Fibromyalgia Action UK
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What do you do ??

Hi everyone,

have been awake now for about an hour, I have been trying to make myself stay in bed even if I am awake in the hope that I may doze off for half an hour or so and try to break the cycle of waking and getting up at silly times,but this morning I had to get up as my hips were hurting if I was on my side and my back and neck were hurting if I lay on my back. I have just been sat in the garden having a sneaky cig and a hot drink,the cats are all roaming about because I have disturbed them and they think it is time for breakfast. I know a lot of you have problems with sleep and was just wondering what you do when you are up in the early hours of the morning,I usually just potter about,if there is any washing up to do I do that, make my partners packed lunch etc...While awake this morning at about half three I just had a vision of hundreds of other people mooching about at this silly hour and that made me wonder what every one does with this time,do you have some craft you do,reading ,watching TV. Just interested in what you all get up to.

love and hugs

Bessylooloo xxx

18 Replies

Good morning. I see that I am not the only one up. I consider myself truly blessed that I do not have to conform to certain sleep hours in order to work. I couldn't survive it! I seem to sleep in one week blockes.

I go 7-10 days of insomnia, sleeping 3-4 hours out of 24. Then it switches. I go 7-10 days of only being awake 3-4 hours a day.

The only thing that has saved my sanity is totally giving up on trying to control when I sleep!! If the body wants to sleep right before time to make dinner...then ny hubby makes dinner & I get in bed. If he goes to bed & I am awake...then I stay up.

What do I do at these odd hours? Anything I would do in the day...except clean the master bedroom & bath, or vacuum.


Oh...I forgot to include that I did take up a few hobbies. I started beading jewelry. Necklaces, earrings & bracelets. It is very relaxing & I have grown good enough at it that I am now selling jewelry sets for $35. I used to write short stories. I actually won a State of California prize long ago.. So, I am taking an online class to write a novel. I plan to tell my life story...what a soap opera that will make! Lol. I am also a photographer & am sorting & scrapbooking 45 urs worth of pictures.

When I hurt most though. it is still tv though.

God Bless!


Have you got any mess to sleep?


I meant to write medicine.



I was taking amytriptiline but because of the bad side effects had to stop them,they really helped with sleeping,so at the moment I don't take anything.

Best wishes




I was taking amitriptyline also but had bad side effects. My GP then switched me to nortriptyline which is similar but has less side effects.



Morning Bettyloulou

I am a fellow moocher or three am zombie, Ha ha I awake every day at three sometimes I just lie thinging about sleeping and usually becoming more awake, Other times I too potter around the dogs look at me and knowing I am barmy they go back to sleep while I have a cuppa. Then the routine starts again back to bed for another hour that will make 4.45 ok can I get up now can I? Okay 5.ooam out of bed clean teeth and away I go for the day ahead ready or not.............xgins


this is my second time up to day, also got up 4 hours ago, stayed up for hour and then went back to bed. Think I must have slept. Great fun today, was bitten near my eye and now eye lid is swollen, waiting for the tablets to work but wearing sunglasses indoor as I am scary even to me.


bessylooloo, you are right when you imagine probably thousands of us up and about at odd hours. I have fibro and copd and chronic fatigue syndrome! The last is as an add of from fibro. I give in now and get up and have a cup of tea but I do nothing that will stimulate my brain (such as it is, lol). I do find reading helps to get me back to sleep but everyone is different. Unfortunately I do get exhausted during the day and I do have to give in and sleep then! I try hard not to sleep in the day but sometimes it's just the only thing to do. I have friends on a support site who iron, bake, paint etc etc during the night! If we all lived nearer we could party!lol


