Hi everyone , this is my first Blog.

Never written one in my life , I can only just manage Facebook. Didn't know whether to write a blog or ask a question just to get something out there. M sat here in my house freezing because I can't affirm to turn on the hearing , just gone on sick and feel really depressed. Am not in any pain , had a seizure ( episode because waiting fir MRI scan) earlier today slept for a couple if hours then just managed to make done pancakes for my daughter . My wrist hurts Dnt know if its fibro or it's because it was bent funny when I went into the episode . Feel a big down reading all these comments from all you poor souls out there who can't get DLA and really need it . Panicking myself because I don't know how long I can be on sick . I can't possibly work , am ok after 10 am and then get wiped out after 1 pm . I walk down street out 15 mins then have to slow up takes me forever to walk to doctors . Felt so weak I can hardly get up the stairs mouth hurts when I eat . Am suffering with this thick feeling in my head . Eyes are watering just looking at this screen . If I had to work ad loose the job , they would sack me because I just wouldn't be able to do it. Worrid about working . Everyone says I can't possibly work if I don't get sorted . Doctor hasn't perscribed md with any miracle drug yet awaiting to see if I have epilepsy . If I have epilepsy that can be controlled but it doesn't look good for fibro. I beginning to worry as I've got so many weird things going on I feel like I've got some arthritic pain . Anyone one got DLA for fibro after the review it looks like there taking it off everyone who has had it .

26 Replies

  • I am so weak I can't even put clean sheets on the bed without getting hot I can't pick up the mattress to fold the sheet under its unreal weakness . I'm dredding menstration because its so horrendous and I am not going to be able to get out of bed. How can someone go to work like this. I can't so I know some of you folks are worse than this . Take care and thanx for reading my message x

  • Here is some info on Work & Fibro:


    If you want to apply for benefits, here is some info, including sources of specialist support:


    If you email info@fibroaction.org, then our Administrator Emma can send you out guides from Benefits & work (for free).

    It can be really tough, but it is possible to help to enable you to work or to get some benefits.

  • Hello and welcome to our lovely forum Jjojay, you are most welcome here!

    Take a look around our Questions, Blogs and Tags, there is a wealth of information there, advice, support, personal experiences and friendship too! Please read our FibroAction Guidelines, you will find these under Blogs at the top, please select FibroAction Blogs and then scroll down. We ask all our new members to read these, many thanks.

    There is also lots of info on our main site at FibroAction, please click on the link below to take you there -


    If you have any worries or concerns, please do not hesitate to ask us, we are always only too happy to help. We all understand, we are all in the same boat here.

    I hope you enjoy your time at FibroAction! :)


  • You have had two great lots of advice already and I really cannot add to that. As for your seizures, it does depend on the cause of them. My daughter has seizures but they are non-epileptic attack disorder, so there is no warning and basically no treatment for her. She gets DLA because this is unpredeictable and can happen at any time without warning. I would follow the advice above and then wait it out to see why you had a seizure. But try not to worry hunni as this often makes things ten times worse. Welcome and I will watch out for future blogs from you xxxxx

  • ozzygirl64 are your daughters episodes where she goes really dizzy and has no control of her balance or does she just go blank

  • Thankyou folks and I will take a look at the links, also to ozzygirl , if her seizures are non epileptic and there's nothing can be done that's really tuff for her, poor girl , I'm allways worrid to go somewhere alone at the moment , I've had 5 biggis and around four smaller in a year so I know how it feels x I can't go back to work because I'm so wiped out. My work is support worker for the mentally disabled. So I love my job, I'm so upset about all of this is almost incapacitated me . My heart goes out to everyone out there suffering with all conditions , always been aware because of the type of work I've done, but now having something myself that feels out of control , I have more understanding , if I can't go back to work I'd like to do something to help in some way . Thanks again people , for your support x

