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Fibromyalgia Action UK
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Will I ever get any sleep.

Hi everyone, I'm fairly new to this site, I have replied to a few posts, but I have never really introduced myself.

My name is Pat and I live in the Highlands of sunny Scotland.

I was diagnosed with Fibromyalgia and ME in 1990, since then I've developed Osteo and Rhumatoid arthritis, have also had a double Heart Bypass 9yrs ago due to coronary artery desease, I now take a lovely assortment of pills,spray's and potions. I have been left with angina now so have to be careful where excersize is concerned which in turn leads to weight problems, to which my gp told me that exercise is over rated, I like my GP,ha ha.

I tend to get a lot of chest infections and asthma attacks so I keep having to take steroids, lovely stuff, makes me hungry all the time, hence the size of ten ton tessy haha. That's my excuse anyway. Still have a good sense of humour, still at least I don't have to take a pill for that.

At the moment I'm struggling with sleep or lack of it I'm on Amatriptyline 150mg at night and Tramadol 200mg slow release twice a day, thats without everything else, you'd think I would have mastered it by now after all these years, but sadly no.

Has anyone found a recipe for sleep???

Well that's all Folks I'll go now I've bored you all to tears.

Take Care lots of Feather Hugs

Pat xx

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Hello Pat, Pleased to meet you, I have the problem at the moment I cant seem to stay awake. during the day. :(

Then It seems to be a different problem each night if its not heartburn its RSL or I cant get the right temperature. Some nights I just keep waking up needing to go for a walk. Once round the house and back to bed. Well it makes life interesting. :O

See you around and hugs sue xx :P

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Hi Sue, thanks for the reply, I had a little laugh about when you said you just go for a walk, I'd imagined you outside, coat on, stick in hand, and ready for anything, I'm lucky if I can get to the loo these days legs don't work much now.

I seem to be doing exactly like you, sleep during the day awake all night, Ive tried going to bed early about 3pm and then just lay there, tried taking pills earlier but still the same. When I sleep I seem to be very busy ie, sewing, digging the garden,cooking making a quilt the list goes on, and then there's the conversations I have with whoever about anything making cups of tea also doing all the hand movements with what ever I'm doing. My hubby thinks it's hillairius { cant spell} he said he's going to film me. It's no wonder I'm exhausted when I get up.ha ha

Speak soon Pat xx

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I often stand on the back door step at night, looking out over the Black Country. It is quite a view from the top of this hill.

But no way am I going out , I can fall down the steps in day light let alone in the dark.

As my son used to say when he was little" Oooo wook at d bwooses" :P

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Hi Pat,

I live in the States, so I don't know if you have the same name drugs, but I take Restoril, 15mg. It also comes in 30mg. For years with my FM, I would go through every night, not being rested when I woke in the morning, because I would sleep very light, dream a lot or just wake up about every hour or two and fall back into a light sleep. It's been a wonder drug for me with no hangover in the morning. I believe with the good night's sleep, my muscles don't get as fatigued as they used to. (Except I also" retired" from nursing in Jan. so I know that helps too. I still have to take hydrocod. for FM and RA pain, because we are still waiting for something to work. Sorry to hear about all the extra things that are added to your wellness :) But any way, that's what works for me.....good luck! mc

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hi mgbella,

I'll mention those pills to the gp next time I go. It's all very strange everyone seems to be very busy when asleep,I can hear a pin drop when I'm asleep and then I sleep during the day, thats the best sleep I have only 2 hrs but feel energized or nearly sort of. I've woken up in the night with my arms up in the air doing the actions of making a cup of coffee and talking to myself as if I'm talking to someone, very strange.

Thanks take care Pat xx

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Nice to meet you Pat,

Some people swear by eating a kiwi fruit about an hour before bed. It's contains melatonin which is a natural sleep hormone (you can take melatonin on it's own too I think, I remember my auntie recommending it to me when she found out about my diagnosis, she was doing some research). I saw the kiwi work for a woman in a documentary who had suffered from insomnia for years and was responding less and less to medication. Whether it works for you or not it's really delicious fruit, so there's no harm in trying it. :) By the way I love your sense of humour. ;) Very witty.

wanderingwallflower xx

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Hi Fay,

Nice to meet you too, I'll get some Kiwi fruit at the weekend I quite like it myself so I shall report back when I've had some, you get to the state where you'll try anything, apart from a hammer. As far as my sense of humour goes, it can also show that there's nothing at all wrong with me,because most of the time I try to laugh it off.

I get "Oh you look a lot better today have they found a cure now" but that's there ignorance.

Take care Pat

Feather hugsxx

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Definitely, I've had that all the time the 'you're looking well' (when ironically most of the time people have said this I've felt worse). If anyone suggests hypnotism as a cure, you just say 'No I'm not better, but the phone rings and I bark like a dog' ;) (that's not mine, I got it from the butyoudontlooksick website).

