What is the most frustrating or difficult aspect of living with fibromyalgia?

I have just been diagnosed with fibro but my fantastic GP thinks I've probably had it for 20 years or so. The last year has been a bit of a nightmare with a massive increase in pain in both my joints and muscles, dreadful memory and concentration problems and headaches. I also have severe back problems and IBS. So at the moment I'm finding it difficult to cope with everything although I do try and live each day as it comes and I certainly try not to let it win. That's why finding this forum is great so I can talk to people who fully understand what's going on. Family and friends can't understand it although some are really trying too and most say things like ' oh it's just your age' or 'it will pass' or ' it's a virus'!!! Like Ravenwood I'm actually thinking of not telling people!

for me it's the comments from my partner and family like

you can't be tired you haven't done anything

your lazy that's why

and having to try and cope with the "cotton woolly days" that are the result of fibromyalgia 

I'm 20 and recently been diagnosed with fibromyalgia and hypermobility and I get comments from family oh you will be alright youll get over it! And where people can't see our problem they assume we are fine and are just a bit achy in general and it does wind me up being in chronic pain everyday and having to restrict my life at 20 is hard as it is without people telling me I'm lazy or I dont look ill 

Hi rosie 1 - Iam exactly the same as you and your complaints.Hope you are doing good today and taking care of yourself...

People who don't understand how much you hurt and being housebound because of the pain

Hi! New member here. I'm 30 and was diagnosed with fibro 8 years ago. Over that time it has fluctuated in severity due to lots of conditions (climate, stress etc.)

The hardest things are always: the unpredictability of it, people not understanding, the forgetfulness, the pain, the struggle to get out the door, the inability to live a full life, the frustration and sadness.

My parents not accepting it, even though my Mum has it too.

I feel for you all I am 39 now I felt like I have had it for at least 6 years but only got recognized last year I have friends who have it and on some things I feel lucky on but for me its the tiredness sensitivity to light pain all over brain fog and not been able to live my life to the full it makes me feel down and low and want to cry. people don't understand it your just slow lazy cant be bothered takes longer to do things and worst of all is employment they don't get it so you don't get jobs you get treated differently.

Hi all, the pain and fatigue takes some dealing with but for me it's the invisibility. Trying to lead a normal life and keeping it to myself. I watch other people complaining about backache or a sore leg or a headache and yet I can't complain about what I'm experiencing. I know that sounds bitter but I can't seem to help it. Then if I can't keep up with someone I have to try and explain and you get that blank look. I feel like a fraud sometimes and sometimes when I hear someone complaining I want to shout and say actually I'm in a hell of a lot of pain. Sorry for the rant!

Brunette you are so right a lot of people don't get it some people I have spoken to are like I have that what is it they don't believe when you try and explain and when you do you get looked at like your crazy I have had a couple where they say oh my god how do you get people to see what's wrong and how do you cope and why do you do this job I just want to scream at them because I can I aint letting it beat me but their looks you know they just don't get it.

I agree nickyg, I do my job because I love it. FM is part of my life and will likely be forever, but I have to do what I can to not let it take over my life for as long as I can. Each day I get up and keep going with a smile on my face. But it's so hard work not screaming out loud for god sake this is bloody hard work! I wonder what would happen if I did??? sometimes you just need a damn good whinge like everyone else! One thing I do when I do try to explain to someone why I'm limping one day and not the next, is I make light of it and say something like I have this daft condition that affects my muscles. Probably because I don't want pity but sometimes I could do with a bit of understanding. bleedin eck we can certainly rant can't we. I didn't post on here for quite some time because I don't want to complain all the time, I am really positive for the most part but it's just nice to know people get it. xx