Fibromyalgia Action UK


Got diagnosis over a year ago now, thought I was going to be told that I had onset of arthritis ........... specialist told me I had all symptoms of fibromyalgia - didn't fully grasp what that meant / would entail at time ! I must confess to being mildy relieved when told NOT arthritic, but the symptoms of fibro are every bit as crippling, painful and REAL ! As you fellow sufferers will know, it takes some living with and because no outward/visible signs to on-lookers, not a very believable ailment ! It's no joke though, having almost continual pain in any area of your body at any given time, disturbed sleep becomes the " norm " and wanting to curl up in a ball and sleep - because it is sooo comforting ! I genuinely thought my body was literally disintigrating below my skin with fibro, it just felt like I was falling apart - body feels so weak and sore, hard to explain but real to feel ! Wrong choice of words I know, but comforting to know that there are fellow sufferers out there, who understand and can identify with what I am saying here ..............

6 Replies

yeah i know exactly where you are coming from it is no joke we all look so normal ( well some of us ) lol but if they could put a scanner on you that would show up all your pain and other wonderful things that go with fibro i think people would wonder how the hell we manage to put one foot in front of the other!!!!!???? and some days i really dont know what to do with myself, i dont swear but at 3,30 am this morning i actually sat up and said for f--k sake jus let me sleep no one to hear it just the teddys on the bed but i jus had to say it. oh well you have good day or as good as you can and soft hug for you Diddle xxx


Thanks, feels good to have this online support to share / compare with !


Hi Jan, I was diagnosed 5 years ago now, altho I didn't believe my first 2 diagnosis, I couldn't believe that I could be in as much pain everywhere in my body and not have arthritis. I also thought that I was getting the early onset of alzheimers - very relieved to find out it was just my 'foggy' moments (fibro fogs).

This is an horrendous illness and I would gladly swap in a minute with all those non believers!!!


Hi Jan, I know where you are comming from, i was diagnosed wiht fibro about 2 years ago and went through hell not understanding the illness and having idiots tell me it isnt a real illness, i joind this site a few weeks ago and have found it to be great for advise,support,freindship and somtimes a bloody good laugh when reading some of the blogs and answers,

Hope you enjoy the site as much as i do, Keep your chin up :)



hi jan , i was diagnosed last year the rheumotoligist handed me a leaflet and said you have fm and people who continue to work have a better prognosis ! he made me feel like i was idle , at no time did he take into account id trained to be a nurse , raised 7 children , 5 on my own after i left an abusive relationship and was currently holding down a demanding job in retail he seemed very rude and abrupt with me, no explanations ,. i was gutted i felt like i was perceived as having nothing wrong with me , i even felt i had to stop wearing make up and started dressing drably to become outwardly the person i was feeling inside . I too was relieved when i read about fibro fog as i thought i had dementia . wow didnt realise a greeting could turn into such a rant sorry lol welcome Jan


Hey all ............... thanks so much for your warm welcomes and shared experiences of the demon that is F-M ......... People really have NO clue what we feel like and explaining it to them (unless a sufferer) just doesn't really cut it huh ! I would never have believed the level of pain from this - I actually thought my skeletal frame was on melt-down, or that I had something sinister like the dreaded BIG C !! Fibromyalgia is very dibilitating, painful and frustrating to say the very least - glad I have you guys on board to talk to about this .......... great to meet you all - will continue sharing and supporting with ya ! :) X


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