Sleeping

[Sandra1959]

Hi I have just been diagnosed with per and currently on 15 prednisolone , has anyone else had problems with sleeping too much ie; I am not hearing alarm on morning and so tired I struggle to get out of bed help !!!!!

[Sandra1959]

Oops sorry per

[piglette]

I think I need a lot more sleep than I used to have. I would have about six hours a night, but probably need about nine now. I have trouble getting to sleep and then trouble waking up again.

[Sandra1959 in reply to piglette]

Thanks I thought was just me going deaf, totally cannot believe I slept for almost an hour with alarm going off sandra

[Celtic PMRGCAuk volunteer]

Sandra, welcome to the forum although I'm sorry to hear you have just been diagnosed. Unfortunately, it isn't at all unusual to feel especially tired in the early days of PMR, due to both the inflammation and to the treatment itself. There's no easy answer in these early days except to 'go with the flow' and have as much rest as you need. Even when you have better days when you may not feel as tired, don't go overdoing things just because you feel you can - you still need to give the steroids every opportunity to do their job of getting and maintaining control over the inflammation. They are not curing anything but just damping down that inflammation whilst PMR runs its course. You will, no doubt, have lots of questions so just ask away and there will always be someone around to try and help from their own experience with PMR. I do hope you will soon start to feel much better.

[Sandra1959 in reply to Celtic]

Hi Celtic and thank you , that makes me feel better knowing it's not just me, I have gone from waking with pain so many times through the night to not being able to get out of bed, and I do agree ( as I have found out ) the meds make you feel so much better until you overdo it. Take care sandra

[olive2709]

Morning . Do you have to get up to alarm if there are days when you don't. ie Is alarm more habit . Don't set it time to look after you and rest

[Sandra1959 in reply to olive2709]

Hello

I am afraid for 10 days out of 14 yes I have to get up to an alarm and for 6 of these days it is my alarm at work to be on duty and I even slept through for over half an hour after alarm.

[Charlie1boy]

Hi Sandra,

No doubt preds mess about with sleeping patterns - certainly in my case. Being so tired all the time, I now sleep about an hour every afternoon (if I can), then even so I can sleep really soundly all night. At other times, I find I wake up too early, and can't get back to sleep again. This has been the pattern of my life since I was diagnosed in dec 2014.

I think, initially, it was the relief from all the pain that helped me sleep well to begin with, though I did have to get up at 2 or 3 am to take the preds for a while.

You just don't know what's in store, so, as they say, just go along with what your body tells you.

Good luck!

[Sandra1959 in reply to Charlie1boy]

Hi thank you yes with in reason I can try that when I am on my days off , it's like I am trying to catch up on sleep I lost with pain before prednisolone .

Sandra

[Charlie1boy in reply to Sandra1959]

Yes, I can well understand that, and sympathise with you. PMR pain is not like anything I have experienced in my life before. I have had two hip replacement ops, but PMR pain is much the worse!

It will get better - I promise?

[Sandra1959 in reply to Charlie1boy]

Thank you .

[PMRpro Ambassador]

During the 5 years I had PMR without pred I was in bed by 9pm at the latest and still struggled to get out of bed at 8.30am! The pain often woke me in the early hours and it was difficult to get back to sleep. Once I was on pred the quality of my sleep improved - but I still need a lot of rest. I'm awake at 7am thanks to my husband's internal clock and desire for early morning tea but struggle to get up before 9am having gone to bed about 10pm after the "meds round".

I don't rest during the day but it is something that helps many people. Someone on another forum has just tried it having asked about falling asleep and being told to try a nap. He says that 30-40 mins left him really refreshed. An afternoon nap planned into your day often gives you far more effective time through the day. You don't work or function well when you are fatigued and part of the management of PMR is to rest and pace yourself. Pred takes care of the inflammation, pain and stiffness - it has no effect on the fatigue, that is due to the underlying autoimmune disorder that causes PMR which isn't touched by pred. That is up to you.

[Sandra1959]

Hi and thank you , yes before I was diagnosed my sleep pattern was terrible because I was awake lots with pain.

I could not understand why I seem to have gone deaf when I am asleep

Sandra

[PMRandRA in reply to Sandra1959]

I don't wish to sound alarmist in any way, but according to the NHS Choices, extreme tiredness is one of the symptoms of Giant Cell Arteritis (you don't need all of the symptoms or even the more common one/s in order to have it) and I read somewhere else but can't find it, that deafness can be a symptom as well.. So if I was you, I would hot tail it to the Doctor and demand an emergency appointment, or go to your nearest A&E. You will need more than 15mg of Pred for a short while to get rid of the GCA if, indeed, you do have it. GCA symptoms must not be ignored or left till tomorrow. Apart from which, it is far better to know than to wonder.

Here's a link to NHS Choices

nhs.uk/Conditions/giant-cel...

[Sandra1959 in reply to PMRandRA]

Thank you I'll check out site .

[angelone2]

Most people on Preds usually have the opposite problem, not being able to sleep.

[Sandra1959 in reply to angelone2]

I went through the not sleeping with pain before prednisolone .

[tangocharlie in reply to angelone2]

I envy all of you who sleep soundly - I struggle to sleep, even though I'm really tired. It makes no difference what time you take the preds, once they're inthe system you're just topping the levels up.