Fibromyalgia Action UK
40,239 members52,349 posts

I need help and advice !!

I'm struggling to deal with fibro.

I'm struggling to explain to my company how bad I am at the moment and how much pain I'm in.

I don't know what benefits or help I'm entitled to.

Family are bugging me to do research on what I'm entitled to and it's all so confusing. I just want to curl up in a ball and lock the whole world out.

I feel like I'm so alone. I want the people closest to me to understand. I want advice and I have search online it's all so confusing.

6 Replies

Hi Racket,

Sorry, I can't help answer any of your questions but I will be following your post carefully as I am in almost the same position as you. I have recently been diagnosed but looking back have had worsening symptoms for many months. My family are supportive but are finding the changes in what I can do difficult to manage and fully understand. Both my GP and my employers occuaptional health service have said I will be able to return to work but as I am still getting worse I can't see how. I have no idea what I may be entitled to and, like you, find it all very confusing. I am trying to work through the help guides I was sent by one of the lovely ladies on here but I am unable to concentrate for too long which doesn't help. I am g=finding myself getting more and more depressed by it all so will happily join you somewhere warm to just hide away from the rest of the world.


i was told i had fibro, but my disability was cut down from high rate to low rate care, i also have incontinance, and arthritis,and i need help to get out and into bedi have a bar on the side of my bed and i wear a button around my neck because i tend to fall alot, i used to have a carer but now i get no help and there are days i don,t get out of bed, so i don,t eat or get a drink, i have asked the d dss to look at my needs but they said that i can put in for pip but in the mean time i will lose alll my benefits in the mean time while they look at my claim, and the bedroom tax does not help, this xmas will be very hard but at least i will get beans on toast for my xmas dinner, as my sons are going away and i willl be alone


You need the Spoon Theory. :-)

I think it is somewhere on this site. I'll go look.




Hello Racket,

I completely understand how you feel as 7 years ago this was me too. Please can I provide you with some information which may be of help.

Here is a link to our website to our factsheets you can download & print, to take into your employer if you wish;

We also have a page about Work & Fibro and this link is below too

Here you can read a brief overview of your rights and other organisations which may give further advice. If you would like any further advice about your rights, you can also email me directly at

Regarding benefits I like you felt too poorly to cope with reams of paperwork and my head was foggy , so I too felt very unsure what to do. I was then told about our local branch of MIND charity having an advocacy service which have volunteers that can come help you fill in the forms.

Here is a link to information about Advocacy via a post I wrote on here a while ago;

Having someone you can explain your symptoms to, may help you to organise your thoughts to fill in the forms. Also a top tip if you dislike writing and worry about mistakes , the ESA form is available as an downloadable document which means you can type your answers in it. Print, sign the declaration by hand & date pop in an envelope to send recorded delivery. This is what I did and no need to photocopy it as I have it on my computer.

Apologies for the long post, if you need to find out what benefits you are eligible for you can contact Citizen Advice Bureau (CAB) for an appointment and they can go through your financial situation and provide you with this information. If you contact the CAB after your local MIND that is if you have decided you may like to use the advocacy service (if available) the allocated person may come with you.

Lastly as i say if you need any further advice about employment issues, benefits or Fibro, please email me at

Hope this helps.

Emma :)

P.S Can be even more of a chatterbox in real life if you can imagine that !! :D


Thank you so so much Emma !!!


No worries, your welcome :)


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