Fibromyalgia Action UK
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Im still learning a lot of new simptomes of this MR fibro and not from books eather! in a lot of pain today been helping my mum because her fibro is aving fun with her again today but when doing that made mine worse oopps realy need to learn to take it easy and not push my self as hard. was worth it tho been making xmas decs with my little sister who is 5 and she loved it. does anyone els get it when there body is shutting down but your mind is wide awake?? and if so have anyone got ant tips to help with it all help would be greatful

9 Replies

Hi Nikita

Fibro symptoms very tremendously, not just between different people, but for the same person at different times. Variations of sleeplessness seem to be very common. For some people, it's the physical pain keeping them awake or disturbing their sleep. For you it sounds more like your thoughts are racing. As you have have been recently diagnosed, and naturally are trying to learn more about the condition, and are no doubt experiencing an emotional reaction to the diagnosis, it's not surprising that your mind has a lot to deal with. It might help you to learn some simple relaxation techniques, with guided visualisations or a meditation technique to enable you to calm your mind when it starts to get over active. You need your sleep!

Hope you get some rest




In my experience i was diagnosed with FM years ago and tell you the truth some drs seem to understand others dont get it at all!! Now that i have been diagnosed with Emphasyma the are trying to get things right , but its my pain in body that does me in not the lack of breaths i get ! I am trying to make my drs understand that fm is worse than they can imagine I hope all goes well for you and they find the cause of this fibro pain


Interesting my mum has fibro too although she was diagnosed with non nodular rheumatoid arthritis 30+ years ago. As for mind awake body asleep try meditation it helps me relax at the end of the day and often i fall asleep. Try and find a clip on youtube for a body scan technique and do it laying down. I also use mindfulness all the time and when i find a particular moment difficult pain/exhaustion etc i just let my mind focus on that part of me that needs the extra help and i even use it when i need to do something i can't put off any longer,like the dishes or the washing. If you can get hold of a book called The Quiet by Paul Wilson it is the best book i have ever come across for learning out to meditate. But remember these things take time to learn and to practice daily. Good luck and don't forget to rest.


after strugling to get to sleep until 4am this morning is now paying for it in so much pain n so tyerd i just dont know wat to do today and i got college tomoro so hope it eases of by tomoro cant do another 2 week stent of this again and thank you people that has helped me alot

(( verry gental hugs to all ))


Hi Nikita,

your are so young to have these horrible problems, I feel for you. I agree with the previous statements, relaxation is the key. Something that helps me is visualising a restful place that I have visited, a place I felt at peace. It could be the beach, listening to the sea rolling in, or a peaceful riverside. Go there in your mind, you could always play low level background relaxation music to help you imagine that place clearly. It does take time, but it works. Clear your mind of distractions, include deep even breathing (did you know that increasing the oxygen in you blood, can helps decrease pain in your muscles). My occupation therapist was so helpful, she taught me these techniques and they work for me.

Another thing, you say you push yourself, try to pace yourself. If it helps keep a daily log of what you do, try to get an even rest and activity programme going.

I hope you get the need rest, you need it at your age. All the best with college, sending you a friendly hug.

Your friend.


ta i might try using that tonight if i strugle to get a sleep but how im feeling now it wont be a problem lol and i know but im just like ' i just do this then rest then somethink els pops up i just got to learn to say no sometimes ant i will hopefuly get some rest today guna take it easy



nikita i know what you mean.Yesterday had my grandson not on my own, though another one of FIBROS selfish can't do.Meaning he is 2 very full on and he is very wearing on my body and mind.When my little cherub left i sat down, my body was burning,it was trembling,i felt like i had done a marathon,i sat there and my body was going down slowly it felt like it was going to stop completely,heart the lot,but of course not .I took my nightly dose and crawled upstairs to bed lying there for ages,i was that tired should have gone to sleep there and then,i did eventually.Not to bad this morn although very tingly and numb,so answer to that is yes if that's what you mean,my mind does become very alert at night,loads of same probs jacksiex


i have these symtoms and they are very frightening when it happens because you feel trapped ,you can hear whats going on around you but no matter how you try, your brain is shouting help,but nothing comes out,im sorry i can offer any help ,but selfishly its good to know their is someone else has this as my dr just looked at me as though i was making it up.


Yeah I have the same issue with my doctor. All she does is offer pain killers and anti depressants which only makes the condition worse. Such a shame that doctors are so ignorant about FM. Without doubt lack of sleep makes FM worse. I remember a week it was so bad that I was only sleeping for like 4 hrs per day. Finally I was so exhausted that I hit my bed at 1800 and didn't wake up until 1000 next morning. That day was possibly the best day of my life. I woke up feeling refreshed, I had huge amounts of energy, walking, running and felt no pain at all. Playing my guitar and felt very positive and motivated. I actually thought I was cured. That evening I couldn't sleep and woke up early feeling exhausted and in pain. I've lived with this hell for the last 10 years. Future does not look bright. I'm amazed that in this day and age a cure has not been found. Good luck to all.


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