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Fibromyalgia Action UK
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Insomnia

Hey everyone, having a hard few days with a spell of insomnia. I'm on Prednisolone at the moment which always makes my sleep worse and I just feel terrible and really emotional. I feel like my head is a mess and it's making my pain levels so much worse. I've tried everything I can do to try and sleep but as Fibro affects your sleep so much I've gotten used to Insomnia. There's a loneliness that only 3am knows! Not seeking advice on how to sleep, but just wanted to share with people who may be going through the same thing! I feel like a crazy woman, I can't concentrate on anything and I just want to cry all the time! Ugh, trying not to think about tonight but I' starting to feel anxious about sleeping already which doesn't help either!

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Hey Sweetie,

I know exactly how you feel. I also feel my most vulnerable and down at night, especially now I am on my own. For me sometimes the tiredness is the worst part of this illness as it stops me from being able to function and think! Like you, it also makes me feel really emotional! Even when I do sleep, I never feel like I have slept - it's so awful isn't it? I find it helps to know I'm not alone though xxxx

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Hiya hun, thanks for your reply. It's good to know that I'm not alone! It does help a bit :o) I can completely sympathise with that. Sometimes the fatigue is worse than the pain, as when you've had no sleep you can't really do anything can you! I feel like I'm drunk today after 2 nights of not sleeping. And I just want to cry at everything! I know what you mean about unrefreshing sleep too, Fibro is such a crappy illness to have isn't it! I just don't understand my body, I'm exhausted all the time but I feel like there's something missing in my brain when it comes to falling asleep! I don't even fall asleep during the day, it's like my body is permanently switched on! Sending big hugs to you and hope you're doing ok xxx

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I know exactly how you feel :( I feel like I am constantly sleep walking through my days! What's worse is I try and get into bed really early as I am so tired and end up just laying there like a lemon haha!! I am so tired tonight actually you? Xxx

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It's horrible isn't it. I managed to go out for a bit today but I just felt like I was drunk! I had another bad night with insomnia, hope yours was ok? I never go to bed early as I feel like I'm setting myself up to fail if I do! Hope you're ok xxx

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Do you also find that we can be quite forgetful too big hug i share your view

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Yes, I'm definitely forgetful as well. Massive hugs to you too xxx

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Hi Makimom I really feel for you, you are not alone, every time I think I have cracked these mind games, they descend on me again. I do think a lot of this mind thing Is because of all the pain and sleep meds we are experimenting with. myself I was on a lot of morphine which I came off of. because I had my shoulder operation had to take a small amount again, and if I do not take it every twelve hours for pain I feel my mood and sleep pattern change. so am trying to manage on just parectemol, but very hard to do, I hope you manage to sort thing out,

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Yes I totally think my mind is involved in my sleep problems. I just can't seem to switch off, I think my anxiety is making it worse too. Which I guess is part and parcel of this lovely illness too! Sorry to hear that you've been having problems too. I hope you're sleeping patterns and move improve soon but I can really sympathise with your difficulties! Xxx

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Hi there. I have just been diagnosed with Fibromyalgia (today) and I know how horrible the insomnia is. I went through a horrendous spell of it which started around 6 wks ago. It's hard when your brain is wide awake and whatever you do, you can't sleep. And then when you do it's often not for long and at times you shouldn't be sleeping. I've thankfully come out of the other end and I also take amitriptyline to help. But I've not taken my amitriptyline for the last 4 or 5 nights due to having to get up to attend various things and appointments in the morning (it makes it hard for me to get up early morning).

My hubby works nights so I get up and make a hot drink and watch random rubbish on tv before going back to bed and trying to get back to sleep. Sometimes I'll fall asleep on the sofa which I don't worry about doing now, especially if I get a few hours sleep.

It's easier said than done, I know, but try not to worry about whether you'll sleep tonight. Instead, think about having a nice few hours of "good" sleep. Positive thoughts . . x

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Hi there! Wow, you got your diagnosis today? Do you feel relieved in a strange way? I know I did when I was finally diagnosed, sending big hugs to you. Did you have a long road to get diagnosed?

I feel like the insomnia comes in waves, I'll have a couple of good weeks and then you will hit a bad spell like you say! I've taken Amitriptyline for years now, I'm not sure how effective it is on me, but then I wonder how much worse I would be without it.

I'm trying to be disciplined and get up after one hour of laying there asleep but I'm really silly and hate going downstairs and just want to stay in bed! Something that helps is my little cat Monika, it sounds sad but she does make me feel better if I can't sleep! Last night at 3am I finally got up and went to lie on the sofa and she kept me company which was nice.

That's great advice thanks, I'll try to keep in mind about those good few hours I may get tonight! Hope things Get better for you soon xxx

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I do feel strangely relieved, kind of like, well I'm not imagining this pain and the variety of symptoms that go with it. It started back in around Sept/October last year with a burning and tingling sensation just below my right knee and part way down the front of my leg. I then had suspected chickenpox in January and from then on I really went downhill.

I'd had a period of extreme stress and a workplace "situation" last year followed by the death of my mother in law towards the end of last year. I firmly believe this probably triggered it all, along with chickenpox.

My tests started in February this year as a Dr found I had a heart murmur and I also had a few various blood tests. I was referred to a neurologist around Easter time but it took until August to finally get the actual appointment with neurology! So, around 9-10 months to diagnose.

