who here in the U.K, who has fibro, is getting DLA (DISABILITY LIVING ALLOWANCE)

I am in pain every day! i am unable to work due to the pain but i have been refused dla is n e one getting this or am i wasting my time??

43 Replies

  • I was takenn off DLA last May cos I can walk with the aid of crutches I am waiting for a Tribunal to see if I can get it back, I lost my car and a lot of money that I relied on. Fibromyalgia has now been classed by the DWP as a disability so I cannot see why you shouldnt try applying for it.

  • i got refused last year but thanks that makes me feel a little more hopeful xxx

  • Hi Lisa, i have fibro and i am getting DLA it took me a while to get it, i was refused untill i was asked to go to a medical by the DHSS and asked for a home visit, after this visit i re-aplied and had no problem getting it.

    Some people get turned down more than 3 times but just keep appealing the eventually you should get DLA.

    All of the best, keep your chin up

    CHORLEY :)

  • Hi

    I suffer severely from FM and arthritis. I have also lost 46% of my hearing and currently using hearing aids. My FM is debilitating and every day is a struggle. I am currently on Gabapentin for a months trial. I can't focus, can't sleep at night and have constant pain. I feel drowsy and sleepy during the day. I have more bad days than good days. I am struggling to find a job. I am highly skilled. Could you give me an indication of what type of disability you get money wise? Is it worth claiming?



  • I applied twice and was turned down. I applied a third time and completed the form on my own over the course of 3 or 4 days and filled in EVERYTHING for a worst day. Luckily I'd kept a short diary and was able to refer to the problems I come across. I had a GP visit me yesterday on behalf of DWP to make a report so just got to sit and wait it out. I don't know a lot of people who have been given it. I live in Hull, E.Yorks

  • good luck Nicola hope you had an understanding doc visit you as I did the second time xx

  • I'm not convinced it being based on your lack of ability and illness but where you live and what medical joke of a doctor or staff member that makes the decision .I applied once for DLA with two spine curvetures, a hernia, fibromyalgia and irritable bowel syndrome got turned down have not bothered since, Then my medical for being on ESA consisted off wriggle my fingers and toes gently then raise both hands to touch my shoulders slowly and gently , bend forward three inches slowly and gently, lay down on a couch provided and lift my foot 3 inches off the couch ... I was not let to be able to speak each time I tried to speak I was loudly spoken over I knew within the first very few minutes this medical is a complete fix and i would be found fit for full time work yep I was .... funny thing was, I was dismissed from my 18 hours per week job as I could not for fill my job role because of the pain and fatique and the time off for being ill but after the medical I was found fit for full time.... even funnier the job centre put me down for driving work as one of my choices, when I gave them a letter stating my current daily dosage of medication to which was so high I gave up my own car as I was not safe to drive not by my own judgement or legal by law on the road 50mg sleeping tablets, 60mg cymbalta, 1200 mg gabapentin, and up to 8 per day 50mg tramodol obviously there is know way I would apply to drive any vehicle personally i think the whole carry on now with benefits for genuine cases is discraseful but what can you do..... I say If you feel you want to try again do so personnally I'd rather go without because its not worth the added stress and upset begging for something that should be there in the first place

  • Get welfare rights to help. They will do there very best. They won't miss anything.

  • Where is welfare rights please

  • I get both but it was the help of my friend and my drs that helped me.

  • i do know of some who get benifits and others who dont it may be a fight but try what you got to loose

  • I heard that DLA is refused so much because only 20% appeal against the decision. Most are given it at appeal. There was a Commons debate on the effectiveness of the first application so maybe they will be better now. I had DLA stopped 6 years ago and it took 8 months for the appeal to go through where it was given again. This month it stops so I now wait for their decision.

    You must do the forms as if on your worst days and try not to get overwhelmed by the form. Put down all the problems you have because of fibro not just writing fibro. It must be spelled out as the assessors will not go to their check list and assume you have all the problems. Good luck and keep trying.

  • I have just ben refused DLA for the 2nd time,I am now having my case reviewed again,I told them it takes me 2 days to change my bed linen,and they said that wouldn't come into the claim.They also said that when I fall over no one is in danger.....hello! what about me? I also asked for a medical and was told I cannot request one. Its also been said that it depends on which part of the week you make your claim,before Weds yes,after no!!

