Fibromyalgia Action UK
40,297 members52,399 posts


Hi All,

Well here I go again filling in this very exhaustive DLA form, its like writing an essay. I keep having to stop cos my hand gets very painful.I hate justifying myself and my pain to people who frankly don't care or understand what we are going through on a day to day basis.

If I don't get it this time I don't think I will try again its too much hassle..Im feeling pretty low at the moment, and just to add to that my landlord has just told me that I have to pay the shortfall in my rent which was being paid with discretionary housing benefit.Its nearly £135.00 a month.... How am I supposed to pay that!!

The tribunal I had last time was horrendous, the so called lay Person was horrible, made

me feel like rubbish. She definately wasn't on my side, I won't put myself through that AGAIN

My doctor has written a good letter for me so hopefully that will help,just got to go to the library now and photocopy the form to keep a copy for me, that will cost a fortune!!

Sending my form in on Monday.........Wish me luck

Will keep you informed

Take care all, Hope you all have a relaxing weekend with not too much pain

Sue xx

26 Replies

Bless you I know exactly how you feel they treated me so bad at my appeal I swore I would never apply again, but someone somewhere keeps telling me to do it. I think maybe it's my subconscious telling me I'm entitled. Until this is seen as a real illness we don't stand a chance. I am appealing mine for the third time and have the help of my mp so here's hoping I wish you loads of luck and just remember that them that judge us have no right too until they have lived our life (( hugs )) xx


I feel for you I had to fill in my sons form a few weeks ago as he turns 16 but is unable to fill it in himself. He has aspergers and moderate learning difficulties... Fortunately after filling in the booklet took me over a week he got awarded the same rates indefinitely , now it will be my turn in a few months... Not looking forward to it one bit



I was diagnosed 5 years ago, had it for 7 years, applied for DLA 5 years ago and was so traumatized by the whole experience forms medical the lot, I was flat out for about for about 3 weeks after it with a massive flare up, I never applied for it again, I couldn't face it, a couple of months ago my adviser persuaded me to apply for it again, and I was awarded the lower rate mobility and the lower rate care component, they said they gave me the lower rate care because although its difficult for me through the night, I can manage, this is not quite true, but I don't want to rock the boat, so I left it at that, I have been awarded it for 2 years, the next time I will make sure they have all the true and full facts, I also am going to be penalized for having the 3 bedrooms ,I have told my landlord, that I need a spare bedroom for when I have a bad flare up, for someone to stay overnight to help me, they have sent a form out to me, to see if I qualify for a exemption on one of the bedrooms, I also have to get a letter from my GP stating that I need help, its a bit of a joke, I have been awarded DLA and I am going to have to pay it to my landlord.:(

I hope all goes well with your claim, you have my full sympathy, but stick with it,and keep us posted.(((SOFT WARM HUGS)))


Just to put things in perspective. I have a friend who has Spina Bifida and hydrocephalus..

He has just had DLA taken off him....because she can use a telephone and a keyboard.

So I am warning you, don't expect anything....

I am thoroughly disgusted, OK so my type 1 diabetes, postural hypotension, painful diabetic neuropathy, fibromyalgia and RLS got turned down, I can suck that up, but this man is bloody wheelchair bound and passes out if ever his shunt gets blocked - often without warning - he was going down a hill with his shopping last week when it happened.

I think you have to been a quadruple amputee to get anything nowadays


Go to the job center and ask them for a new form and tell them you have.messed the form up then get someone to copy your answers and get it checks by a close friend.

It took my 15 hours over a month to fill my form and that was in.bursts of a minute or two sessions as my hands are so painful, like yours and I suspect many members on here x


This Really Saddens me ! I am going through the same right now with D.L.A ! I had to fight to get my E.s.a which left me exhausted and ILL , Yea I do appreciate their are people out there who milk the system ! But they dont seem to take fibromyalgia into consideration at all ,Even with Doctors notes etc , Its no wonder we feel ill and exhausted all the time ! No -one seems to listen ! I even have problems with family members who accuse me of being lazy when i spend days in bed sometimes in pain and exhausted ! Lots of love to you all xx


With DLA the award is supposed to be based on what you can or can't do rather than on a specific diagnosis of an illness or disability. FM is supposedly recognised by the DWP and this is the information they're supposed use with regards to assessment/decision making:


I had to do my second one in 12 months the other week and my GP suggested a lady from the surgery could help me fill it in as I have trouble writing for more than a minute or two and as we know this is like writing a book. She does this all the time and came around and it took three hours to fill in. describing my inability to walk more than a couple of yards and how I can't lift things, even the kettle or a cup sometimes. I've fallen indoors and out frequently and have to cope with climbing the stairs to my flat, which takes ages some days. I cook microwave meals mostly becasue it's too exhausting to make a proper meal. It takes ages to get up get showered and dressed and often I can't even dry my hair. Of course they turned it down again. Their reason, I can cook a meal, climb the stairs, get in and out of bed and there is no danger of me falling???? Thet also refererred to te the ESA assessement I had on Dec 27th!!!!! Still waiting to hear the resule ot that.....well in writing, it's obvious what they are going to say.


