Fibromyalgia Action UK
39,172 members51,349 posts


If they say stress is not good for fm then why do they make us fill in lengthy forms go through appeals and now are about to change all benefits to a universal one , just finished my ESA now on a tax credit form which is doing my head in and soon it will be the plp my anxiety attacks are getting worse , I hope other can cope better with fibro fog and hands that can't write it's worth a laugh x

10 Replies

Well hey there I get that, two days ago I was in a mini easy spell, then the DSS set on me and I can't use one arm, loosing sight in one eye and right leg limp and all in all in terrible pain. Guess they just enjoy seeing us suffer a bit more.

So sorry your having more of the DSS crap hugs xx


Hi there - poor you - there's nothing funny about what is happening to anyone

with fibro - but good for you keeping a good sense of humour!! I sometimes

wonder if these forms - which seem to be about 5k pages - are not deliberately

designed to dissuade us!! Good luck with everything. Here's a hug



The long forms are the first hurdle in the DWP's ambition to have zero submissions for any sort of benefits.

Julie xx


I was actually told by someone who works on the statistics that there is a number statistically that they have to turn down for benefits. I would like to say I don't believe it but I actually do because they have no heart and we are easy targets the disabled.

Prehaps if we stopped wasting millions on flying cammeron all round the world, (is he ever at home?) we could afford to look after the ill. With all the thechnology in the world I am sure he doesn't have to keep having jollies here there and everwhere, don't recall Brown always being out of the UK.

I call Cameron the moron and the lib bloke the gimp, fair in my eyes as they both couldn't fun a corner shop let alone a country. I am not political as sure don't think Labour are any better these days, they all seem to be public school people and have no idear what it is like to live in the real world in constant pain.

I feel sorry for any canvasser who knocks on my door next ellection thats for sure,


hello i am new to the site , just joined today. Can i just say that i was actually penalised in having filled my form out , it was used against me and the comments were , able to fill my form out myself and in sending in an appeal was able to describe my illness in great depth so many pages long which they tried to use against me where my hands are concerned and also my cognitive impairment. They are bloody idiots , it took me over a month to do that form, i cant bare looking at it let alone filling it in. And as far as me being able to describe my illness in great depth , well of course i am able to do that as its very much in the forefront of my head with all the symptons and pain i suffer day after day, night after night


In answer to all of your comments, Summer13, I agree completely. We struggle on for as long as we can, but this is so often used against us. The fact is, they claim that they are trying to weed out the people fraudulently claiming disability benefits, but those people know how to play the system - they're already doing it! Those people who genuinely are disabled try their utmost to keep going, and not give in until they have no alternative, but are punished for doing so.

I have heard from a disabled patient that the trick they are using at the hospital near my work is to put signs on the lift saying 'out of order', and catch people out who struggle to use the stairs! I don't know if this is true, or a local urban legend, but from the stories I've heard on here, it doesn't sound out of character!

Sara xx


ooh and i would just like to add that i was told i need to learn to manage my pain better ? what the hell. I was then put onto a pain management 6 week course or i wouldnt get my ESA


I've been penalised before because I can't tolerate most medications. I tried everything available when I was first diagnosed and nearly ended up in hospital from the side effects. Went through something similar a couple of years ago with latest medications so at least I now have the support of my current GP who said himself that I manage better without the pills. I got turned down for DLA years ago because they said by 'refusing' medication I was deliberately not getting better, their other reason for refusal was that I was managing to get my (special needs) son to school every day - didn't seem to matter that was about the only thing I was managing to do!


Firstly, welcome to the site, which I find such a great source of support!! :-)

Like you I expect to be penalised for having completed my own form... I wondered if they would take that attitude!! Also like you it took me the whole time allowed to do it little by painstaking little - about 5 minutes a time. I was actually sent a reminder to get my form back in time, which just stressed me out even more.

In fact filling out their stupid form (which by the way doesn't even address on our problems) actually landed me in hospital with a nasty infection in my right arm where I have lymphoedema. Apart from the general increase in pain that I had from sitting repeatedly in one position & writing - I had to increase my morphine to do it!!!! My right arm (I am left handed) became infected as the lymph did not move & was noticeably worse just where my arm was bent to hold the paper flat!!!!!!!!!!!! This was despite stopping every 5 minutes or so & trying to take care...

Yes, I think I can honestly say that DUE TO FILLING IN THE FORM I spent 10 days in hospital, then had to have lots of follow-up treatment with IV antibiotics, blood tests & further hospital admission to be given Penicillin in "safe" conditions as I am allergic to it but it was the only treatment that would stop me ending up again in Critical Care!! All this would have cost the health service a few thousand pounds I expect. I stayed 3 days in Critical Care, then a further 7 on a general ward followed up by another 10 days of out-patient treatment!!! Apart from all the admission tests that have to be done & all the other treatment I had intravenously, I was given 15 treatments of the "World's most expensive antibiotic by IV. At nearly £700 a treatment it wouldn't have taken long to put the total costs of my treatment well into several thousands! I STILL have to go back to hospital for further tests now so the costs are still mounting...

I think it's disgusting that they've told you to "manage your pain better!!" IF they have special knowledge on how to do this that actually WORKS I would be very surprised. There are pain clinics all around the country who work with people living with chronic pain... ... ... do they know something that others don't???

After attending one of these pain clinics I've been told that there IS nothing else that they can give me..., that I'm "probably on the best medication & management possible". To arrive at this conclusion I've endured months and months and months of my medication being tinkered with, which has of course resulted in escalating pain, a lot of withdrawal only to go back on the stuff in the end & fatigue troughs like you wouldn't believe!!! Each and every day has been a total struggle and for what? Well, at the end of of all the expensive "pain management" they've come to the conclusion that I do pretty well and that I'm on the best treatment... It has only taken a year for me to be told that!!! =-/

Yep, it makes me MAD to hear this sort of thing still being said to people - I'd love it if they could try living with chronic pain themselves as we do... NOT just for a day, nor a week, not even a month but for at least a year where it really tests your ability to remain sane!!! If they think for one nanno second that people who suffer as we do are not TRYING to find this Holy Grail of "pain management" then they're more stupid than these ridiculous, brainless & totally unfair ESA assessments!!!!

... ... ... getting off soap box now & smoothing ruffled feathers... AND sending you every good wish. ;-)

Please let us know how you get on Summer13...

Gentle Hugs xx


I'm dreading the next set of benefit forms, they now have me a such a high level of anxiety that I don't cope well with ANY paperwork anymore. Currently I have two sets of forms to fill in for Uni - one for my grant and the other for my Disabled Students Allowance (DSA). Hardly seems worth filling in the DSA form as I'm still waiting for outstanding money they owe me from the last 3 years... but then on the other hand if I don't fill in the forms, I won't get my wonderful helper either and I really couldn't cope with my studies without her, not only does she help with note taking etc, she also hauls my books and camera gear around all day.


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