can at least for the time being avoid those situations better just to catch the zzzzs while you can, and eventually try to get your sleep schedule back on track.  

      Many older people have a disturbed melatonin production and that can be reprogrammed back to a normal wake/sleep cycle. 

  • Posted

    Hi lynda62707

    One thing i forgot to mention in my reply re: 'sleepiness' i used to wake up with the most painful headache after the 3pm shot of anaesthetic...really that's what the sleepiness felt like an anaesthetic shot. So if you get the headaches after your sleep especially during day it not unusual.....happy days ahead for you just keep going, roll with it easier said than done i know! 🙄

  • Posted

    Lynda,  same problem with fatigue.  Lately I have been in the habit of taking three 20 minutes short naps during the day, although I sleep well at night. They do refresh to get moving again......

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