  • Hi. I had a DLA tribrunial last week and it was disallowed. I found them very hard work. Every thing I suggested as examples of my syptoms they tried to put a time scale on it and a value to how many times a week or month the effect took place. I had Dr notes, reports and specialest reports. I even suplied a detailed list of the effects of the meds and the effects of the Fibro. Even letters from family members explaining how they help me on a daily basis with housework, shopping and the children. My specialist whom has confirmed Fibo has told them that the chances of a long term suffer of Fibo wil unlikey return to work. The down sid eof the report suggests excersies. This they have put to giving a good reason to refuse DLA. Even the ESA want it disallowed as they say if doctors suggest excersise them you can return to work. I take every step with pain and discomfort - but they said I can still get around. I am a single father to two daughters 9 and 10. Again - as I have dependants they take this a evidence that I can self substain myself and therefor capable of work - and not considered for DLA or ESA. The CAB have suggested to go through the motions and reaply when the ESA is stopped. CAB explained that even if you are able to place a tick in a box or move a computer mouse - then you can work!

    I feel that unless you are totally unable to think, talk or move at all and act like a garden gnome - then you can not get the benefits.

  • Hi Gadget

    I'm just starting my tribunal process, Ive got an appointment at the CAB on Thurs, and I'm really going to fight this, as I had the high rate then they just took it off me, when nothing has changed in fact it has deteriorated. I have some days where I could spring clean my house, in my mind, but then to put it into reality I just sit and sigh and say once upon a time you could have now it will take you a month or so. Hope you get your award sorted sooner rather than later. I'm sure all these tribunals are costing a fortune so why not just pay the claimant their award it would prob amount to more or less the same.

  • hi,i just thought i would say,its not what illness you have,its how it affects your day to day living,i would ring dla for a claim pack and make an appointment with CAB or welfare rights,get them to help you and to fill in forms...x

  • hi jjoy , i know how you feel , its such a worry once you are coming to the end of your sick pay , i only have a few weeks left , but i have taken the information from this site , and its lovely to speak to everyone on here , i will soon be applying for esa but i have to wait for my boss to send me a ssp1 form so hopefully i can put a claim in , as for disability i was refused , so i appealed they sent me a letter saying it can take up to 11 weeks , iam looking to work at home , but there are so many scams out there , so like yourself im worrying what to do next x and gadget im really sorry u were refused , i think its disgusting these people sit there looking at you and judge ! they have no idea what its like to live like this everyday , and to even have all documentation from proffessional people stating you cannot work , and still refuse , is so wrong of them , i have been speaking with welfare rights gadget have you tried them , lots of hugs xxxxxx

  • Hi, find out if you have a DIAL office near you. I made an appointment with them and they really helped with good advice and filling in forms. Lots of luck x x

  • Its a nightmare ! Have been waiting for my appeal since I had atos medical in march ,I was awarded 6 points said I can walk 200metres ! I kneed a full left knee replacement might need a partial on right knee I have one kidney with a hernia .I have to drive as walking I keep stopping ! They make you feel like a crinimal gave up work 18 yeaqrs ago to care for my mum ,lost her 2years ago ,It is always the carers health that suffers ,They had the nerve to put down I have not worked in 5 years . I will be 60in april and miss retirement by 10 days ! This waiting is so deppressing good luck to all of you waiting !!!

  • I. Can not get a penny I coulc not work if someone offered to pay me a million pound a minute

    Yet my friend say herself she is better than me and she gets eighty pounds a week make no sense to me

  • I know what you mean..makes no sense!..