Good luck with the kiwi fruit, time it for about an hour before bed. And yes, I think a hammer is pushing it a bit! :)

Take care,

Hugs and fairy sparkles,

wanderingwallflower xx

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OOOO No can eat kiwi fruit . It gives me heartburn BEFORE I swallow it. Painful. :(

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Aw really? :( I think some it depends on how ripe or not it is. But yeah I suppose you can get different reactions to certain fruits - I think you can still get melatonin separately. xx

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I think I'm getting things a teeennyyy bit muddled Is that a skin cancer (melatonin) and you can buy seratonin. Help brain's died.

Patxx

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Hi :) unless I got the name wrong I'm pretty sure 'melatonin' is a sleep hormone. Maybe you're thinking of melanoma? You can also get serotonin prescribed which regulates emotions. :) xx

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Welcome Tiluca

Wish I could help but sleep and me are not good friends so I am always interested in what my fibro friends have to say in the hope that they come up with something I haven't tried. I am the same as Mayrose and seem allergic to Kiwi fruit. Restoril that Mgbella from the USA mentions is Temazepam in this country. By the way the Highlands of sunny Scotland is one of my favourite places spent many happy holidays touring there in our motor caravan when my husband and I were fit. Hope we get a solution to our problemx

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Meant to say without exercising !!

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Hi Tiluca,

Welcome aboard, I too am in sunny Scotland, Glasgow. I use essential oils,like rosemary, in the bath during daytime to keep me awake and then use lavender oil on pillow at night to aid sleep. I have only recently staerted amitriptyline after changing from gabapentin which left me really groggy all the time. I also will take a cola drink at lunchtime to stsy awake. I have had rheumatoid athritis since childhood, fibromyalgia annd chronic migraines for last 14 years. I also brought a juicer in january and juice fresh fruit and veggies into a drink every morning and have lost nearly 3/4 stone since starting. I hope you get a good rest soon, all the best,

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Hi Shazzy,

Thanks for the reply, I'm at Bonar Bridge way up the top near Dornoch.

I've tried lavender oil on the pillow and I have just bought a lavender cool eye mask which also block's out light, I keep it in the fridge until i need it only just got it so still early days. It's great for my migrains.

I have a dietition who I see once a month she has asked me to try the milky drink again, I was on it last year It's 600 calorie a day diet I lost 1stone in 6wks which was brilliant, but I had to stop it as I was in hospital for 2wks bowel problems.

I saw her yesterday again and I'm going back on it on Saturday it consist's of 1ltr semi skimmed milk, 50grms of Dried semi skimmed milk, and 12 grms of Benefibre which I get online, then put it all in a mixer like a smoothie maker and blitz it all together, I like to put half a banana in it as well, then split it into 3 equal amounts and drink it, morning, lunch and dinner. I use a straw as it takes longer to drink, daft really. If I'm feeling really hungry in the evening I'll eat an apple and that's it.

So I'll see how that goes again looking forward to it .

Lots of feather hugs take care

Pat xx

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Hi Tiluca

Welcome to the forum and I would like to say that it is wonderful to make your acquaintance. It is terrible when you cannot sleep, I know as I am an insomniac, and it can leave you feeling completely exhausted. Amatriptyline contains a sedative! So you must really have some problems sleep wise if this does not work for you?

I am so sorry to read of all your other illnesses, and I genuinely hope that you are not in too much pain or discomfort? I sincerely understand about steroids (Prednisolone) as I have chronic asthma and COPD, so I know where you are coming from, and how unpleasant it can be?

I genuinely look forward to bumping into you around the forum, and I sincerely hope that you are feeling as well as you possibly can be today?

All my hopes and dreams for you

Ken x

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Hello Ken

First of all let me thank you for your reply.

I too have COPD and chronic asthma, I didn't put down everything I have because it's quite a list

and I didn't want to bore everyone with woe is me.

Iv'e come to the conclusion that all these things are sent to try us and to see which one is going to get the benefit of the day, I haven't won a day yet but I'll keep hoping that I'll win one day. Doe's that make sense to you.?

I took my night time concoction of meds at 10-30pm and still wide awake with everything I take it should knock a horse out.

Methocarbamol 750mg 2 tabs 4 times a day for muscle relaxant

Quinine 50mg 1 tab at night

Atorvastatine 40mg 1 at night.

Tramadol 200mg 1 twice a day slow release.

Paracetamol 2 four times a day.

