Fibromyalgia Action UK
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Another sleepless night

Well afte a horrible afternoon , here I am at 3am wide wake and in pain again, gets you down doesn't it. When will it all end , xxxx

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I am so genuinely sorry to read that you are suffering and struggling, and I sincerely hope that you can manage to get some sleep tonight / this morning. I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

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Thank you Ken, xx

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Ken, as Administrator, is your only role to offer sympathy ? Just curious.

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The role of a site Admin is to look out for spam, abusive and advertising posts and edit / delete them. To help point members in the right direction for links to Fibromyalgia Health UK web links and advise about the best places to go for benefit advice and quite a few other things.

However, I still like to reply to just about every post that I can and offer some much needed sympathy and empathy to members who are suffering and struggling.

All my hopes and dreams for you

Ken

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Yea I'm awake too in pian x

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It's an awful feeling , sometimes I feel like the only person in the world when I feel like this, don't know what I would do without this site, there is always someone there for you, hugs to you and hope you feel a bit better soon, xxx

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I am also so genuinely and sincerely sorry that you are also awake and in pain. It is so difficult at times with this wretched illness. I want to genuinely and sincerely wish you all the best of luck with getting some sleep.

All my hopes and dreams for you

Ken

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Sorry to you are wide awake. Pain is just not any fun at all. Hopefully once you do get some sleep it will be restful. Hugs

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Thank you, I hope today is a better day than the night was, hope you have a good day too, hugs to you, xxx

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Hi Mogi

It's an awful affliction associated to #chronic-illness #chronic-pain & #chronic-fatigue/Me and I was awake by 4-15am on the dot :)

Even my hamsters get up because I usually wake up around that time, it's great because I can talk to them and play with them. :D

I also play games on my computer to help improve my hand-eye co-ordination, memory and also they are a fab way to disappear time and mental energy so nodding back off may occur a few hours later. A useful distraction for me :)

A hot cuppa and a film or tv show often helps too :)

Sending sleepy healing lavender fluffies {{{{{ Mogi }}}}}

xxx sian :)

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Thank you Sian, I eventually fell asleep and managed another two hours , feeling slightly better so here's hoping today is a better day then yesterday, hope you have a good day too, hugs to you, Morag xxx

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Hi there,

You sound like me!

I get out of bed if I find myself awake and in pain.

Put the kettle on, have a nice cuppa, pain medication and wrap up, sit on my electric chair, get out my iPad and play Majong, cards online, whatever other games I've found during the day ready for my middle of the night..Feast of pain getaway

I feel this does work and now because I lost my job I am able to do this as no more early morning alarms to wake me up.

Unfortunately I'm in the middle of a nasty Flare Up right now, really bad, on the top dose of medication and still getting some break through pain. A call to my GP today I think?

Hugs to all, it looks like the sun is trying its best to come out today!

Lottie x

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Fluffie hugs {{{{{ Lottie }}}}} sorry about the job but pleased that you're finding a routine around the pain and managing a little better. I play Mahjong too have you tried the 3D ones they're pretty hard some of them :) My brain loves a challenge :)

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Yes I have tried the 3D ones! A bit too difficult for me in middle of the night, also the music is so relaxing too. I've found myself many times asleep with iPad still on my lap, timed out on the game, quite funny.

If you are playing on an iPad, have you tried 'Family Guy'? And The Simpsons, brilliant game and free! I've been playing those for over a year now, more like 2 years +

Have fun gentle hugs

Lottie

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HEEHEE :D

I often wake up like that with the lap-top :D

I play time-management games, match 3, puzzle, adventure... LOL many different ones :)

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Playing games help shift your mind from pain to game 😃

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That's what I do too Lottie, play games on my iPad or if I can concentrate through the pain I read , I get up and come through to the living room as I feel I am annoying my husband if I stay in bed. Hope you get to speak to your doctor today and your flare up settles down. Hugs to you, xxxx

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Hey Mogi

I'm exactly the same, I can't stay in the bedroom even with the sound off and the light on my iPad is on the dimmest it can go, I know it wakes him. I also get extremely hot all the time either due to my medication or the 'change' so if I put the fan on, I can feel him thinking arrrgh so it's just easier if I go in another room. He insists we stay in the same bedroom even though we have 2 single beds pushed together. Something I never thought would happen!

I prefer it and he actually admitted he prefers it too, better sleep as I get so hot and sticky, can't be very nice for that other person.

