I am currently on 8mg Pred and managing the pmr for now. However, I have been waking up every morning at between 4-5 am and can’t get back to sleep. I don’t have pain but just a bit of stiffness when I wake up. I have been on Pred for over 2 years and this is a new issue.
I know that the inflammation is produced in the body around this time but I am wondering if it’s the steroids causing this or the inflammation. Has anyone else experienced it?
Would welcome any advice please
Thanks in advance 😊
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Charliepeace
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You should take with or after food….which is okay at breakfast time ..but if you take during the night then you obviously don’t want a lot to eat, but you need enough to stop it irritating stomach. So a small snack is ideal.
Me too! Over the 7 years I have had PMR and then GCA my waking times have varied but I must say 4 am takes the prize for the most usual time. A meditation guide once told me that it was the time God really listens. Oddly comforting.
You are right about the flood of cytokines ( inflammatory substance) entering the blood stream at about this hour. Have you tried taking your Pred with yoghurt or similar at about 2am? This can head off stiffness and or pain at the pass and can enable sleep to continue.
Over the years I have learned not to panic about the insomnia and pass the time quietly and calmly. There are lots of threads with tips about dealing with sleeplessness. I usually have a nap after lunch that deals with the inevitable fatigue. It is a normal symptom of autoimmune diseases and Prednisalone. If it becomes really troublesome the doctor can prescribe Zopiclone or similar. I find Magnesium helpful.
Like Sheffield Jane, I wake very early but no longer stress about it and just go with the flow. I'm fortunate in as much as I don't have any pain or discomfort...I simply just wake up early.
I'll lay quietly in bed relaxing and probably just listen to the radio through my earphones. Sometimes I'll read a little while or make a hot drink. The one thing I've learnt not to do though is fight it. It doesn't help and frequently I eventually drop off to sleep again naturally as I'm listening to the radio, or reading. Nothing more alarming than waking with a book on your face!! 😄
I'm aware that my strategies are only helpful for me, and others will have sleep issues that are more complex than mine and will therefore require further interventions.
It's a common problem for us all here but not an easy one to resolve.
I too just lay there quietly trying not to disturb my husbands sleep. I may have to decamp to the spare bedroom where I can do as you suggest. That sounds like a plan!
I think it is most likely the PMR inflammation - and possibly you are on the borderline of the pred effect lasting the full 24 hours.
Of course once you get used to waking at a given time, then it tends to be a self-fulfilling prophecy! Then you start to worry about it and it gets worse. Accept it and either learn relaxation techniques or put the light on and read for a bit and go with the flow. This too shall pass ...
I wake up a few times in the night and just rest, I try to con my Fitbit into thinking I am asleep and count the tic tics of the click. I soon fall back to sleep !
4am is a strange time for me too. Either I'm still awake then and fall asleep soon after or I wake up then. So I've started taking my Pred around 4am and then sleeping until I wake naturally which seems to be between 8 and 9am.
4am is my usual time for waking, sometimes l am lucky enough to get to 5 am. I have got used to it and like the others say have a nap in the afternoon and try to listen to a meditation or talk through headphones.
I’ve had a few 4am games! Like the others I’ve learned not to fight it. I’m lucky I don’t work now though. I know if I did I’d be stressed to death about it!!!
In my case the 4am alarm call is normally caused by my bladder. However, despite emptying it, and although emptying it does help to temporarily reduce any lower back pain, once awake I then find that I stay relatively conscious till around 6am, when I doze off, and don't wake again till around 8am. I've also found recently that the 4am call seems to coincide with me feeling very hot and sweaty, sometimes waking up to find that I'm stuck to the bedclothes.
Sometimes I have to get up early, as I did this morning, due to discomfort at the base of my spine, right on the sacroiliac joints. No sleeping position is comfortable when this happens, and I end up giving up on sleep altogether. This pain has been around since I first got PMR, but the Pred helped to dissipate it for years.
Now though I find that it's an increasing problem that can only be overcome by getting up out of bed and going downstairs to sleep in my armchair with my feet up. When I do that the lower back pain seems to fade away and I'm able to doze off quite quickly.
Interestingly, many years ago, a friend of mine told me that she used to worry about lack of sleep, but then she decided not to worry about it, and found that her sleep improved. Mind you, she was a psychologist, so was probably better informed about such things than most people.
What works for me is to take an antiinflammatory painkiller before bed - I think I finally have got the sacroiliac pain thing just about under control after a discussion with the Pain Clinic specialist. Paracetamol is useless
PMRpro, I find that Paracetomol is useless as well and I can't take Ibruprofen at all, so I take Paracetomol tablets with Codeine in them, but I have to limit that because of the constipation they cause.
You need to take the laxative with the codeine! I can't take codeine - makes me ill. I have been given an old NSAID the Italians seem to like, comes as drops to mix with water. Seems to work well.
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