What can I do? Doctors disagree with me, DLA dont care. HEELLLLLPPP!!!

Hi, My nameis Suzy and I am a newbe! :)

I have beendiagnosed with Fibromayalgia, IBS, Osteoarthitis,Ranaulds. Now I have just had My DLA Appeal Denyed. What a kick in the face? I was diagnosed with IBS, some 10 years ago. All the others were daignosed late last summer. so not long.

My Doctor and Rhumatologist have agreed that it is mild, Fibro and Osteo, Osteo is in my hands and Feet , of all places! I am treated , with a nice little Cocktail of pills. Atenolol, Bloodpressure(High). Quinoric (Hydroxychloroquine). For the Osteo. Ferosamide, IBS. Lactulose. Tramadol s/r, Pain. Paracetamol, Pain. How can I get the Doctor , The Rhumatologist too agree! I am in lots of pain and it is killing me. But they wont have it! Can you help? I have been to social services , and have apliances around my (Private) Flat.

42 Replies

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  • Hi Suzy,

    Nice to meet you. I'm liking Fibro Babe!! :)

    Have you had a good look around the FibroAction website? It's really full of very interesting info.

    I was diagnosed with fibro and osteoarthritis, I've also got an underactive thyroid and IBS and RLS. We're not happy with just one ilness on here y'know!!

    It seems most people are refused DLA at the first try, a lot of people just keep appealing and trying again. I haven't because I know I'm nowhere near ill enough to get it.

    Sue x

  • I will be looking around Sue, I need all the help I can get, I had no Idea that this site was here. Glad I found it! Glad I now will have some lovely friends who are in the same Boat as me. I have no real friend's now, all gone! I needed some one who could understand me....Look's Like you lovely , wonderfull people . will now be my real friend's! I can not begin to tell you how happy I am to have found you! I am Crying as I write and this Is making my Screen go all blurry! ..So Sorry! xxx

  • Oh bless, don't cry, we're very nice :) lol

  • Every thing? Lot of paper needed then!

  • i have Fibro IBS and depression, had to appeal hun, the more letters you can get and proof of meds should help. i recieve DLA now and it was worth the fight.

    Welfare rights can help you fill the appeal form in.

    Wishing you luck! xxxxxxxx

    Sarah

  • Thank you Jules! Every thing was ok with the evidence, so we thought, but for one thing..I said that I could walk 100 yard's with frequent sit down's and a good deal of Pain. Between that and my doctors. The Dla refused me. :( xx

  • Yes , I just feel like a Fraud, I think on the QT< so do some of my family and friend's! especially now I have been refused! I am just so Angry , also cant stop crying. xx

  • Hello Sarah Blessed Be! Thank you for the encouragement!. I have been so depressed with all of this. I will apply again in 6 months time. Welfare Rights? who ? never knew about them! Lol!

    Suzy x

  • Hi suzy,

    Its lovely to meet you, not that you have fibro tho.

    Can you not appeal as they seem to turn everyone down at first. I have just had the dreaded forms through my letter box this morning.

    I applyed last year but got turned down and i wasnt strong enough to appeal back then.

    I thinkyou do need some help with the forms next time, with like cab or dial maybe?

    Good luck with it all, hugs, kel xxxx

  • Jazher, Hello too you! Very nice to meet you too, infact all of you! :) I will appeal in another 6 months, It will let the "Dust settle!" then I will re apply. You have had the forms..recently? I was turned down last Friday! My heart sank! I will get help for sure. I would not recommend any one to fill them in on their own . unless they completely know what they are writing down! Good luck too you! Kel

  • As for the DLA, you do not get awarded this just because you are ill, you have to prove that you are unable to do personal things for yourself and unable to walk very far without being in constant pain. so you have to prove you can bathe or shower yourself, can't make a meal for yourself from fresh produce and so it goes on and when PIP comes in it will be even harder to claim it.

    Sadly thats how it goes !!!!

  • Like

  • How do we go on then, Without DLA, Have I got to be Completely Infirm, On my Death bed.(.God forbid!) To claim even the Lower amount. ESA, is all I live on. It is sublimely Rediculous! xx

  • Some would say yes to that Suzy. You have to be on your deathbed!!! :(

    Read some of the comments on here, go to Blogs and Questions and read how bad some people here are.