Enjoy your games don't forget check out Simpsons and Family Guy! Bfn

Lottie

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Hi Lottie, funny you should mention the being very hot, I went through the change about 3 years ago and have been ok but this past few months it has been terrible, I am lying on top of the bed rather than under the quilt and its really cool during the night here as it's been miserable and rainy for weeks. I will have a look at the Simpsons and family guy, thanks Lottie, like my games to keep me going through the night. Take care , hugs to you xx

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You need to see your doc . Need better pain management and something to help you sleep . If you can get some rest at night then your pain during the day will be easier to cope with. Fibromyalgia is difficult to manage and there is no cure but you can have better quality of life. First you have to accept that pain is going to be a part of your life so you need to get with your doc or pain management doc and figure out what will work for you. You can get relief but it may take some trial and error before you find right combination of drugs that can keep you comfortable. I am on Butrans Pain Patch that I wear 24/7 and change once a week. I also take Cymbalta, Celebrex, Vit D, Fish Oil, and Hydrocodone . I take Temasapan to sleep and high blood pressure pills. I use Two Old Goats lotion ( you can order on line). I also use Salonpas pain patches and Aspercream w/Lidicaine both of which you can buy over the counter at drugstore. There are several meds you can take so work with your doc to figure out what works for you. Hope this helps 👍🏻👍🏻👍🏻🙏🏻🙏🏻🙏🏻

Di

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Hello Di, thank you for replying. I havnt actually been diagnosed with fibro, I had a major op on my spine and since then I have never been the same , but a lot of my symptoms , going by what I read here are pointing to fibro. The last time I went to my doctor it was a locum , as it has been the the last few times and she was very dismissive and said it was just post surgery pain but I don't believe it is , it is going on too long and affects me everywhere . Thank you for your information, I will make an appointment and ask to make sure it is my own GP I see rather than a locum. Hope today is a good day for you, hugs to you xxxx

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Hello Mogi

I was wondering whether you have asked your GP to refer you to a Rheumatologist? They are pretty good at diagnosing whether you have Fibro or not.

You have a right to a referral and at least you would then know what you are dealing with.

Gentle hugs

xx

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I havnt asked for a referral because I did really think it was perhaps just post surgery pain and was all to do with my recovering from the spinal surgery, but I feel it's going on for far too long and I have more bad days than good days so my plan is to poet an appointment and discuss it with him and see what he says . Thank you, hugs to you xxx

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Good luck with your appointment. I hope you get the answers you so deserve xx

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Hi Di,

I hope you don't mind me asking you, what is Aspercream w/Lidicaine??

I have several Very painful places like shoulders, wrists and terribly painful finger which now has painful nodules on it.

I was told by my GP it's a type of Arthritis not sure which one, GP did tell me but I've forgotten it now.

I was going to try an Ibuprofen cream, but the one you mentioned sounds more like the type I need. Lidocaine is a pain relief??

Take care and I await your reply

Gentle hugs

Lottie xx

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It is a cream/lotion that you rub in the areas of pain, get pretty fast relief. Be sure and wash hands after applying because it numbs and if you touch like your lips , you will notice it, lol. Go to your pharmacy, should be with other pain relief creams, if necessary, ask pharmacist where they stock it . Has really helped with sciatic pain across lower back (butt).

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I waken everyday between 3am 4am both knees freezing and painful im 80 years old im on painkillers but they never seem to work. this has been going on since 2010 anyone any ideas.

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Sorry to hear you are in such pain daddy ear, it's not nice and worse when it's the middle of the night, sorry I can't help with any advice but know that someone will give you some greats advice. I hope you are feeling a bit better at the moment. Hugs to you , xx

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Are you wearing Pj's to bed? Many times I wear the bottoms of sweat suits just for the warmth. Electric blankets help also .

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Apply a pain killing cream, I like Aspercream with Lidocaine and wear warm up pants at night to sleep.

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many thanks but still suffering

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I find an electric blanket helps, one that is an under blanket with a low setting so you can keep it on while in bed. Also, maybe ask your GP about some pain gel to help combat the pain :)

Fluffie healing hugs {{{{{ Daddy Bear }}}}}

xxx sian :)

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NURSE IN GAVE ME ELASTIC STOCKINGS WEAR DURING DAYTIME HAS STOPPED SWELLING LEGS AND FEET GOOD BUT KNEES STILLFREEZING EVERY MORNING

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That's good that they have relieved the swelling a bit. Would a wee heat pack help for when you went to bed , the ones you can heat in the microwave, I use one of them quite a lot , hugs to you xxxx

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Are you on pain mess? I find stretching helps. I have a lot of sciatic pain . Slow, deliberate stretches. At your pharmacy, there are several over the counter pain reliever lotions, gels and patches . For trigger points, my go to is : Salonpas pain patches. They come in all sizes, I prefer the small ones in green box. Many many times I will apply as many as 10 , covering as many triggers as I can find . Usually triggers are close together . Usually put on at night and remove next day . I also use Aspercream with Lidicaine, it is OTC cream for almost instant pain relief . I use others also . I wear a Butrans pain patch . Wear 24/7 and change once a week, it is prescription . I take Hydrocodone usually 3-4 times a day and Temasapan for sleep . Also on Cymbalta . After years and years of trying this and that finally have a combination of meds that help ( for now). If you can find something to help you sleep at night, makes the days more tolerable .

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