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Fibromyalgia Action UK
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accepting fibro was it difficult to theextreme for others

I used to be very active but have been told i have fibro do others feel that they are attention seekers because some much seems to be going wrong?

why cant i walk very far with needing a wheelchair to get back?

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13 Replies

Hi fadedblossom,

Gentle hugs. :) I'll try and answer this question, without rambling on (a bad habit of mine).

From my own experiance I have to say when I first got my symptoms, people showed little sympathy. One of cruel ironies of this condition is that people look fine on the outside. Luckily for me, I got diagnosed early (ish) and people were much more understanding, but unfortunately for some people its not enough.

But know thats their problem. Not ours, its just their own ignorance. Anyone who feels that fibro is an 'attention seeking made up illness' is the one with the problem- they are narrow minded and unable to feel empathy- .and are not worth worrying about. I'm also sure its something many sufferers have experianced. Know that the majority of people are accepting of it. There has been a lot more research into the condition recently so there is much better knowledge and understanding too. Also know that everyone on here understands and wants to help.

Sorry to hear that youre suffering at the moment. It sounds to me like you have been diagnosed quite recently, so hopefully you will find a treatment that works for you- I was put on Seratralin (type of anti depressent) when I was first diagnosed and found that really helped me manage the condition, but I know thats not for everyone- there are loads of different treatments options out there. Anyway, I hope you feel better soon.

Best wishes, Funkyfairy xxx

(P.S. sorry if this doesnt make sense. Its late so I'm not really with it at the moment, also, because of fibrofog - one of my worse symptoms- I can get confused quite easily and have trouble saying what I really mean, that in turn makes me ramble. I often worry about how I come across- spent quite a lot of time editing and checking through this (as I always do before posting anything), but still worrying if its okay. Anyway, speak soon).

Thank u for taking the time to answer me u have been very helpful

I think the only people who understands are the people who

have fibro, I used to talk to the people that I work with about

my fibro but no one realy was interested and they are nurses

I dont bother now I get all I want from people in here and

my husband who helps no end most people think there is

nothing wrong with you as you look mainly OK and people

dont believe that there is anything called fibro and say its

just an excuse for lazy people so its easy not to talk to them

about fibro it makes me stressed and not worth it

I always had lots of energy did lots of things walked for miles

loved to do the garden and the house work, but things change

once you have fibro you just cant do those things anymore well

you can but not the same, and you just have to except that you

cant, it is hard and for a while you think you can do the things

that you have always done its a kind of grieving for your old life

and you have to except your new one as its not going to change

once you do that you can get on with your life dont look back

Thanks for the encouragement I don't feel so alone today p

hi never feel alone on here we are the best people to understand /

A friend of mine who is a newly qualifide nurse told me it was a lazy excuse .. i was really upset as i have 4 kids a job and a home i never let people down even if it kills me .. how is this an example of being lazy i do worry about the lack of training and empathy on the side of the medical profesion ...

we know better please hold your head up and smile after all we know best

gentle dyslexic hugs

i have always mistrusted nutrses to the point ofdislike since childhood and doctors receptionists who feel they have a direct like to god..... am doing much better today managed to shower and wash my own hair then ran out of energywent to lie down without feeling guilty good start for me due to help on this site, thank you

I agree with everyone , never feel like your being a lazy person and let anyone think that . my own mother was one of those as soon as i was diagnosed she said ..oh its only that m.e ! her nurse had told her this! i was fuming and printed out everything and made her read it now she is a little more sypathetic but i still feel she doesnt believe ! but i dont care i know when i get pain its real and when i nearly fall over its not pretend! stick on here hun you can say anything whenever xxx

I have a young carer from my side of he woods ahe is forcing people around me to accept the condition and has read all she can on it because i myself would not believe it, since being on here for a few days i feel a kind of peace within myself and know with my own acceptqnce that it is mot mental i will br sble to get thru this thanks for your support butterfly hugz.

Hi faded blossom

Just wanted to let you know ....big hugs

and that you aren't alone. Those who are not understanding you are being ignorant and they are losing out on a wonderful person in their life by not taking the time to understand what you are going through right now.

And I'm not just saying this without understanding. I'm genuinely struggling with similar issues myself . I have family members who just don't accept that I am still ill...and they thought i would be better by now...they think that it's a case of "mind over matter" (yes, infuriating!!) and I think this is quite normal for those facing invisible illnesses (like fibromyalgia, ME, CFS) to find it difficult to get others to understand their condition. Thankfully my own doctors who are treating me are very sympathetic.

All I can say is when you have the energy keep trying to those who are genuinely interested and who are actually listening...for the rest of them ...the ignorant ones who aren't actually listening and are just being judgmental.....leave them be to their own ignorance and take charge of your own happiness without them. Never let their ignorance and prejudice about fibro make you feel like less of a wonderful person. :) xxxxx

hmmm not into girls but i think i love you laughs at her own stupid joke...... petal

Hi fadedblossom,

I know just how you feel, it's hard enough getting your own head round losing the ability to do all the things you used to be able to do. I also know that it's not really surprising that the people around you struggle with it too.

Click on this link and print a few copies off to give to the people who you really want to understand. Although it was written by someone with lupus, tell them that the theory is the same for Fibro.


and remember, just because this is with us all the time, it doesn't mean we have to be miserable, we can still be happy.

happy hugs, kate :)

I was bedbound for 2 years 1997-1999 and never been good since, I was using a mobility scooter so although i'm not well enough to work, I still have overwhelming fatigue and ache all over and pain in my muscles with activity I can do a little more than I used to so there is hope if you can learn to manage your condition (I still have yet to master that, depression messes with that) but it can be done. trust me depression and stress does not help at all so try to find a way to find peace xx

when i have the energy and am depressed i write poetry and childrens stories to read back o me when i am tired my laptop reads to me in a monotone .cos my eye sight is failing. and sometimes i talk stories etc an dhave really good laugh at the way it interprutsmy zimbabwean accent. tiny but loving huzs petal

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