You can join our club if you want it is a very exclusive membership but unfortunately it is a club that no one to our knowledge would be rushing to join! isn't it awful. I have always been a poor sleeper but since this I can go days without any sleep at all and I am on one of my "benders" at the moment. I used to try getting up early but found that was just detrimental to my pain. I take my little MP3 player to bed with me and play my music for hours in the hope that it will lull me off. Get up if the pain is bad and have a pootle around and put my Tens machine on and often make a cuppa then try again to rest. I also read alot but strangely will get so tired that I can hardly see the words but as soon as I settle back down again I am wide awake. i think the niggling pains I have all the time must wake me up as soon as I drift off but I am not prepared to take any more medication as I am already on alot. If I lived on my own I would probably get up and do some boring jobs and perhaps reverse night and day as we have always laughed and said I could easily be a night shift worker. Of course when it gets to getting up time I start to go sleepy but if I have stayed in bed all it seems to give me is a stonking headache. About once a week I will take a sleeping pill which gives me a few hours. I have tried all the meditation methods and even have one on my MP3 player but they do nothing for me. Hope your novel works out it sounds as though you have a talent there. Glad that your jewellery making is making you a bit of money so your none sleeping time certainly isn't wasted. I often think of the others in the same position as i walk the


I get amazing relief from pain at night from my electric blanket I lay completely flat on it and it loosens the muscles and hence the pain goes and I manage to get back to sleep.


I've suffered from insomnia longer than I can remember. These days I'm in too much pain and too stiff to do anything when I first get out of bed, so when I can't sleep I rely on audio books. I can't even hold an ordinary book for longer than a minute or two, but I have a CD player I can listen to with headphones, also a tiny MP3 player that I can download audio books on to. They have saved my sanity many times over!

I'm a writer too, but these days I have to dictate my work. I use voice recognition and when I can't sit at the computer because of the pain, I have a brilliant dictaphone I can download to the computer.

Mim x


Hi Bessielooloo, love your name, I often imagine people all 8ver the world awake as I am. Luckily it is not a permanent state for me, but once I get on sleepless roll it is very hard to reverse. Wouldn't it be lovely to have a midnight party for us all.


Hi bab sorry u army sleeping well , I know how u feel I usually have my kindle by the side of me and play the radio and listen to a story that usually sends me off it also takes my mind off the pain a little. Hope this helps x gentle cuddles


When I do feel those brief sensations of sleepiness I carefully & slowly get up, take Trazadone 100mg + Baclophen 10 mg. I turn off all lights & push aside (don't pack up & put away - literally push aside) whatever I was working on. Put in DVD of a favorite movie I know word for word, close my eyes & listen to the tv. 80% of the time I will drift off to sleep. The hardest part is becoming physically attuned to yourself to recognize your bodies sleepy point, because with insomnia they are brief & fleeting. Then discipline yourself to IMMEDIATELY use them to go to sleep.

Good much to you & all fibromyalgia patients! I know sleep disturbance is a part of the syndrome we all struggle with. Special love to those working & with children who must try to fit into a required sleep routine. God Bless!


He Bessielooloo. I am having a pretty good week; less fatigue in the afternoon so fewer naps and hangovers that result. I hope you will soon be able to sleep better. It just sucks and makes things worse. Vicious cycle.

When I have insomnia, sometimes I will sit up in bed and read till the book falls out of my hands or I just doze off. I can't watch tv to put me to sleep; it just doesn't. But I might give up the struggle to sleep and get up and turn it on.

Most of the time, if I can't sleep or sleep in fits. I use benadryl and it helps, but a lot of times, by the time I realize I need it, I don't take it because I'm afraid I will then sleep too far into the morning. I hate Valerian - aftertaste like moldy hay . . . but it works for some people. Chamomile tea is helpful for relaxation and sleep, but it is a pretty mild herb. May not work for everybody. It helps me get relaxed but not stay asleep. I've never tried it in the middle of the night.

One thing I try to do so I don't sleep as much in the afternoon, is save a chore gfor PM hours that I can do which will keep me awake - at least for the most part - then I am more tired at night. I don't know how much you are able to do. My FM is not so advanced as some. I still walk my dogs in the morning and maybe a short one at night.


Hi Bessylooloo

I am so sorry to read that you are suffering in this way and I genuinely hope that you can find some resolution and relief to this issue. I have been an insomniac for years (more than I can remember), and I stay awake on my computer writing! It has given me a good life and great happiness over the years.

I genuinely hope that you are feeling well today and that you can find the answers that you are so desperately searching for.

All my hopes and dreams for you

Ken x



I have a fondness for silly hour TV, especially when the open university programs are on. Rather than fight with my bed I find it is best to get up, have a warm drink, read or watch TV and wait until the body gives me permission to go back to bed, I find getting worried and upset about it makes things worst. Gentle hugs.


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