    I've probably got fibro quite mildly and I still work, I didn't dare send in my DLA forms after reading how some poor people are here.

    Sue xx

  • I will go read now, I don't know what delight's Fibro Has for me? If this is mild I would hate To feel what Bad is! I am scared Truth be known. I admire you haveing this and working, How do you do it? Suzy xx

  • Best not read then Suzy if you don't know what delights fibro has for you lol. :(

    Don't be scared, we all manage somehow. We've got each other to sound off to as well. The website is great, loads of info.

    I'm not surre how I work to be honest but I have to.

    I'm a childminder! :)

    Sue xx

  • I had a support worker from age concern and she took me to Citizens Adv. where a lovley man helped me fill out the forms.

  • Age Concern? ..Oh! Of course! Thank you , My Mum goes there. I will never try to do them myself ,yet alone even think about it. The paper work is long winded and confusing. Thank you Siver52! Thank you too ALL of you here!!! Love & Huggles.xx

  • Is it 55 you have to be now siver to get help from Age Concern? x

  • LOL, you can worry, I'm the big 60 this year. Can't be right - can it! xx

  • I am nearly 54 , ?

  • Hi Suzy,its nice to meet another one,:) Susie that islol, spelt differently, i was diagnosed with fibro,a few months back, along with hypothyroidism, and like a lot of others without much help from my GP,hope to get to know you,

    sending love and hugs.xxx

  • Susie, Many Thank you's! It is noce to know that there is a support group on here, one that I wold love to join. and later on Voulenteer for. You have all made me warmly welcomed, I won't for get the kindness..Thank you! I have a Doctor pretty much the same, I am thinking of Finding a New one that will help! I would love to get to know you too! ALL of you lovely "Fibro Babes!". lol! :) xx

  • Hi Suzy there lots of good advice above all I can add is don't give up I was in a real state apply'd for DLA and was turned downs so went to the appeal and they were very unkind to me and of course I lost but on advice of a friend I try'd again 6 months later and was awarded it strait away that time, I fell over when I read the letter after the battle I'd had!!

    So keep trying I think it makes a dif when youv'e been i'll for a bit longer so just don't give up keep going and remember your not alone.

    Oh and welcome to this wonderful site it's a true life saver :o)

  • Thank you Jessy, It is a great site, so informative. With so many others suffering too. Some so much worse than I. It is heart rendering. But also so very supportive . Like a little Family! , I thank you all! xxxx

  • nice to meet you suzy, im nadine!

    this site has been a godsend to me and hope will be to you!

    take care and gentle hugs to you xx

  • Hello Nadine! Nice to meet you. I think that this is just wahat , I need. Not to feel so Isolated and having no one to cuddle up to when I am down. Also, were all "Fibro Babes!" with other Illnesses thrown into the Mix. I am sure you will all be just the Tonic. If I can possibly help, in some way . I will be pleased to return the Advice and The love & Support. God Bless you all!!! :) xxxxxxxxx

  • it is extra hard if you dont have a partner i must admit!! kids still need feeding etc and no one to ask for help x

  • Hi Suzy and welcome,

    Having fibro is hard going and it does seem so unfair that we are not believed even by family sometimes and that because we can do certain things we dont get help or DLA, my neighbours daughter lost her leg and at appeal for DLA she had to PROVE she had lost her leg WHAT isnt looking at her without a leg enough??!!

    Anyway welcome and know that you are not alone we are all here for each other

    Take care

    Soft hugs

    Penny xx

  • Thank you Penny, I have had some really good advice from you all.. Many Thank you's ! it is so pathetic that we have to prove such a lot of things, we can not do! It is harder when you dont quite know the words, or how well your getting accross. because you have never been in this mess befor. xx

  • Hi Suzy

    Nice to meet you! I am Kia. I have Fibro, Ibs, TMJD, and chronic fatigue and i cant even go out the door to the doc(15mins walk away) without taking a cocktail of my strongest painkillers, I too got turned down from DLA and I wrote a letter appeling it as my doc never writes down everything i tell her so it didnt look that bad on paper, but i said they had no idea what my pain levels were or how bad fibro can leave people, i got them to reverse the decision. Admittedly i only get low rate and nothing to do with how little i can walk, i get low rate care cos my memory is so bad and the shakes i cant cook a hot meal for myself without burning it or me, and low rate mobility cos i get severe anxiety attacks in strange places.

