Newly diagnosed

[Sleepysusie]

Hi everyone, I was diagnosed with polymyalgia rheumatica 3 weeks ago and am still finding my way. I had never heard of this before and it took me a few weeks of pain until I approached the Doctor who actually diagnosed it quite quickly. One of the things I didn't realise is how it would effect my sleep. I seem to be awake a lot in the night and exhausted in the day. Do others find this, if so any tips how to get back to sleep 😴

[mustcarryon]

Hi slepeysusie

I am the same as yourself. It has been about 6 weeks since i was diagnosed and it takes time to get your head around things. the best thing i have done is joining this forum, the support is tremendous, the people great. I am aware of the fatigue this condition causes, your sleep pattern goes out the window.

Catch up with you soon.

[pollyg263 in reply to mustcarryon]

hi sleepy. i found rather than toss and turn all night i would get up and either read or go onto my laptop. till my eyes got tired. then go back to bed its much easier , because while tossing and turning. my mind would go to work on all sorts of stuff, and that dont help., but i am pleased to say after 7 years on pred. i am at zero and have been for 6 months apart from 78 year old aches and pains i am fine. good luck xxxx

[Bcol]

Hi Sleepysusie, welcome to this forum and the sleepy club. It will take a while to get adjusted to what will become your new way of life, but this forum is very definitely the place to be looking for and getting answers. I was diagnosed in June and am up around 02:00ish for my Pred. Others far more qualified than me and far more experience of PMR will be along during the day to help.

[Marijo1951]

Hello, welcome to this very useful forum which has been a life-saver for me.

One of the most common side effects of pred is insomnia, which seems particularly harsh when you're having to deal with the deathly fatigue caused by the illness. I started on 60 mg pred per day as I had both GCA and PMR and had insomnia every night for more than a year. My way of dealing with it was just to go with the flow and accept that it was difficult but it would eventually pass. I found things to do during the night - mainly watching silly old British films on YouTube and Talking Pictures TV, plus knitting for charity. I completed a number of things including an adult-sized blanket. Then during the day I slept on the sofa whenever I was overwhelmed with tiredness. Now my dose is down to 7 mg per day I have the occasional bad night, probably one every fortnight or 3 weeks.

However I do realise that it was easy for me as I'm retired and live alone. It must be far more difficult for anybody who has to go to work or has to consider other family members.

By the way, lucky you to have a GP who recognised your condition. You should treasure him/her as many of them don't know about it - even worse for GCA.

[Arflane97G]

Generally awake for an hour or so each night, generally about 2 am. Am married and retired so generally snuggle up to my husband and remind myself that I can have a nap in the afternoon. Has got better over time but always worse after a taper. Fatigue is an ongoing thing but I was diagnosed last September after a truly awful couple of months and sometimes I have to remind myself how much better things are now. Rest and look after yourself

[DorsetLady PMRGCAuk volunteer]

Hi,

Par for the course I’m afraid, it’s a question that arises regularly, here’s a link to just one post -

healthunlocked.com/pmrgcauk...

And another to give an overview of your illness with further links to dealing with fatigue etc - healthunlocked.com/pmrgcauk...

[suzy1959]

Hi namesake! I have been taking Pred. for over 8 years and the worst side effect has been the insomnia. A couple of years in, I was put on Amitriptyline and it really has helped. If I forget to take it one evening, I soon know about it! It is another strong drug though so each of us has to decide whether taking it is worth it.

[PMRpro Ambassador]

Can you tell us some more - like the dose of pred, when you take it and so on. The best place is to add it to your profile as then we can have a look and make more sensible suggestions. This isn't a one size fits all journey! Did you struggle to sleep before it was diagnosed?

[Sleepysusie]

Hi, thanks for all your lovely replies, it's a great help to talk to people in the same position. I am currently on 15mg prednisone which I take in the morning, I am signed off work at the moment but taking that week by week, I'm not sure how that will work out. I have tried not to sleep during the day today so maybe a better night ahead 🤞

[whitefishbay]

I always say PMR is a common syndrome that no one has ever heard of.

[MrsNails]

Hi Sleepysusie & Welcome 🌺

Unfortunately, one of the side effects of Prednisolone is that it can keep you awake!

It’s how you handle the wakefulness that can make a difference.

Are you taking your Pred in a morning? Are you relaxing before bed? It can also be a pattern as you didn’t sleep last night you can be stressed you won’t sleep tonight.

What are you doing during the wakeful time? Just laying there worrying won’t help, a warm drink & a boring book can help you drop off 😉

I had some manic times when l was on 30mg & Night Time OnLine Shopping became my favourite pass time & l had the tidiest kitchen cupboards in the world 😉 but l also hardly slept when l was on Dexamethasone plus Prednisolone but l was lucky enough to have friends/family around the world who were happy to spend time talking with me.

What dose of Pred are you on? It will improve as you lower the dose....

Take Care

MrsN

[Denbo51]

Yes I don't sleep well on steroids but after 5 weeks its coming back after dropping to 12mg from 15mg