sorry for bad post can't sleep much with pain tired all the time

[yusuf]

[grace1]

hi yusuf i,m the same i can,t sleep at night i get about 1,2 hrs every night then i sit up the rest of the time ihave been like this for ayear the doc says it,s part of the illness. isleep in the day time for about 10 ,20.minutes have tryed sleeping tables still no good i think i have got used to it now.hope you can get some sleep soon. grace1.

[yusuf]

thankyou grace1 i had 1.5 hours sleep today ,had to go to doctor i have chest infection again this pmr and pill don't help much thank you again will keep in touch

[GreyOwl]

Sometimes I can sleep for 6-8 hours but then I go through spells when I can barely sleep for an hour....I'm in one again and not feeling good......don't want to try sleeping pills as they can be addictive, I hear.

[Polywotsit PMRGCAuk team member]

Hi Yusuf, sorry to hear you are having such trouble sleeping. Both the illness and the steroids can mess about with your normal sleep patterns. Prof Kirwan at Bristol has discovered that in PMR patients, the levels of inflammatory enzyme are highest in the small hours of the morning, which might explain why some of us wake up in agony in the middle of the night. He is trialling Lodotra, a slow release version of the steroid which might help in future, but at the moment it's not generally available.

In the meantime, at our last AGM, physiotherapist Billy Fashanu told us that one of the first things he needs to do as a therapist is to help people get enough rest. Sleeping on an old mattress may be adding to problems with sleep. You need a mattress that is comfortable, not too hard so that your body can't sink into it at all, but not too soft that it doesn't support you. If your mattress is more than 10 years old maybe you could consider getting a new one. It's an investment in your health. Billy says just use one pillow. To this I would add - take a dose of paracetemol when you go to bed, whether you think you need it or not. Drink a milky drink or a cup of chamomile tea. It might not do any good but there might be a psychological effect! If you are awake in the middle of the night, try getting up for half an hour (I find this very hard because I feel so tired, but it does seem to help). Try going downstairs, making a drink and then going through the whole going to bed ritual again. And this is the most bonkers thing of all - I found cuddling my grandson's teddy bear very comforting in the middle of the night! (Don't tell my husband).

[Dibs]

Hi Yusef, I sit up in bed to sleep with six pillows and a 'V' shaped pillow as I am unable to get out of bed if not and also I cannot lay on my side or back for the pain. It makes for a long night, but I get up every night between 3 or 4, go downstairs, let the dogs out, have a stretch and then try to get some sleep. I sometimes can't make it back upstairs and stay on the sofa with the dogs for company. Like Kate it makes me very tired the next day and I have been known to fall asleep at my computer in work. I have been stopped driving with my eyesight loss so it doesn't affect me that way now otherwise I would be in a right state.

I have now bought an iPad and play solitaire and quizzes throughout the night as its easy to pick up when the sleep won't come and it helps with the pain. And of course there's always this forum.

I don't know what the future holds but not having slept through the night for the last four years certainly take its toll and of course doesn't help with the pain as your body heals itself through the night when sleeping which we don't get, vicious circle.

Anyway if your not asleep after reading this, take care and my thoughts are with you all.