  • I am! I think that they are beginning to cotton on to the fact that we might ACTUALLY be suffering real pain & that it's NOT in our heads!!!!!

  • Hi

    I also have Fibromyalgia and ME and a few other problems. I was also turned down several times when I first applied but since '98' I have been getting DLA with themselves upping my care componant to high rate and high mobility. This recent renewal I have an Indefinate award come through.

    So please don't give up, it is worth a fight and get support from your local welfare rights helpers or support workers who work within some housing associations and don't forget your OT They are a great force against the DLA... Good Luck!

  • can you please tell me who the ot are thankyou

  • i was refused until i got a welfare rights officer involved soon as i got them in they filled out forms and i didnt even need a medical got it straight away have had 3 re assesments, had welfare rights do the form every time and have now got in continous no re assesment, that is until they bring in this pip thing and find away of taking it off every1 again. Welfare rights officer are with social services

  • So do you just ring social services? May sound stupid question, but I applied before Christmas and was turned down, I have appealed and have sent a letter from my GP as well. I do work but have cut down from 5 to 4 days and am struggling with finances. I wish I could cut down to 3 but not sure if work would still employ me and def couldnt manage without the money!

  • hi lisa, I get Dla care & mobility, I was diagnosed with Fibromyalgia 12 years ago, i used to have to apply every year but 3 years ago they gave me an indefinite award, Keep fighting for it as you are entitled to it. Unless they have fibro they cannot understand what we all put up with, god bless you x

  • Hi LisaJ, i have yesterday been informed that the exceptional letter that my GP sent in, and the hard work my CAB disability legal adviser Sally did (analysing my DLA form, dealing with my appeal on my behalf) has paid off. My DLA has been reinstated at the same level is was before (high level for care and mobility) after losing it in November.

    I wanted to post this to give other people hope. I was diagnosed with Fibromyalgia 8 years ago, and CFS 25 years ago. I also suffer from regular migraines, sciatica, a dodgy knee, and possible Menieres which affects my balance a lot. i actually typed up a lot of the answers to the form in Word files, so that i could come back to it and edit it when i had the energy, or remembered something extra. Even doing that, i only just got the form to DWP in time for the deadline. I put as much detail into my answers, even if i felt embaressed at how personal the information that i had to give. They dont just want a list of symptoms it seems, they want to know examples of how much this affects you in daily life, and to give detailed examples.

    I hope this helps, My carer (mum) now keeps a diary noting dates of every flare up, and i am now flaring up more often, because of the stress this process has affected me, but i am glad i appealed. as long as you have the right support and advice, it is possible, be strong, and dont get disheartened, there are sucess stories - not many, but enough i hope in the end to make the government officials see how bad these 'invisible conditions' affect us. sending hugs to everyone going through this painful and upsetting process xxx

  • Just noted you're possibly having Menieres. Do you have constant dizziness or does it come every now and again? I woke up completely deaf in one ear with loud tinitus and episodes of being dizzy so was thinking I might have Menieres. Would you know why people get this? x

  • I have DLA, both high rate mobility and care, i also have hypermobility syndrome and ME as well as fibromyalgia

  • I am having a medical on Monday to see if I am entitled to it, at moment I get esa. I have cfs, fibro and an underactive thyroid. Any little stress, lack of sleep or extra running around just makes it worse. I will let you now how I get o next week x

  • I receive Incapacity Benefit and DLA (lower on both) and I didn't have to appeal either.

  • Could I ask, are you able to get around ok, without walking aids or anything? Also, not being rude, can you 'manage' on the benefits? I'm working and it's killing me but I don't think I could manage on Incapacity Benefit or DLA. I've got the form for DLA filled in ready to send off but I didn't think I'd get it and I don't think I could manage financially. I'm a childminder and my job is really hard work, lifting the little ones is just so painful now, I've got fibromyalgia and osteoarthritis (and an underactive thyroid and IBS)

    I'm terrified of giving up work and not being able to manage financially. Think the day will come though when I have to give up as I have to work till I'm nearly 63 to get my pension.

  • do currently get DLA but I also have Osteoarthritis but that said it is currently under review.

  • I get high rate on both but i did have to keep appealing the decission all the way to tribunal. I know it is tiring and frustrating but don't give up. If you can get some help from CAB or similar it may help as they will know exactly how to word things. Also send in as much evidence as possible with your forms. blessings

  • I have been receiving DLA for 4 years but I have just had my renewal turned down as they say I no longer fill the criteria.