I hope you had advise from a benefits advisor on the form filling. CAB people are very good as they know the system.Do not be off put we expect to be turned down as what they want is for us to go away! If you have healthcare professionals other than GP talk to them also.



As they say encontinent!


Ive just had the DLA tribrunial. I felt that they wanted times and dates to when I was effected by the fibro. They even measured the dustance from where I was dropped off to the court house. They spent (what seemed to be) a conciderate amount of time asking if I could use a spoon and how I would used it! I am a single father to two daughters - my daughters and my elderly patents help me a lot. I felt that they broke all the answers into daily and weekly segments and wanted to know what I found difficult only to go further asking how many times in a day/week/month.

I had been in full time employmemnt since leaving school until 2009 - with a good work and attendance record. I have never been the type to shy away from work. The simple fact is I cant.

I tried to save them time and had a friend help me type up a detailed list of my condition, the effects, my daily routine, my meds and what the side effects of the meds have. They didnt read it and were more interested in the person writing the letter than what I was trying to tell them.

My specialst wrote to them and commented that there was a high likely hood of anyone with long term fibro returning to work. He even stated that I had limited mobilty.

I felt that the medical advisor on the panel was a None believer in Fibromyalga (as I understand some doctors quiery the condition), that this was possibly inflenced the panel as a hole. I felt that it did not really matter what was presented - the panel had made up their minds before hand. Unfortunately I have no proof of this and it is only what I felt - They didnt reaaly take any notes of my father whom attended with me when he spoke.

I felt it fell on deaf ears. I dont have any faith in the DLA, ESA or the system that it represents.

I will still fight the system.

My comments are what I believe and how I feel due to recent tribrunial events


Considering this is a "stand alone" benefit, surely they cannot use your ESA assessment as evidence because you are supposed to be able to get this benefit regardless of whether you work or not, and the criteria should be different so being able to use a telephone should not even come into it. It is a benefit that is supposed to enable people to work or make their live as comfortable as possible, that is what the mobility component is for, to enable people to get about and not be stuck at home.

I have applied for rejection 3 times and on the last time when I asked them to look again at it I then got it, even though all I have is the lowest care component even though I rarely leave the house and can barely move most of the time.

Best wishes and warm hugs to you all.


Hi i would just like to say i had dla use my esa medical as part off here descision on my claim at the time i was just waiting on a tribunal date for my esa appeal, i asked if they was able to use the other benefits medical and was told that yes they could if they felt it was needed and as my esa i had 0 points dla refused me point blank!!! I won my Esa appeal and was awarded 19 points i think i informed Dla and they still was not interested...

So yes apparantly they can use other medicals and in my opinion if thwy can do this then why do they put us through seperate medicals. Ive now had my 7th atos doc come and see me in 14 months and am awaiting on dla descision.



I'm sure there was a mention of this at the recent Work & Pensions Select Committee - I'm sure the members of the committee said that they had heard about ESA assessments being used in DLA decisions and that this should not be happening. I'm also sure that the Minister said she wasn't aware that it was going on but I shall go and have another look at the video to see if that's the case and report back!


Found it in Hansard!

Question 48 of the meeting raised this point.

"Minister, you were very clear that ESA, the WCA and the PIP assessment, in your own words, were two very different assessments with two very different purposes. Can you, then, give us an assurance that, in terms of the initial PIP assessment, perhaps when they are deciding whether people should or should not be eligible, that one will not be used in the other, because at the moment there are people who are having their application for DLA turned down, the decision for which has been influenced by a WCA. . ."

The reply came from one of the Minister's minions:

". . . there may be evidence from one assessment that could indicate either an increase or a decrease in needs for someone’s entitlement to DLA currently or in the future." . . . "But I think your point is a well made one; we should not simply be routinely taking the outcome of a WCA and then applying it willy nilly either to a DLA assessment or, in future, to a PIP assessment."

One of the committee members then said "It might perhaps be useful if we had more information on the degree to which that does already happen in the DLA, because certainly advisers in my area have reported that that has happened on numerous occasions."


I believe they don't want people on DLA. I have been fighting for 14 months now my application had just gone off to the Upper tribunal appeal. They challenged the ESA report which signed me off ESA for 14-18 months and said they assumed the ESA Dr thought I had a serious heart condition. I have Cardiomegally ( an enlarged heart). I am currently waiting for results to see if I have angina but cannot submit that as its after my first application.