I understand what you say about your cat. I have a dog who, although he can be a bit full on due to his breed, usually cheers me up with his funny little ways! x

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It sounds like you've been through a hell of a lot recently! Massive hugs to you! Always here if you need to talk.

I think animals secretly know when you're in pain or suffering. My little Monika was up with me again all night. She's not usually a cuddly cat but she let me stroke her and have a tiny cuddle. I think she puts up with me but it does help me feel happier. Xxx

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Thank you 😀 Yes, it's not been an easy couple of years. But who said life was easy?! My boy's a boxer x and isn't usually a cuddly dog. But we had a play in the garden earlier in the sunshine before it got too chilly. He's ball obsessed! 😁

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Hi Makimon, I can empathise with you I look forward to sleep but dread it at the same time as it is an epic challenge to get there. I suffer with RLS as well as the fibro and it takes forever to get to sleep...

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I totally feel the same! Sleep is the only escape isn't it, so when you can't get any you feel so distraught because you have to deal with so much more. RLS sounds horrible, I think I may have had spells of that in the past. Painsomnia is the worst, I find that my pain levels sky rocket when I can't sleep too. Hope things improve for you soon. xxx

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Side effect of steroids can be sleeplessness its something to do with the natural cortisol in your body which kicks in about 2.00am and them bam wide awake with extra from Steroids .

Also depression is a side effect

Hope things get better for you soon

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That's good to know, I have been extra down recently with my mood but I thought that was just not sleeping! X

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What's Zopiclone? Xxx

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I have a spine condition (multi prolapsed disk + degenrative spine desease) which put me on zopiclone for a long duration course.

Some thoght about this:

1) It's adictive. once you take it for more than 2 or 3 days, your going to have a rebound. good luck with that.

2) You get tollerante to it, which means after 3 or 4 months the dose creeps up! making it harder to get off.

3) and this is the important part. IT DOES NOT WORK vs the Insomnia caused by Meningitis. Im on 15Mg Zopiclone - a very high does. its 5:12am on my 4th night with no sleep.

please. this is one route not to go down, i am looking for other methods. two things i have hurd that might help

1) softer pilows to support the nect, in its natural stat. part of the sleeplessness is caused by the fact your head is no longer in the same position as it was during the day. try chanign your pillows to ones that support you better to big to small make a big differance

2) i found a neck heat wrap from my locak chemis (about£5.00) heat it up in the microwave, wraped it around my neck, at night. it helped a little till my cat shredded it. i want to get naother now. is this ig soing otbe ongoing situation.

3) try raising the bed from underneath, the end your sleep at, put some old pilows or quits under the matrass, and raise it like the hospit beds did. they were raised not flat, again it is suposed to help.

I was diagnosed on the 26th January 2018, and only out of hospital 2 weeks. so still comming to tearms with the after-math. so i am very open to any ideas people have with more experiance than myself.

I wish you all luck

safra

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Ah right, thank you. My GP did mention that I could have a short course of sleeping tablets but I never went through with it as I've had so many health problems recently! I will ask her next time I see her though xx

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Just to say I relate to that 3am loneliness. The rest of the household is asleep and I peer out the window and thinkmof all those asleep out there. I just wonder why I can't sleep! But I know worrying about it only makes it worse and try to read, watch something or listen to music. I've tried loads of different sleeping tablets and none have worked.

Patrick x

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Hiya, yes it does seem like a very lonely time indeed. I've been trying not to worry about it but I just really want my mind to rest and switch off. That's interesting to hear, I've tried the herbal ones and some over the counter ones now and they did nothing. I wish sleep problems didn't happen so much to us! Hope things improve for you soon x

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Yes I've tried the herbal ones plus the strong prescription ones plus strong American ones. I think they can be useful for two or three nights to get you into a sleep pattern but long term they don't help me at all. As you say not worrying about it is key and try not to count the hours! X

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So I had another night of insomnia, I think this extra long spell must be because of the steroids I'm on. Can't wait to get off them but still have a few more weeks :o( I've never had a spell of insomnia last this long so it's quite unusual. After trying for 3 hours last night, I got up at 3am to make some crumpets, watch some South Park and at 4am tried to sleep again but nothing happened. Got up again at 5am and managed to sleep on the sofa for an hour and a bit but woke up when my partner got up at 6.30am, then I have been awake ever since! I tried to have a nap this afternoon but still couldn't sleep, I'm not even yawning! As well as feeling completely weird and emotional it's making my pain levels so much worse. My hands and arms are hurting so much for no reason. Ugh fingers crossed I can sleep a little tonight but I'm not holding my breath! Xxx

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I really feel for you. It definitely makes the pain seem worse and the ability to cope. Sleep deprivation is a real tool used by the military etc when interrogating prisoners not just something you see in films. Our brains simply don't function properly when deprived of enough down time. Bizarrely I'm at the opposite end of the scale at the moment and want to sleep all the time! There is no apparent rhyme or reason to it so I just go with the flow. One of the biggest things I've found to help when having an insomnia bout is to listen to calming, chilled out music with small ear plugs and fall asleep with them. They distract and soothe the brain without tiring the eyes in reading or watching something on a screen. I also have made online American and Canadian friends who I chat tipo in the middle of the night with the time difference making it their day!

Hope you have managed some sleep if only a power nap!

Bright Blessings

Patrick xxx

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