Insomnia

[or01ah]

Hello folks here I am at 02.47 on here as only slept a few hours so far. Was really tired when I went to bed but I cannot get a full night of sleep. This has been the case before PMR usually my waking time is 04.00. Any advice as always is so welcome. Hope everyone else is snoozing and toasty warm right now.

[Dibs]

Hi or01ah

I fell asleep in the chair watching tv, came up to bed and bang, not able to sleep. This is the same every night. I try going to bed earlier so as not to fall asleep in the chair, I have tried milky drinks, etc.

My rheumy wants me to take amiltriptyline(sorry can't spell) to help with the pain so as to help with the sleep. I'm already on bru trans patches and occasional tramadol or co-codomol to top up. I very much advocate meditation and find this relaxes me but am still unable to sleep properly.

Some nights I do not make it to bed as the chair is more comfortable but I would like to get back into the routine of bed.

Sweet dreams for when you do nod off

Debs

[steph1]

I think there is alot of us that dont sleep all night, i take tramadol and sleeping pill and still dont always get a good night sleep. So i.know how you feel

Steph

[Celtic PMRGCAuk volunteer]

Hi orO1

I do hope you finally got back to sleep. I really didn't manage to find much of a remedy for the sleepless nights in the early days of the illness due to both the high dose steroids (40mgs) and the discomfort which had me repeatedly battling through the business of turning over repeatedly from one side to the other.

A daily walk, even if only for 10 minutes, in the late afternoon can sometimes help, as can avoiding stimulants such as coffee and chocolate. Some people say that soporific foods can aid sleep - lettuce and turkey are two that come to mind - and, in fact, I know of a lady (non-sufferer) who when she finishes her work on the computer in the evening, has a lettuce sandwich before going to bed each night!!

The sleeplessness does improve as the dose reduces but meanwhile I think the only real answer is to catnap during the day as much as possible. "Sweet dreams" indeed!

[ritter]

Hi every one,never been a good sleeper to start with but since diagnosed with GCA last Feb and started off on high dose of steroids well what can I say don't know what its like to get a nights sleep now,still on high dose,and my docs just put them up again two 25mg,s today,so will not be sleeping to night,but as every one says it best to catch up during the day mind you I never practise what I preach and my children go mad with me,but its very hard to go from very fit to very ill overnight.well folks since upping my steroids 3 hours ago,my back pain has ease off very slightly and as you all know it feels a lot better just a slight improvement,I do hope you all are not two bad today.Ritter

[adelle]

Hi All

Reading these I feel really lucky, as my problem is staying awake. I could sleep all day and night if I had the time. Am now down to 9mg preds.

Adelle

[pennyw Administrator PMRGCAuk team member]

Hi All

I saw my rheumatologist last Monday 28 Jan and she thinks now I probably have fibromyelgia as well as pmr. She prescribed a dose of 10mg night Amitriptyline rising to 25mg if needed. I took the diagnosis she wrote to my GP surgery to issue prescription. On Friday last week I was told the GP needed to see me before issuing prescription. This morning I finally saw GP.

He said he thought it waste of time to start on 10mg - I could if I wanted to - so gave me 25mg tablets which he said I could cut into two if I wanted. If anyone else takes Amitriptyline what dose did they start on? It is so frustrating to find the GP recommending something different to the consultant.

I mentioned to the GP a few people locally who had PMR were meeting at the end of the month (in Dartford, Kent if anyone is interested). His response was 'yes sometimes these groups can be useful ... now back to the prescription.' Some while ago he told me there were 200 patients in our surgery with PMR. Say no more.

[DorsetLady PMRGCAuk volunteer]

Hi or01ah,

When I first started on Pred - 80mg, then down to 60mg I was waking about 2.30am every night. Once I got down to about half that, it was much better, maybe I was just lucky. There are some things you can do for yourself though - get into a routine. Have milky drink about half an hour before going to bed, have warm bath (not too hot!), relax before going to bed by not watching anything too exiting on tv, or taxing the brain like doing a crossword. Don't watch tv in bed! Try blackout curtains. If you do wake up early hours, try counting down from 100 to zero, if you make a mistake you have to start again! You'll bore yourself to sleep if nothing else. My husband goes through all the pubs he used to frequent in his home town when he was young and single, or round all the people who used to live in his village. It seems to work for him! In the middle of the night anything's worth a try! Good luck, Dorset Lady.

[or01ah in reply to DorsetLady]

Thanks Dorsetlady and others. I do have a routine only drink decaf tea, not keen on milky drinks. have no tv in bedroom and always read in bed. Going to try chamomile tea next when someone does the shopping. Encouraging to read when steroids are reduced it may change. Fingers crossed. I never catnap during the day so least that is something.Best wishes.

[suzy1959]

I too am battling with insomnia. I had this before being diagnosed due to the pain of turning over in bed, but now, it seems to be a combination of aches and a higher dose of pred. (20mg). I don't struggle too much with getting to sleep but I wake up every hour, every night, so don't get any deep sleep at all. I am working 4 days a week, so no chances to cat nap either. I am really hoping that a reduction of pred. will help. Pre-diagnosis, I was prescribed amytriptyline which did not help at all. I was always a brilliant sleeper before PMR....