    I have Fibromyalgia,multi cystic Liver and kidney Disease,problems with my heart and i now have arthritis coming in all my fingers.

    I have submitted an appeal and they say it will be 12 weeks before I hear anything.

    I do not understand how I have been receiving the full award and now I do not even qualify for the smallest amount.

  • feel for you i had DLA for 3 yrs then 2 yrs this renewal nothing and my mobility and problems are worse! I have gone from highest care and low mobility to nothing. FOr the last two years on and off have used wheelchair, dont have the strength to self propel and using crutches leaves me exhuasted.i hope you get a good result. everyone seems to vary so much think it depend who reviews the claim form!

  • I have Bi Pilor,Fibro get middle rate care & low rate mob..I was diagnosed with fibro in 2004, and with the Bo Pilor in 1994..

    I was getting high care..midle rate mob,When i added to my form in 2004 that i had fibro i got a letter saying i got low care low mob..i couldnt believe my money had droped with a 2nd illness,I apealed and got midle care low mob up untill last year when they droped me to low..low AGAIN..I can't do even a quarter of the things i cld do all them yrs ago..at the min im getting low mob midle care and if i loose it with the new change coming in next year i might aswell jus throw the rope up as some of my meds iv to pay for an my therpy iv to pay for aswell as it dosnt come under the NHS...when are these people going to listen to us???

  • Hi,

    I have Fibromyalgia, Chronic Fatigue Syndrome, Borderline Personality Disorder, Asthma and a few minor complaints. I have only been awarded DLA for 2 years, and it runs out tomorrow. I am still waiting for a decision as they have requested more info from my doctor. He was not helpful when I applied for a blue badge, I got turned down for that because of his comments he put on the form, so what chance have i got now!!!!! Very stressed with it all as I have a mobility car which I rely on, was told on friday by mobility that if my claim is not sorted out by the 12th March they are coming to take the car away. I am so worried that I had to give up by job as I can't concentrate feel so tired have no energy what so ever and not very stable when I stand for a short period of time. I went down from full time to 24 hours then down to 12 hours and still could not manage. I know that if they turn me down it's going to really affect me mentally.

  • Hi,

    Each time i claim for dla i have to go to local office in blackpool for a medical,i now live 7 miles away and wouldn't make it there,at moment i am awarded indefinite lower rate care,i have had a previous stroke and left with weakness,fibromyalgia,ostoearthritis,copd,i now walk with crutches thast when i can walk,am i right to appal to try and have this reviewed.wish i was able to work be a lot easier in life,i am also still on incapacity not the new esa so don't know what is going on.

  • See if you can get a home visits. And see if you can get welfare rights to help

  • Hi

    I just want to say that the government are cutting DLA left right and centre. As some people may be aware they are replacing it with PIP and have a target to cut it by 20%. There has been a huge campaign to keep it and The Spartacus Report was compiled by disabled people as a result of a Freedom of Information request to look at a sample of the responses of the consultation and showed overwhelming opposition to replace DLA which was 'buried'. This resulted in some concessions as a result of the debate in the House of Lords and a further consultation which closes on 30th April. If you are on on facebook there is a group called Spartacus Report and there are people on there working flat out to simplify the latest documents and questions so that as many people as possible can take part.

    Also, fibromyalgia and ME sufferers have been denied disability benefits in the States because of their policies to 'redefine' disability. The private health insurance UNUM are the company who have denied pay outs to thousands of disabled people in the States and yet UNUM Provident are doing the same thing here - already selling private health insurance to unsuspecting people ie they're cashing in on the cuts to welfare benefits which they have engineered. They are also connected to ATOS and Lord Freud has been involved in this since 2002. The reason I say all this is that it's nothing to do with an individual's disability and everything to do with demolishing the welfare state. I am also a fibro sufferer by the way. I get low rate mobility but that is for anxiety and phobias.

  • i did have to go to tribunal to get my DLA though, although i was on lower rate care and my GP felt i should be on middle rate, they refused and we fought them and it was bumped to high rate.. i also get incapacity... dreading the day it gets changed over to ESA

  • I get higher rate mobility and middle rate care. Ive had fibro for over 10 years with degeneration of the spine. Im in a wheelchair and i have care coming in once a day. It took me years to get my DLA. Ive had to have a home visit last month from a Atos Doctor. Who was very good.