Diazapam 2mg 1a day

Lanzoprazol 1 a day

Asprin 1a day

Amatryptaline 50mg 3tabs at night

Prednisolone 3tabs twice a day

Seretide Evohaler ( Fluticasone/salmet) 2 puffs 3 times a day

Salbutamol 2 puffs 4times a day

GTN spray use when needed

Beclometasone 2squirts nasal spray twice a day

Well thats the list up to now and thats without the creams of GP for my legs.

I have to take the methacarbamol because I have terrible muscle spasms and cramps.

I will leave that little list with you Ken, I'm going to do a jigsaw now that I play on line.

I hope that your feeling hunky dory and ready for a workout at the laptop.

Take care feather hugs to you and your wife.

Pat xx

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Hi Tiluca, just read your reply to ken and wanted to say i take my night time amitrityline at about 6 pm for it to get me sleepy at about 10.30/11. If i took it same time as you i would not sleep til about 3am. Have you had your vitamin d levels checked ? Since taking vit d on prescription it has really helped with muscle spasms and cramps in legs. Take care now,

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Hi shazzy, thanks for that I'll ask my GP to see if she has checked for vit d as I've never thought about that, she take's enough blood from me every month, she has about 6 tube's of it, but I don't mind as it keep her on her toe's, she's lovely really, when I need to see her she always phones to see if I would rather her to come to me, most times I'll go to her depending on how I'm feeling, she's so kind.

I'm also going to try taking Amitriptyline at 5pm and see what happens, thanks for the thought Im also going to try kiwi fruit that funkyfairy mentioned.

speak soon Shazzy and again thanks. i'm of to play candy crush for a bit or I might try Mahjong.

Take care feather hugs Pat zzzzzzzzzz

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Hi Pat, it's good to meet you.

I can sympathise as I haven't slept properly for years. I don't even bother to try any more! What I do is listen to audiobooks all night, they help me doze off sometimes (if the voice is soporific enough!) and they stop me brooding while I'm lying there awake. They help to take my mind off the pain.

I borrow them from my local library or download them from the internet. There is a website where you can get them for free called LibriVox. I'm not sure if I'm allowed to put links to other websites here, but I'm sure you can find them on google.

Enjoy the jigsaw!

Mim xx

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Hi tulica welcome to the group. Im pinot and live in Glasgow I have suffered from fibro for many years now I also have a number of other health conditions which doesn't help pain levels. You will find everyone on this site very supportive and understanding I don't know what I would have done without their kind words of support.i was having dreadful time trying to get by on a couple of hours per night with pain and lack of sleep my pain nurse put me on nortriptyline and it has helped a bit maybe you could see if your gp thinks you might be suitable. I hope you are visited by the sandman tonight angels on your pillows xx

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Hi pinot, well the sand man must of done something as I've slept for approx 3 hrs which is brilliant for me, still woke up feeling like I'd been climbing mount everest it took 3hrs to do it which I think is a record breaker, but hey I cant have everything.

How are you today? I do hope your feeling goodish and not in to much pain.

You are so right about this site, I have been made to feel very welcomed by all who replied to my post, it really is good to know that there are other people feeling the same as me.

feather hugs to you Pat xx

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Hi Pat,

I have read all the responses to your plight of not being able to sleep and feel for you as I am a fellowfibro sufferer. I have had fibro for 29 years and was only diagnosed five years ago - you can imagine what I tried to do to find out what was wrong with me. I live in Namibia, Africa and we are at least ten years behind time with any treatment method. I know the feeling only too well if you lie all night and cannot sleep. I have started taking low-dose naltrexone (LDN) four months ago and I am finally having a good nights rest. I however add quite a few things to my evening ritual so that I an sleep. Melatonin, muscle relaxer, chamomile tea, Lyrica 75mg and LDN 4.5mg. Google it - it is prepared at a compounding pharmacy and you need a script. The first two weeks you might not sleep well and have vivid dreams and then it starts working. With the quality sleep I also have less pain now and have stopped all pain medication. Wishing you a solution to your sleep problem and lots of blessings :)

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Hi Pat

I don't know if anyone sleeps well lol, if it's not awake until 5am, it's asleep until 2am and awake the rest of the night, no happy medium.  What a lot you have to deal with. I always appreciate that I'm not bad off compared to some when I read the posts on here, but don't tell me that when I'm going up the wall with pain and jerking legs in bed at night. I try not to sleep during the day but had to give in one day this week and it was lovely. Still exhausted and tired at night so it didn't make a lot of difference. Everyone is so lovely on here and brilliant advice and other options to try. I used to take amitriptyline at night but they didn't help one bit so came off them. Have arthritis in spine and diagnosed last Nov with fibro, new swollen lumps coming up on inside of elbows and knees, they say it's not RA but I'm not so sure, just need to wait and see what my own dr suggests in two wks as it was a different dr I had last week. Tc catch up soon xx

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