Does PMR affect your sleep pattern?

[Littlejan22]

Another restless night - since starting with the symptons of PMR in October I my sleep has been all over the place from falling asleep at 6pm after a day of fatigue, to sleep 4 hours and then be awake all night, I on Pred down to 10mg and wondered if anyone can advice if this illness affects sleep patterns? After 3 months of utter mixed up sleep I am desperate to know?

[SheffieldJane]

I am afraid that this sounds pretty typical to me. I do better on the days I have fresh air and exercise.

[Littlejan22 in reply to SheffieldJane]

Morning thanks for the reply didn’t think we could exercise I see my rheumy for the furst time on 11th January having been an active 55 year old doing yoga cycling and swimmyfirvyeaes I have done nothing since October

[DorsetLady PMRGCAuk volunteer in reply to Littlejan22]

Don’t think we’ve ever said don’t exercise......we’ve probably said repetitive, circuit training type exercise is a no,no - gentle exercise is good, and necessary.

Have a look at this for all things illness & meds - apologies if I’ve linked previously -

healthunlocked.com/pmrgcauk...

[Kendrew]

Hi Littlejan22. Yes! Pred does frequently upset your sleep pattern....and others with more knowledge will probably be along to explain why. I have been on pred for PMR for almost 2years now, and my dose has constantly fluctuated. On higher doses particularly, I've experienced restlessness, full on insomnia when I've literally been awake all night, nights when I've nodded off ok at bedtime, but then woken at anything from 1am to 4am and nights when I've slept well but repeatedly woken at 4am. Initially, I fought all this, feeling if I didn't sleep a full 7 or 8hrs I was not managing my illness well enough or because this wasn't the norm, it wasn't acceptable and I MUST find a way to secure a full 7 to 8 hrs sleep a night! I soon realised that although sleep is essential for supporting our recovery (from any illness....not just PMR/GCA) I'd cope a lot better if I just accepted that disrupted sleep patterns would be my 'new norm'! Now, I do whatever I can to encourage a good night's sleep, but accept that often I'll be awake when most people would normally be asleep. I'm currently not working so don't have the stress of needing to get up in the morning, (although I don't lie in and I prefer not to sleep during the day unless absolutely necessary.) So, I just try to go with the flow. It's very frustrating, and unfortunately...... all part of this journey.

[Littlejan22 in reply to Kendrew]

Thanks I to have been desperate to get the mandatory 7/8 which is seen to be the norm but going with the flow sounds much easier than fighting it, I am university lecturer fir Derby and Solihull and only work 2 days a week now so less stressful when I can’t sleep, fed up of tip toe around the house as my husband works full time and I try not to wake him. He struggles to believe how I keep going with so little sleep, it certainly is a journey of discovery every day Kind thanks for your comments I do feel lifted to know others are going through the same with this condition and I’m not going mad

[Kendrew in reply to Littlejan22]

When I'm working, I'm teaching in a nursery class in a primary school. High dose of steroids are currently not allowing me to go in due to immunosuppression, and pleased I'm at home as all my nursery colleagues are now ill with covid-19!......don't anyone dare try to tell me that young children don't transmit it!! 🤨🤨Knowing I don't need to go in to work has taken all the pressure off my unsuccessful and stress-inducing efforts to get to sleep each night, and as much as I didn't want this to happen.... my husband now sleeps in the spare bedroom. Again, this means I can get up, wander around, read, fidget!...... whatever I need to do to until I can settle again, and I'm under no unnecessary pressure. I hope you find something that helps and wish you all the best.

[pomeranion in reply to Kendrew]

This is so helpful. Have been experiencing the same. I just keep putting all this pressure on myself to be normal. Just another aspect of the disease? PATIENCE!!!

[Kendrew in reply to pomeranion]

Accepting a new normal for a while will make a huge difference to how you cope. This condition has and will change us........what we can do, how we live our lives, what we eat, how we exercise, how much rest we need....even how we think! So, it's about adjusting and adapting to all that, and often it's just small changes that are required. These may feel quite 'foreign' to what were our normal patterns of behaviour, but what's important is that we continue to live the best lives we can and maximise our potential for doing so.

[Maisiek]

Sorry to hear this : yes I was the same at that dose : I managed with an afternoon nap but my brain was so foggy , Prof Dasgupta prescribed Amitriptyline : however a Christmas present pillow spray and the fact that I’d got down to 5 1/2 mg meant that I didn’t need it and am sleeping much better . Good luck!

[Littlejan22 in reply to Maisiek]

Thanks it’s early days hoping it will get better just joined this group and so glad I found you all as I don’t know anyone else who knows of it so I do feel a bit better

[Kendrew in reply to Littlejan22]

This is an amazing community where you've access to some of the most informed and knowledgeable people who will offer reliable and trustworthy advice. You'll also find friendship, support......and some laughter too along the way. Welcome. 🙂

[Hidden]

Morning Littlejan22! Like many others here I suffer from disturbed sleep too. Was worst at 15mg, is improved now at 9mg but still in a pattern of waking at around 2am, similar to Kendrew, and struggling to get back off again. I usually do get back off but always drained in the morning and start work at 8am (thankfully from home). I would love just one night of full sleep 😴 However I am happy to accept the trade off and would not want my symptoms back again... 😊

[MrsNails]

Hi Littlejan

If you ever look at the Forum during the night, you’ll find the Wide Awakers!