They said there is no reason I should be breathless when I walk. Yet cardiomegally causes breathlessness as does asthma, I have Fibro, Under-active Thyroid, Cranial Neuritis, severe arthritis, asthma, spondylitus and Cardiomegally as well as urinary incontinence.I also suffer depression which my Dr says is serious but the DLA decide I do not take enough medication. I have just recently finished counselling and have been to the hospital through the crisis team for feeling suicidal because of the attitude of the DLA dr and the stress all this has put upon me. No employer would employ me in my current condition. I often get chest infections.

They are soon to change the DLA to PIP which will be harder to get and reduces the walking distance to 20 metres.

There are people who are claiming falsely but I am not one of them. I have been told they want you to give up. the upper tribunal asked for you to challenge the decision in Law. I couldn't get to see a solicitor. I saw the CAB and they did help. I found online a copy of the disabilty Law service document - DLA How to make an appeal, For the upper tribunal the following errors of law are accepted...

What is an error of law?

a. The tribunal were wrong in there application of the law, i.e. it misinterpreted a

previous decision or a statute.

b. There was no evidence to support the decision that the tribunal came to.

c. The tribunal made decisions after getting the facts wrong in the case.

d. A breach of procedure/breach of natural justice, for example: irrationally not

allowing an adjournment; not allowing you to call witnesses; no interpreter or bad

interpretation; you did not get notice of the hearing; you did not receive the

Department of Work and Pensions’ submission; you asked for an oral hearing but

one did not take place.

e. The tribunal did not give adequate reasons for its decision.

f. If the Tribunal accept a government Medical Report such as one performed by

ATOS Healthcare over your GP’s medical report without giving good reason.

Not an error of law

It is not an error of law if a different tribunal would have come to a different conclusion

but the original tribunal did not make any of the above mistakes.

I claimed on points b and c. I hope its enough this time or I have to start again.

good luck with your claim.


I applied about 4yrs ago and was turned down then after others told me I should apply again I did last Nov, took me weeks to fill out the form and had their decision this week and as expected they turned me down for everything, the reasons they gave for turning me down completely contradict what I'd put on my forms!! I wasn't going to appeal but I've decided that I'm not just going to let them turn me down and make me feel that I'm lying about my health so I'm going to read everything I've got about appealing and then write my letter x


I wish you luck, your going to need more than luck to get past these vultures who are getting paid lots of money to fob us off. I have just recieved the forms and im gutted to see if you can make yourself a meal, climb in the bath, or walk 100 yards without need of a wheelchair, you have no chance of getting a penny. Ive decided not to go a head with it, even my husband treats me like im a fake, so what chance do we have of convincing these robots to listen and care about us. In the last 5 years my jobs have changed ffrom being a Recruitment Consultant to a receptionist to a house keeper in a hotel for min wage, then to a support worker for 6 months, then to telesales at a dying business to having no job !!!

Do they really think people puts themselfs in this position through choice, no its because i cant work 40 to 50 hrs a week.... Im now unemployed and looking for work again!! I cant believe how much my life has suffered through having fibro and ME. What the hell is wrong with this country... My doctor is sympathetic and has just refered me to ME clinic, supposidly to learn how to manage my condition!!! if only it was that easy.

I sympathise with you about your rent, Im lucky enough to have a husband who family wouldnt let us go without but when you see people who are getting everything and you see them gardening, playing pool at the pub, i see one particular person walking to the pub most days with pool que in hand, and they have a disability car sat on the drive!!!

Its all wrong. Good luck with the form. Have you tried asking for DIAL to support you with completing the forms? apparently they are good but i think they dont have as much clout as they used to. At the end of the day the goverment has brought dr's and professionals in to throw everyone off the benifits, wouldnt be so bad if emloyers had to take on people like us but why should they if we cant work to a set pattern. I dont know from one day to the nest if im going to be able to get out of bed, let alone go and so a 9hr shift 5 days a week.