    So it is worth appealing, like you i live on low rate esa only. But just answer each question based on your worse days.

    I hope you get some satisfaction and hopefully some relief occasionally from pain.

    hugs

    kia x

  • Thank you Jules! That was very well written. I do not cook at home. I live alone, so I have the pre cooked Micro Meals weight watchers..I stopped My arms have Muscle spasms as do my Leg's from time to time. I am a little worried about Burning myself. some of what you had wrote, I could relate to. It is swings & roundabout's! Thank you! xxx

  • hi well welcome to start with and i am so sorry to hear your plight i reall dont know what to say to be honest only that could you not change your doctor / i am opposite my dovctor told me to apply so funny how we all got same / all doctors do the same training yet they dont all agree with us wh o have fibro i thought they were the one person we should have to back us up didnt you i suppose you could contact cab or dial and see what they say others wh o have bit more experience on here with that may be able to help you more i hope so love to you diddlle x

  • Well Other than getting tearfull, and Cross. I am at a loss! I just think a week or so R&R Just might be the answer Psycologicly. but I just don't understand their reasoning? I just want to find a deep hole at the moment!

  • Thank you Kia! Hello too you.

  • Hi Suzy, I understand your depression as I suffer with it myself & it can be hard to keep focused & fighting with 'the benefits/welfare' service ...You feel as though no one listens & you just don't know where to turn.

    It helped me when I read all I could about my individual health problems & asked lots of questions with the consultants I saw & this did help with describing what was the matter with me & how I felt. Also I visited the Dr with every little thing so it was all written down

    CAB & Dial were both really good with advice & CAB filled in the forms & I was awarded it.

    This was while ago but I guess I will get a letter to be re-assessed soon & have to battle again :-(

    Don't give up Suzy, I read somewhere that for every person they fail they get £80 ... don't give up love, we are all behind you.

    Big soft hugs

    Chris

  • I hear you, ...well! ..Sort of! So they can fail us on whim? I do feel Depressed indeed I do. I am trying to collate some Kind od sense about all of my symptoms , I have to write it all down, My Brain has been throught the blender! . tas Fibro Fog|! Love and great thank you's! xxxx

  • Hi all....Im a total newbie as of now too and also just had my DLA returned and thrown back.....the charity who helped me fill it in A4U are helpingme do appeal but dont hold out much hope ...they have thrown it out on every single question and havnt even listened when I say I am blighted by such dizzyness it is with me 24/7 and been seing specialist for quite some years with it cant go out without my husband to link onto in case I fall but they say I only need him for comfort not because I might fall !!!! its ridiculous...........I have fybromyalgia, Chronic Fatigue, IBS, dizzyness, TMJ, tinnitus, depression etc etc etc the list goes on I sound like a walking health manual......I think you have to be virtually bed-bound or without a limb or blind or deaf to get any help these days......Im going for a good soak now after painful day but will take some time tomorrow to find my way around the site which does seem good and a god send to me ....x x

  • Oh meant to ask ... flicking thro the statements above I notice the words CAB and DIAL who is dial please ?? havnt heard of them and do they help at all....many thanks

  • Citizens Advice Bureux yes they will help with a number of Issues that you might have, like filling in DLA forms and Such like, One of the others on this sight might know who DIAL are, Like you , I am new and unfamilliar with this organization. Good uck! and helo too! xx

  • You all should specify which country you live in. I know none of this is for Canadians, for instance. If there is documentation and/or help for applying for Canadian disability, ODSP (in Ontario) or Canadian Pension Plan disability, I'm all ears!

    I've just finished my ODSP application and am half way through the CPP one. I had intended to apply at the same time.

    In Canada, it is a given that we get refused/denied the first time. At least that's the general consensus of the ladies I've spoken to about it.

    As for doctors saying "no" etc, get a different doctor. It's important that all of your doctors are on board and have a consensus of diagnosis!

    Personally, were I denied the first time, I'd hop right back at another application and get it in asap. Unless there was a time period of waiting.

  • I can not apply for another 6 months. xx

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