Fibromyalgia Action UK
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Sooo Disappointed :(

I went to have a health check in Feb for my ESEA ... got a letter last week sayin that im capable for work ?? Which im not !!! So they have stopped my payments and ive had to appeal .. my doc has issued me with a sickness certificate and agrees im not fit for work .How can they possibly assess you in 1/2 hour to come to this conclusion ??? its wrong !!!

Then yesterday I get a letter from housing benefit to say they have suspended my payments from 20th of Feb also because my sick pay have stopped ... so I have to sort that out also ... how do they expect me to pay my rent n billls ... they dont stop !!!

As if im not goin through enough then the stress of this on top ;(

They need to see me struggling doin simple daily chores round the house .. I had to give up my hairdressing 2 years ago now and I loved my work so much .. I am a single mum , so runnin a house is really hard wen you have Fibromyalgia , some days I just wanna sleep all day , or im in alot of pain ... these ppl dont see that , they just get you to do a few body movements , ask some questions and away you go ... I think they need to get assessments from my doc as he knows more than anyone .

Has anybody else had this problem ???

Hope you have a pain free day , would be nice huh ;)

Nice to meet you all .. ive only just joined this group ;)

17 Replies

Hi chezza,

Nice to meet you.

Its terrible what you have to go through just to get it through them that you are ill.

So sorry you are going through it.

I have been turned down for dla but i am going to reapply again now i have a specialist behind me, but i know it wont be easy.

I know what you mean about running a house and kids, i am n ot single but my partner works and that is hard enough.

My sister thinks i am taking too many pills but she would have to do more for me if i didnt take them, they just dont get it.

kel xxx


Hello Kel :)

Thankyou for the comment :)

I did manage to get DLA but dont know if that goin to be affected now or if I will still get it .. I hope so ..

I know what you mean about all the tablets .. I take so many and am also on morphine patches ( well they are brunorphine which is same family ) that I have to wear all the time ... even with all the medication im on I still have pain , but I would hate to think what it would be like without them ....

I really hope you get awarded the DLA ... you have to exaggerate ur symptoms .. even if your not suffering with it that day ... as fibro is different from one day to the next as you know ... I dont get many good days ... when I do I always seem to overdo things as is nice to be able to actually do something .. then I pay for it big time few days later :(

Good luck with everything n thankyou again :)

Take care

Cheryl ( Chezza )



hi diane here.. i am on fentanyl morphine patches to.. and oral morphine when i need it.. how do u find the patches???


Hi Chezza

I have been awarded DLA, i refused to go and see there Dr, i requested a home visit which i was granted, my wife took the day off work so she would be here at the same time as the Dr, when ever the Dr asked me to do a stretch or bending exersise i just said sorry i cant do that due to the pain, also my wife explained how bad i get when having a bad day...

So when you get another appiontment ask for a home visit, over exadurate all of your pain and have somebody there with you at the time of the visit, play on your illness but dont feel guilty or like you are cheeting the system as not all of there so called doctors even know what fibro is.

Hope this will help, Good Luck

Wishing you all of the best, dont let the buggers get you down



Hello Chorley :)

Thankyou for you comment :)

What I dont understand is ive been getting ESEA n DLA for quite sometime now ... the 1st health assessment I went to wasnt too bad ... ide even put makeup on etc as I was actually getting out of the house lol .. she did comment about that I looked ok but she has still awarded me some points ... so I was ok ... but .. this time I see this guy , went with no make up etc and he awarded me no points ??? I dont get it ... until someone experiences fibro they really dont have a clue wot we go through .. it is even hard for the ppl close to us who see it everyday to understand it properly .. it is such a hard thing to explain :(

I hate being off sick .. I would rather work .. I did my job for 31 years , why would I want to give up what I loved so much ,I know there are ppl that cheat the system , but for us that are genuine get penalised for it ... it not fair is it .

I didnt know you can ask for a home appointment .. we have to drive about 3/4 of an hour to get to the place so would be alot easier for me n my daughter who has to take me .

Thankyou again n nice to meet you ;) Take care

Cheryl ( Chezza ) :)



I've gone through the same thing...i got my appeaal tribunal next monday. It makes me mad because the questions they ask do not even apply to people with fibro...they do not understand that this condition varies day to day. I have 4 children and get alot of help from my husband but he can't do everything. I struggle to get things done, and can't do what i'd like to do. I cannot see how they expect people with fibro to hold down a job!