PMR affects your sleep but the Pred can do as well, especially when on higher doses.

Falling asleep at 6pm is something you need to break, are you still working or at home? If you’re at home then it’s a bit easier as you can schedule yourself a nap/rest after lunch, my recommendation is to rest on your bed even if you don’t sleep but try to really relax. Some people benefit from Amitriptyline taken around 7pm as it helps relax the muscles & aids a better nights sleep 😴 l’d taken it pre PMR for a shoulder injury & it works for me.

Good Luck, Keep Safe & Well

MrsN

[Littlejan22 in reply to MrsNails]

Thanks I have been napping after lunch and sleeping till 7am in the morning now, I am lecturing from home so it is easier for me at the moment, also now reduced to 9 mg on Pred so my sleepless nights are not so bad maybe one in seven thank you for the advice Janet x

[Mary63]

I wouldn’t fight an afternoon sleep. I found I often got a better night’s sleep after a pm kip. Strangely! Now I am down to 5.5mg I sleep better. But I am always on the lookout for a poor night or three as this, for me , is one of the signs my dose is getting too low.

[PMRpro Ambassador in reply to Mary63]

I put it down to the childhood warning from granny: "He's past tired ..."

[Littlejan22 in reply to Mary63]

Thanks there’s soMuch to learn ive ordered a book on it hoping to get ahead of the game

[Coffeebeans]

Oh sleep can be all over for me.

I'm restless after a dose change, hot sweats and generally uncomfortable. When at a dose for a while I tend to be out like a light at 10pm and sleep like the dead until around 4-5am.

All sorts of combinations are pretty normal for this. Just important to get rest when your body says so if possible.

CB

[Littlejan22 in reply to Coffeebeans]

I need to rest but find the ores gives me wings and I suffer after fir it thanks

[Slowdown]

Several things contribute to waking up in the middle of the night including worrying about it; the need to get up for a pee, the timing of taking prednisolone to coincide with the inflammatory cytokine activity around 4a.m. Sometimes splitting your dose of pred 2/3rd morning, 1/3rd evening can work, it's all in the timing dependent on whether you have coated or plain pred. I sleep better when I've been in the fresh air, had a walk, learned a bit more tai chi - exercise doesn't have to be dumbells at dawn. I have a lie-down listening to R4 drama at 2pm and often have a 20 minute nap which is refreshing, gets me over the mid-afternoon slump.

There are also theories that humans in pre-industrial times were used to a 'first sleep' of around 4 hours, an awake period of a couple of hours when they would get up, have conversations, sew, read, chopping wood(!) and then go back for their 'second sleep' for another 4 hours. If interested see sciencealert.com/humans-use.... At least it's something to read in the middle of the night....

[PMRpro Ambassador]

PMR itself certainly disrupted my sleep during the 5 years I had it with no pred. I have mixed experiences now on 15mg pred - one disturbed night, one good night. It was much better on lower doses of pred than now but a lot of the current sleeplessness probably has other sources as well.

No-one said NO exercise - just as we don't say NO carb for diet. Walking is ideal, just be careful you don't try to do too much so that you suffer the next day. Find your level - by starting with short, easy walks and building up time until you find where is the difference between OK and sore next day. Always have rest days at the start. just in case. Once you have an easy maximum time you can start to build speed and intensity - but also building up slowly, not suddenly expect to climb mountains! Personally I found uneven surfaces too much - the muscles find it too hard work and protest. And when testing to start with choose routes where you can bail out or be rescued easily when it goes pear-shaped!!

I think it is also profitable to pre-empt the brick wall of fatigue in the daytime by having a siesta, whether you sleep or not. Trying to fight tiredness to stay up to a "normal" (former) bedtime often makes it worse.

[Bcol]

Hi Littlejan22, I think you will find there are quite a number of us inhabiting the Forum during the early hours so there is nearly always someone here for a chat/discussion/whatever so you don't ever need to feel you are alone. My apologies for missing your post this morning. I learned many years ago (1990's) when I was diagnosed with OA that with sleeping problems there is no point in lying in bed tossing and turning and trying to get comfortable, failing, and then getting all hot and bothered/stressed because of it. For me it was/is better to get up, have a wander, sit down, find a totally different position, have a brew, hot chocolate, read, watch the TV or anything else that helps you to relax. That even applied when I was working. Was much nicer when I retired though. Having had that experience, the problems of PMR and Pred, when they arrived were not really a problem to me as they were already part of my normal!!! existence. So getting up at 02:00ish for my Pred, which seems to work well for me is fine, I don't set the alarm, I'm just awake around then and if I slept through its also not a problem (only done it once). I also have two dogs which I walk every day (only once a day now, of course!!)which gives me straightforward non-strenuous exercise. Try and work out what works and provides the least stress for you.

[Littlejan22 in reply to Bcol]

Thank you fir your kind comforting words now I feel better knowing I’m not alone with this illness

[piglette]

My sleep patterns have been all over the place since starting pred. I never seem to sleep for over 2 hours at a time and often just half an hour. The trouble I can go to sleep when there is something really good on TV or radio but when I go to bed I just lie awake for hours.

[123mossie]

Welcome to the night owl club. Pred certainly makes my insomnia worse. I can fall asleep but will wake anything from 1 to 3 hours later. Occasionally I might get 5 hours I wish I knew how or why. Cocoa at 3 am quite often, bbc world service too although I know I shouldn’t do that. I’m on 5mgm pred.