  • Hi I Am currently off sick.not sure if I can manage going back again,was doing 30 hours a week,getting full pay at the moment.was considering going back for 15 hours.but that's a big drop in my money.and I am claiming working tax credit which I would loose,don't feel up to it to be honest,and I retire in September.I have been to see the nurse at work.she said about claiming DLA.but didn't think I would be able to,I can take care of myself and get around,at a much slower pace then recent.feeling very stressed at times about which way to turn.due to see the doc again in a a few weeks and the nurse from work in 4 weeks,keep thinking people think I am dragging this all out,I have been really struggling this last year.have been with the company for 22 years.will get a full state pension.but that's all.no, private one, been so used to earning my own money.I also had a full knee replacement 3 years ago,which still gives me grief at times,and Arthritis almost every were am widowed,have a son home with me.who as just had big op on his foot and going to be off work for 5 months and on very low sick pay..How do one apply for DLA?..xx

  • Apply through Jobcentre Plus - and DWP. They will send you and application form.

    Birmingham office is Stephens Street near to Five Ways.

    You could try for additional benefits - Job centre and CAB should point you in the right direction

  • Hi Myrtil, sorry to hear you been having a tough time. By all accounts having spoke to all on here and reading their blogs, you can download the DLA form online. Take it to CAB , don't try it alone , seems people get a lot of knock backs if they do it alone. Try for it, you may get it . In scared I won't seems everyone is that's got fibro as well as other things too. But I will give it a go ,, x

  • Additional Comment:- I had described how every day life effected me, I took advice from here - writing to my GP and Specialist. I wrote to the tribrunial committee - they still questioned and doubted me - Even to the fact of how I stired food in a saucepan and a cup of tea. I was even questioned how I wrote the letter?

    The system is a joke -

  • Tell me about it!!..I went through so much with my late husband,he was disabled through road accident at 18,but later in his life things got worse,not only did he have a false leg,but also had to wear a full brace on the other and used crutches to walk,and one of there questions were can you carry a hot drink...WHAT!!.But cancer got to him at the age of 50,,died at 54,,x

  • Seems it is for many many people. How long have you been sick , is there know here else you can get good advise . It's almost like taking a driving test , having to give it another go, and like they can only pass so many in a day ,, sorry to hear things are hard for you , really hope you can get some help , your comment made me laugh,,,( tick box and a mouse if you can do that you can work,) how ridicules ,,what do they think we are , machines . My Grandad died in war left my Grandmother widowed all her relatives died in camps ( Jews ) , I know this sounds like a bit overboard , but we've all worked done our bit for this country family died for it ect,, if someone tells me I can tick a box and move a mouse , so I can work , think al go off it a bit, it's not as if am asking for a big pay out , DLA and benefits won't pay me as much as my Job did,, if rather work anyday . If someone can find me a job I can work from home in hours I am actually functional , I would be over the moon . Don't give up. Try get some advice from somewhere . Can you see a solicitor for free. Try , it's so unfair x

  • It's so hard without money, thing is when your sick your at home more, and heating is expensive . Then things get harder bills are coming in and I can't pay them the drop in money been on sick already has hit me hard . I don't think I can live in this house any longer ,,there's rent and heating bills. I wish I could go back to work but know they would sack me pretty quick because I'm useless after 1 pm , I had an appointment at 4pm today And couldn't walk down to the doctors , I darnt push myself because by time I got back I wouldn't be able to anything but lay on the sofa . And I'm sat here with gloves on because I'm so cold . I really feel for everyone out there who has had their DLA taken off them and can't emagine how life is, because I can't afford to go on like this think I will get even more ill because I'm so cold and Noway can't I afford a Sunday joint for the oven , I either eat well and stay cold or stay warm n live on soup I know without good food fresh vedge n fruit I will suffer with this condition . I can't even use cheap shampoo wash powder soap ect, I have to use organic my allergies are so bad , head itches like its on fire body the same . I can't use pads because of bleaching agents , I know this started with fibro. I can't afford organic food but try not to eat anything that's pre packed or with artificial or processed . This makes my Ibs unbearable . Money helps incredibly , but think if I stay like this I think al just end up on major antidepressants . I'm fed up already missing out on family events ect because am useless after 1pm , I would rather be as I was working and enjoying my job that I really loved. Coming home to my lovley Daughter and my two adorable cats . Plenty of money for heating and food . I wish I could go bk in time . I was a key worker for a lady with learning disability , mental health. I loved going to work. It's pretty depressing I know , and Thankyou for reading this , I just can't get over why DLA has been refused for some of you people out there . what gets me why has it been refused,, why would anyone make this up,, its beyond me what DLA assessors think,,because why would anyone want to live like this. I'm terrified because I may get refused and there won't be anyone out there that will employ me. Thanks everyone for all great advise and posts . I'm very interested in all posts put up on here because the more I read them it's making me more aware and giving me good advise. Also I know I'm not alone in this,,, x