[or01ah]

Hello suzy1959 it is not pleasant is it and a long night. I seem to be lucky as the pains have mostly gone. I am now on 30mg Pred for another 3 days then down to 20mg for five days.

I also have no problem getting to sleep. I have always been quite a poor sleeper but this is the pits! Were you off work for quite a while after being diagnosed? Do you have periodic sweats? You must feel very tired working 4 days. I work full-time in education teaching and have been off for two weeks now. I don't feel I can go back next week yet. Sending some sleep vibes

[Hidden]

Hi or01,

I realise this situation is not at all funny, but as one who has been on 30mg of pred twice in the last 2 years, I can't help but giggle. I remember it well! 3 hours a night on a good night and the sleep, well considering it was often filled with ghastly dreams, one could hardly describe it as that.

You must take into consideration that pred is a very powerful form of adrenalin - your system will be on over-drive.

As the dosage is reduced, you will find that sleeping will become easier, but in the mean time, rest during the day to make up and take things real easy and, above all, don't worry about it.

My way of dealing with sleeping well is, never go to bed unless you feel tired out no matter what the time is. After all, you are ill and your normal life style has to change until you are feeling better.

By the way, an hour on the internet and a big glass of 'red' work wonders for me.

Pats.

[or01ah]

Hi Pats I am giggling at the wineternet solution Last night I actually slept better think it may have been due to two short walks and numerous Qigong exercises for insomnia. Resting now and very little pain today apart from a sore. thumb. Will see what happens tonight as last night waited til I was very tired.

[Hidden]

Hi or01ah,

That's the ticket. Stay up until you feel you really need to sleep.

By the way, I must investigate Qigong, sounds rather interesting.

Pats

[or01ah]

Hi Pats

Yes do look into Qigong I practised it years ago when I had a bad back and boys were wee. Helped me cope with pain and sorted energy levels. I had 3 children under 3 so needed mega energy whilst working part-time.

Just back from doc signed off another 2 weeks, 20mg pred for a month then blood tests. Got Alendronic acid too. Did not sleep well last night only 3 hours, wrist pain and upper arm today so rest rest rest. Hope you are having a good day and the sun is shining with you. it is in Orkney.

[suzy1959]

Sorry, or01ah, I've only just seen your questions- unfortunately I am a self-employed counsellor and get no sick pay so have to keep going ! I do give myself regular holidays but the income has become even more important since my husband was made redundant around the same time as I got ill about a year ago. Still no replacement income / job for him yet . Yes, I am getting a lot of hot flushes too which affect the sleeping and I seem to be feeling unwell at the moment, possibly due to a reduction in pred. (?withdrawal?) and also because I fell down the stairs a week ago while wandering around the house at 4 in the morning and the bruises are horrendous! What am I like!!??

[Hidden in reply to suzy1959]

Hi Suzi,

I lost a very good, well paid job because of this illness. It involved too much physical work for my rheumy to even contemplate prescribing the dose of steroids that would have enabled me to carry on. I had to retire - it cost me so much. Not just in money, but in friends and the 'cudos' of feeling so valued as an individual. I guess many of us are in the same situation.

I really sympathise with you regarding the bruises - I've had some real beauts - one was 9 inches square. Luckily, my bones were strong.

What are you like? You're wonderful - don't ever forget it, and don't lose hope.

I take a rather large glass of 'red' to help me sleep - it does the trick.

Pats.

[or01ah]

Hello Suzy

Sorry to hear of your financial troubles I do hope they improve. Nights are awful eh? Last night was a bit better I went for a sauna, Jacuzzi and steam yesterday that maybe helped?

Bought lavender oil yesterday and chamomile tea on the go now. Sending some zzz's your way. Good luck.

[Hoogli]

Such alot of helpful advice. Thanks to All.

Heard somewhere about the effects of eating 2 kiwi fruits, 15 mins before bed time. Apparently tests show it can aid sleep. It's there to be tried. Also, take your prednisolone in the morning. Several reasons, keeping the pain at bay so you can exercise,feel comfortable etc. use up your energy levels to enable you to sleep pm. As I said, you can only try and see if they suits you.

[or01ah in reply to Hoogli]

Hello Hoogil Kiwi is interesting I actually have some chopped up in the fridge. Pineapple I have read helps reduce inflammation so having it too. Have found I sleep better now on 20mg Pred, have very little pain and am feeling so much better. Three times a week I have a sauna, steam, jacuzzi and force myself in the cold shower I am sure this is reducing inflammation and the need for paracetamol. I do my Qigong daily and try to meditate and walk daily. Back to work next monday phased return so see how that goes. Have also gone wheat, dairy and gluten free as read people with Fibromyalgia sleep better when they cut gluten from their diet. The other thing I do is massage geranium, lavender and a base oil into the muscles that ache. When I don't go for sauna etc I put the oils in the bath. If any of this helps others that will be good. Camomile and green tea also good for calming and getting rid of toxins.