    My thoughts go out to those who are struggling with this and wish you all the best. Keep trying.

  • Can I say .... That most DLA go through first time when you ask for your own doctors support. I knew a long time ago I had this illness, but have taken my time, allowed all the tests to check it is nothing else and then asked my doctor if is is FM and she says yes. The nest step is to get the DLA form and take it to the doctor and ask her to fill her bit out and ask if she will support a claim for DLA. You WILL get it if your own doctor supports your claim, they cannot argue with your own personal GP.... It is also true that you need to appeal and appeal again, the CAB are great at helping you with this... they like getting the appeals won!! Good Luck, fight back, be the person you are and not the number they made you be xx

  • DLA is not awarded due to any particular diagnosis, it's awarded on how you're affected on a daily basis.

  • I was diagnosed with fibro about 2005. I had an RTA the previous year and health problems continued had a previous RTA in 1997. Applied for DLA in 2006 after appealing forver in 2007 was granted high care and low mobility for 3 years . In 2009 the renewal was due, my HCP helped with the renewal within 2 weeks was granted it for a further 2 yrs allbe it the care part was lowered to middle. My mobility has worsened. have ruptured calf muscle twice within a year spent almost 18 mnths in plaster /special boot and crutches. became sevrely depressed as had to rely on my partner and mum who bought next door for evrything. was then found that an MRI had shows spinal cysts a few years earlier . this had been missed and foudn when the pain management clinic mentioned another mri. applied for DLA renewal august 2011... declined.. asked for review. nothing sent to tribunal. Gave them all latest dr info and consultant sent out and then told adjourned.. didnt even ask me anything! was devasted and so upset. Then told dr would visit! had a letter one week saying he was coming few days later. He came asked me to walk. held on to the bed and hobbled a few steps he told me to stop. asked lots questions, tried getting to to raise arms and lift legs up. said he would support my applciation but final decision with DWP! dont know what to expect i have read some get lucky others then find the dr didnt really support them. boy do i wish i could do verything i could before. I currently get no benefits at all lucky my other half works his socks off both at work and looking after me. if mum wasnt so near he wouldnt be able to. my car sits idle most of the time, rarely leave my home. has anyone had similar experience

  • WHERE ARE YOUR MPS in all this

    GET HOLD of them and SHAKE THEM

    they should be supoortive and part of the process

    ........................................ if they arent told how will they know.

    I WORE MP Ben Wallaces ear off, and used Mr Snipe from LCC Welfare rights my LonG term DLA got reinstated afer 18mths without it i was broke....and that 18mths was refundeded with interest

    FIGHT THEM and fight hard

  • Worth noting that they are looking for specifics on what you cannot do (I know, everything - but they don't!) and knowing FM is recognised, but mobility is a main factor, have a look at this:


    (dated 2012)

    There is now a call for people's opinions on how the system is working:


    (Deadline to add your comments is 12midday, 5th September 2014)

  • Hi how did you get on with your DLA I know its a while hope things did work out for you

    I am going to apply for the higher rate mobility I get higher rate p/c indefinite since 2000

    I have Fybromyalga BPD OCD PTSD severe depression and vulvadinya chronic overal body pain

    Can't take the sever pain need more help a bit nervous I have done the forms with a couple friends as Dial cannot fit me in till the end of September there is no one else in Dartford Kent to help its so sad

  • My Partner has suffered with fybro or over 15 years ago He was on DLA t some low life but some low life reported him about 5 years ago DWP did surveillance on him He had started doing as consultant had advised doing gentle excercise so he joined a seniors golf club He still had pain but gently played through it He was taken to court and charged with fraud He has to pay money hed had back and as lost all benefits What they didnt see was how he was the next day crippled in pain Apparently because when he filled in his first form hed said he could walk more than 100 yds without resting which was true but they said cos he was playing golf he could walk Hes on shed loadsof painkilers and relaxants They took benefit away but not the pain they tagged him from 7am to 7pm on a monday as that was the day he played golf

    We are trying to get an appeal even though out of time then hopefully will get the criminal commission involved At that time he had no one to fight his corner and had a crap solicitor Im now around and will fight for his rights but not sure if we can get it over turned Also suffers asthma and as an aneurism When ever he thinks about the case he gets stressed and the fybro flares up worse Any one got any info that may help us put a good case together

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