  • Thanks for replying,I am managing at the moment,but worry about the future,and your never alone Take care..xx

  • I have now been out of work since 2008, and like you say jjojay the bills do mount up, and while I was waiting for all my sick pay etc to be sorted we got in financial difficulties even though my Husband works all the hours he can, it was like robbing peter to pay paul, so credit cards mounted up so now got debts around my ears to pay, doesn't help that DLA have taken my mobility off me so I'm £200 a month down, makes a difference when esp in this cold spell and you have high gas and electric bills and other bills. My motto these days is never take anything for granted, we thought we were doing ok, both working full time, kids growing up nicely, so decided to do some home improvements that we couldn't afford when kids were smaller, then bam I have to pack in work, one wage bills and home improvement loan, that we stupidly took out in my Husbands name only Why ? will never know and have to live with that as sickness insurance was in his name only so couldn't claim. I have def learnt the hard way.

  • Hi pepper flo ,, it's not letting me reply only leave a post so hope you see it, read your comment . It's not easy is it, thing is what do you do when you have to pay loans off ect and try to still live . I understand I really do. I can't pay for some credit I took out. I've written to them and offered them a small payment because everything is mounting up now. I can't even get my head round most things , it's like there's a fog there when I look at a letter . It's just criminal how your being treat , they've taken Away your only means of living like an average person. It's not like 200 pounds is an enormous amount . Maybe to you but I rekon it's a drop in the ocean to them . I've seen in the past those who claim for it when they've not needed it. Although I have thought on , that I maybe don't understand the surcumstances . But being in the predicament myself now . I can see clearly the need that something has to change. There's people out there that absolutely need the support . Something has to change . I could get hyperthermia if I was an aged person , I feel like N aged person in my body . I emagine there's not much difference there yourself. I am going to citizens advise tomorow to see if I can get all this paperwork together DWP have sent me a questionare , something to do with working. Why would I have a doctors note if I was ok for work, I've tried ringing I was on hold for 20 mins I just hung up it useless trying to talk to these people. It all adds to the stress. Which only makes our condition worse . Can you appeal to their decision , if so try CAB. They are pretty wise and know all the loop holes. So I've heard . I'm not going to deal with DWP alone . I exspect the worst if I do , as I can't even read through the forms myself now. Can't get over how bad I've become , from an independent person a full time job , to this state. I feel like I've been treat like a scrounger whist I've been on sick and I don't feel I've got much support or information from outpatients at hospital just a small booklet outlining the condition . I really feel for everyone suffering, and having to deal with the DWP . X

  • By the way , when I meant people who claimed but didn't seem they needed it I never meant yourself lol, I meant the ones you see who are drinking in pubs and climbing ladders , lol , it's like we're been discriminated againsed with these questionares ect ,, interviews , yet still we can't access what's needed. X

  • If anyone watched Panorama tonight, I think it answered many of our questions as to why it is so difficult to claim disability benefits. According to TRIAGE, the people contracted to getting disabled people back to work, they have a special tag for us - "LTB". Apparently, this stands for Lazy, Thieving B.....s (I won't print the word out - it was bad enough to hear it!). This is clearly what is thought of us and being disabled, injured or ill means we are fair game. They are going to make us fight for every thing. I hope that one day, those in power and those deciding on our futures (such as Capita and Atos) will be wearing our shoes. I wonder what their label will be then? xx

You may also like...