Fibromyalgia Action UK
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not a real question but would you understand ??

I have been a volenteer for a little while and i read many other peopls symptoms and stuggles ..

I was thinking ..Yep that was difficult but ..


conditions before us we at the moment are a bit miss understood due to the lack of good care from medical and the fact that sometimes we can do something then other days we cant ??

I mean would you believe that this condition ?

no real reson for its start however there has been some theorys tramma or illness ..

causes pain but no damage and this pain can move .. at will

while some people sleep and nap others cant ..

some times it links with other issues but you can have it on its own

some people are aware of the fog or fms signeds yet they move around the body

there is no physical damage and at the moment no real test ( athough i heard about the brain scan)

really if you did not have it would you understand ?? i would stuggle and yet i know its true as i have it

when i was younger dyslexia was a joke so i hope in my life time that Fms is exepted but i wanted to share this thought and maybe we as fellow sufferers can have a bit of sympathy for those who have no clue and hope to educate them soon xx

gentle dyslexic and FMS hugs xx

6 Replies

That makes sense, I often hate actually having Fibro because of the ' its all in your head' saying. I also have Irlens which im sure you no about? Usually a part of Dyselxia which ive struggled which and wasnt actually diagnose to have it very serverly until my last year of college!!! xx


Fibromyagia will be accepted one day, there is no doubt about that. The most important thing to do is raise awareness and not to give up if you don't get heard. Bang on doors, request a second opinion, don't give up! It's a bit like the suffragette movement - however hard we fight to be heard will make Fibromites understood and get the proper care and understanding they deserve in years to come! :)


Actually I don't have much sympathy for those that don't understand . I have - and have always had - compassion for those in pain . Whether that be a visible disability , a mental anguish or an invisible illness .

Compassion is something that's lacking in today's society .

God is invisible and yet billions of people believe in Him .

I'm tired of being told I look fine and not being believed by the medical profession and DWP alike .

So I'm sorry , but no .


good point xx


Last night discussing PIP with my sisters, both older than myself. My middle sister has arthritis, plus a muscle wasting decease, and she was told some time ago she had something similar to fibro, (can't remember what but comparing the symptoms there was very little difference), she was understanding, she gets DLA, and I'm sure because she is on income support, she has been called 7 times for a works test. So far I never have, not sure if that is because my grandson lives with me, he's just 16 now, or because I don't claim income support, job seekers are anything like that, as I have my late husbands pensions. But this with the PIP really worries me. My eldest sister who has arthritis, does not and will not believe fibro exists, can't be proved, it's not there! She insists if I lost my DLA, I'd be able to do a part time job, yeah right! I haven't worked since 1994, initially a stopped work because we moved house, then my husband worked, so it wasn't desperate that I did, and 2002 my 6 year old grandson came to live with us, In the years that have followed, I have become more and more disabled, and I'm now sure I couldn't hold down a job, I would like to though! But when even my own sister will not accept how ill I am, what hope do I have of convincing anyone else? I have arthritis as well, but fibro, it's such a complex illness, so many symptoms as you say, you either have very few or lots, (yep that's me), but no definitive proof, dam (and stronger words) fibro!!!


you are so right!! if you're lucky the people you spend most time with can see how awful things can be sometimes, but no-one, apart from those with fm, could possibly understand the struggle we go through!


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