Big hugs to you x


Hi Nichola :) Thankyou for your comment ;)

Good luck with your appeal hun , I hope it goes in ur favour :)

I agree with everything you say .. I cant manage to do my housework alot of the time let alone have a job aswell ... sittin in a chair for half hour being asked question n do a few body movements is totally different to everyday life , but they dont seem to understand that , my daughter took me there n explained what it was like for me , but he still awarded no points to me :(

I really hope you get things sorted ;) Take good care :)

Hugs back to you (((0))) :) xx

Cheryl (Chezza )


I failed my atos medical in Dec, get your appeal letter in and sick note asap hope you have help with this, they stopped my benefit then my council tax and my rent. Oh and sent me a p45 nice hey ! Once they have processed your appeal letter they will put you on a lower rate esa, if you phone them from home get them to call you backnit is a 0845.

I had to get a emergency loan from them because the gap between the stop and resart was two weeks, if you do this have no eletric gas food and no money in you


Your bank, I have metered gas and eletric, they want you to be on the bones of your arse also it has to be two weeks after last benefit payment or you need to give them a detailed budget of where the money went.

Once they had sorted appeal form rent council tax was all brought up to date.

Good luck

You need help with the forms and appeal try citizens advice or a local disability project


Sorry the sick note is what gets you lower rate esa while you appeal, take this to job centre and ask for a copy for yourself, they get lost ! You may need to make an appointment to do this, my local job centre is run by Hitler :-P


Would be very easy to show them where £67.50p per week goes - nearly half of it went on prescription charges !!!


Well same here just been down housing benefit today (see blogs for today) i got call to say not all my rent was paid as my daughter now an apprentice she needs to pay hb and counmil tax which duurrr we not thick we know we waitinhg to hear how much been waitihg since 3 jan when she started and they were informed of it and had all stuff sent , but no one wrote to us so now i owe 116 back rent like i can go that asap!!!! been down today saw nice lady took all paperwork again and called housing to put them in pic so leave it all with them now but it bad enough living with fibro without having to deal with other peoples mistakes and we end up paying for them As for the going back to work !? well some days yeah you get up and are ready to do things but how long does that last ??? oh all of half hour if your lucky, there is no way i could work and speak to others on here they are the same good luck love and soft hugs Diddle xxxxxx


hi everyone.......

i fought for 2 years to get my dla... i would go down the road of appeal.. but ask them to send a doc out to assess u... but word of warning... they walk about ur house... to see what aids u have.... remember and leave everything u do use out for them to see.. if u need any advice i would be only to willing to help.. just post me a note... just sort of know what there looking for x like u all. i would rather work.. who in there right mind would want to suffer in pain day in day out, every night time in pain.. no sleep, and many side effects to all the meds we take... i just dont get it.. keep fighting. we need to do this all together.. or the goverment will never get this illness...


For anyone claiming ESA, if you have been claiming contribution based ESA and having been claiming it for 2 years or more, it will end at the end of April this year. Mine is ending then, you will be getting a letter and you will have to claim another benefit. I have paid contributions for over 42years but i can't have contribution based sick pay for more than 2 years..... Wonderful !!!!!!!!


I will lose mine in September as I haven't been on it a year until then. I have no idea what other benefits may be available to me after the Bill goes through. I've been refused DLA twice and will have to apply again I suppose or this new PIP as it will be called. I think it's a poor state when the people who have worked and become disabled are losing their benefits, when there are so many "lifers" out there who aren't really ill that will continue to receive payments. Will just have to wait and see now.


I know exactly how you feel, as I've also failed my medical and also my appeal has been turned down (I was awarded 6 points on appeal) I'm now waiting for a tribunal hearing.

What is so frustrating is they try to treat all fibro as the same and as we all know each and everyone of is different and suffers in different ways. My GP is doing a letter to support me...just imagine who in their right minds would employ me when I fall asleep in the middle of conversations, whilst eating and also when holding a hot cup of tea. I wouldn't employ me.

I'm also going to put in for DLA and I expect I'll have to go through all this again, it's demorolising I would prefer to be able to have good health and be able to work.

take care


I've been working part-time since Oct last year doing caring. Really tough and makes my pain much worse but keep on going coz I don't think I am "ill" enough to get help. Just collapse in a heap at the end of the day. No one understands what we go thru coz we look fairly well and just get on with things sometimes coz we have no other choice! I hope it works out for you. X


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