Good luck take care xxx


hi pet.if you go to the job centre they will photo copy for free x


I know exactly how you feel, they look at fibromyalgia as a nonentity, they think its a mickey mouse illness and I can barely walk and cant seem to get dla:( I feel like a prisoner in my own house (which I am:( ), I get so depressed and to make matters worse my five year old son has been diagnosed as having very severe adhd, odd , defiance disorder and conduct disorder:( , its impossible to get out with him as I cant run after him, Im trying to get the mobility component to get the car so I can get my son to school which is nigh on the impossible for me everyday and the school is ten minutes for an able bodied person toi get to, he races and runs but what Ive found is the dla seem to be waiting on a GP report, despite the fact he has psychiatrists has been put on medication the school put in a serious report, they seem to not want to contact any of the people that actually matter!! I dont know what to do my dla application has been turned down three times now and I took it to appeal but was bed ridden and couldnt go so they closed my applicationj down despite my social worker calling them and explaining the situation to them:( its disgusting


about no one believing that fibro exists.......i went to a nurse a good few yrs ago with a prob , nothing to do with fibro...she asked me if i suferd with anythng, i said yes fibro and she said, whats that when its at home......and i had to see a phyisio last yr for frozen shoulder. same hapend again, she asked if i had any illnesses...i said yea fibro, m.e. and the rest.........she replyed that fibro is all in yr head, its yr brain telling yr body its god, i wish i was just sore.....they should be training all nurses and physiotherapist amongst others about this condition......


You should refer them to the NHS Online Publication A-Z of Medical Conditions


Thanks for all the replies and advice.

Will let you know how I get on

Take care

Sue x


Hi dragonfly,

You should definaley not give up, i was turned down dla before christmas, diagnosed Fibro August, also have bowel condition, Fibro so painful and i find it hard to cope most days. i was advised to contact a law centre who have solisitors who specialise in benefits law and will help you without any charge, i phoned the one nearest to where i live and talked to a solicitor on the phone and the advice and help i got was excellent, they will help you to fill in forms and go with you to appeals and tribunals - just type in law centre and your local area in google and they will come up. they are very helpful as they know the law, he told me that we are entitled to this benefit by law and no one should give up as it is our right to get it. i hope this gives you all some encouragement to keep going for what is righfully yours. Good luck dragonfly and let us know how you get on.



Hi, i would just like to say ive been trying to get dla for he past 3years with no luck at all, in the past 14months i have had to go through 6 medicals from atos 3 off those was from the same so called Dr who on each medical wrote somethig completly different to what i had said and kept contradicting himself for example he wrote i could walk 200 meters with no help (i cant as use a wheelchair) then on the next i had 3 months later he wrote i needed a wheelchair and he could se i was in a great deal off pain and have needed so for the past 12 months!!!

I brouht this up with Dla and they still over looked it....

In november i had someone from a charity come to help me with the forms as im getting a lot worse we came across a site on the net that says if the benefit system do not believe us then there was something we could print off and send it basically said that fibro was real and is being more reconised since 2009 and that the benefit system should be more aware off this and gave a lot off facts regarding Fibro and M.E. I sent off many off copies in case they said it was lost etc, they contacted my gp consultants, ot, physiotherapist and still could not decide if it was enough so have just had my 7th medical from a very nice doc and will see what comes from this....

I do find that im being penalised purely because i had worked for 10 years prior to this awfull illnes as i have been asked many off time "well u have worked before why not now" that annoya me soo much... 1 last thing if u suffer depresion and anxiety i was told you qould gwt dla higher rate off care and MOBILITY???? straight away with no question. I now know this is true as ppl i know have done this and was awarded first time and with in 8weeks off putting forms in.....

I hooe we can get some more awarness off this out there so ppl and benefit ppl know that its real same as some other profesionals.

Hope u all get something sorted soon



I would also like to ask does anyone with fibro suffer with there hips poping and causing a great deal off pain. This started a few weeks ago for me and is not easing at all.... Oh and i should have said this before when having a medical its best if u can to record it. The first medical i had the lady never knew anythig she even had to keave to ask what would cause me to pass out... And there suppose to be docs!! She asked me if i was to walk to my nearest Tesco how long would it take i replied "i am not able to do this as it is way to far for me to walk but a fit person could poss do it in 45 mins to an hr" she then wrote and twisted what i said and put i can walk to my nearest tesco at a normal pace taking around 45 mins!!! I never recorded that examination as i was not aware off what would be happening and since then i have recorded everyone and made sure the docs know so they cant twist anything... Atos is a money wasting project who basically dis believe eveyone we see on a daiky/weekly basis..

I watched he documentry on Atos last week on bbc 3 was very interesting if anyone missed it and can se it on repeat. :)

Sorry for rambling just wanted to put my experiances across my partner is writing most off ths and im asking him to write it as i cant cope even he has a head ache now lol

:) xxx


I'm in the process of appealing against the DLA and their decision to take away my mobility award. I have gone to the CAB for help. They have been pretty good, but given me a form to fill in for them, it's like the DLA form been at it most of the day, as they say they need an in depth account of my every day, I know what I want to say it's just wording it on paper. I suppose when I think back to my forms my answers weren't in depth because there are so many, you just want the forms done so hence the appeal, so remember when filling them out make sure you go in depth. Good luck x


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