Fuming :(

My daughter just called me to say that I've received a letter saying I've not been granted any DLA neither the care or mobility level :( they haven't even seen me :( how can they say I don't qualify? They wrote to my consultant who believes fibro is temporary and can be healed if the person wants it enough but didn't see me or write to my GP.

I will have to have a read later to see if I can appeal. I can hardly walk, I have to pay a cleaner & some days things are so bad my hubbie has to get me dressed and showered.

26 Replies

  • Yes - of course fibro is temporary!

    I've only had it for fifteen years, and every day I know it'll be better tomorrow if I want it enough. I obviously don't want to get better, and it's clear that I enjoy the constant pain and not being able to do the things I wish.

    I'm not making enough of an effort - must try harder!

    Which planet does your consultant live on?

    SuzyB, you need to complain very, very loudly indeed - I am speechless at the effrontery of these people!

    I'm sure you will appeal - i wish you every success!

    Moffy x

  • :) Good retort, Moffy! I agree completely - what kind of sick, damaged individual wouldn't want rid of this pain enough to get rid of it, if that was all it took? The consultant needs a week in one of our bodies - that should sort the b***er out!

    Good luck, SuzyB xx

  • It just seems so unfair. My consultant sees me once every 6 mths for 5-10 mins and is only interested in my blood test results not how it impacts my life. Why should his word be gospel. I don't think they even wrote to my GP.

  • Hello Suzy B, you need to get your GP to refer you to a Pain Consultant at the Pain Clinic this os where I go these doctors believe in you and will even help you with pain relief to get youi through the day like mind did. I hope you will appeal and don't fill the form out yourself as there are trick questions amongst them get help from the C.A.B. Good Luck. X

  • I've got my pain clinic assessment on 15th March thanks

  • That's great news I hope all goes well for you and you get a nice doctor like I have she is so understanding and believes in me. Good luck and Please let me know how you get on.x

  • Yeah I will thank you. How much of a difference did the pain clinic work for you? I've heard everything from miracle cures and no more pain through to being able to cope with the pain and learning to live with it

  • I get low care dla but not for my fibro they conveniently ignore that and just give it for my arthritis.. I have never been seen but I tick the boxes that say get in touch with my GP orthotics dept , pain injection clinic and physio ... Whether they have ever done so I have no idea.. Plus I always add in the meds I SHOULD be on but can't tolerate and the list what I am taking instead.. Am just filling in my renewal now .. Takes me a couple of weeks as I have so much to put..

    As Moffy says appeal appeal appeal


  • Cheers I will look at the letter tonight when I get home and may go to the citizens advice bureau on Friday

  • HI Suzy B,

    When I put my first application for DLA in, it was refused, and so I had to appeal. I found a great guy who has helped me so much. He works for Employment & Welfare rights. Do you have something similar where you live? CAB are good too. The guy I went to filled out my forms and appeals for me and explained how these things work as he used to work for the government in the DLA offices. It disgusts me really. Basically we fill out a DLA form with all of our precious information on it, meds doctors ect. Then the DLA receive it and a person looks at the form and basically says yes or no! That's how it works! They only really take you seriously if you appeal. Half the time they think that you won't bother appealing. It's a crazy world we live in. That solitary person is playing with our lives. They don't understand what we feel and think. After submitting the appeal, I had my consult with the specialist and had my meds changed, so surprise surprise I had to submit a brand new form. Aaarrggghhhh. So my man that helps me out filled out my form again, including what the specialist said, meds and reports from doctors and all that. After sending that one I went to the appeal for my original form. That was scary but the guy that filled out my forms came with me and I won! I received middle rate dla and higher rate care. Then not long after that the second form I submitted came back with full care and mobility. I hate the way that the DLA works. It's taken me two years all in all to fight and win. Before my illness I worked full time and never gave a thought to the DLA, I'm sorry that I found out really. All of those people that have lied in the past about being ill, have made things truly difficult for us.

    All I can say is get in touch with CAB or someone similar to employment & welfare and FIGHT! FIGHT, FIGHT, FIGHT! It's not easy and its hard and tiring, but our illness requires us to live life very differently to how we used to and we need care and understanding. I don't know how someone could pretend to be disabled, I really don't. You couldn't make up what we're feeling. Make sure you get any notes together from doctors that you've seen and a list of all your meds. It helps if your GP is nice and understanding. I wish you all the best of luck with this. We have to stay strong and fight for what we need, All the best, Kimberley xxxxx

  • don't forget the benefit & woks guides from admin.


  • Where do I get the work and benefits guide?

  • benefitsandwork.co.uk

    I hope this works

    VG x

  • Yeah link worked thanks VG

  • Stop! you can get them from the admin team free.

  • How?

  • Email info@fibroaction.org

    Subject benefits

    Hoping that's right now :)

    VG x

  • info@fibroaction.org

  • Yes, it is true, FMS is only temporary. I can tell you that in all honesty after having it 26 years and counting, and yes I do want it badly gone because it is making my life hell. FMS is caused by a chemical imbalance in the brain. It cannot be cured. WHY? Because non one actually knows what the imbalnce is. You cannot treat something if you do not know what the level of imbalance is. Hopefully one day they will come up with an answer.

    I would strongly advise you appeal the decision and send off any printed medical info you can find with the appeal. My GP printed the info off for me whilst I was there when I joined his practice about 10 years ago. I never really understood it before then. My previous GP was no help in the matter. I also remember when I was first diagnosed my rheumy said to me 'it is Fibromyalgia and you are stuck with it'. Your rheumy needs to go back to whatever books he learnt from and re-read it quick smart before he destroys anyone else life.

    My FMS is chronic, I am never free from pain 24/7 and manage only about 4 hours sleep, badly disturbed each night. My GP says I am an amazing woman for the way I cope. I told him it is down to the rheumy being straight with me. I just have to get on with it.

    They will be banking on you losing all hope and not appealing, so you appeal and hit them where it hurts xxxxx

  • Wishing You the very Best SuzyB!

    You deserve to be on benefits and to be taken care of.

    This illness changes the way we have to Live... in all area's.

    Looking forward to hearing Great news of your Win! xoxox

  • He sounds like he needs to have about of it for a while lol. He's obviousley not educated in fibro, is he an older consultant.?? I research alot and i read that docs who qualified from pre - 1990 ish dont have much knowledge on fibromyalgia, the younger docs tend to be more educated and better informed about fibro. Dont let this put you off appealing, and if you have to appeal again. If you have an organisation like DIAL, they are very good at filling out forms and putting the right info down. Ive worked for NHS and i was once told that when you put too much info on the form they cant be botherd to read it all and just fob you off. Make your points factual and condensed.

    They dont have the time or patience to read about how you have to get someone t put your slippers and dressing gown on so you can crawl to the bathroom in the middle of the night and it takes you 5 mins to get there. "All they need to know is you need support to use toilet facilities at nigh and during the day." Im not being deragotory to you. Just repeating what i was told from a gp who carried out these assesments for DLA.

    Be persistant, get as much info from the doc that sees you the most... If you can get their support its much more helpful.

    Good luck xx

  • Hi everyone,

    I really do despair with these doctors and GPs. Why would we tell them that for the majority of the day and night we are in constant unbearable pain and cannot do anything. I can't sit for long or sdtand up for long, im in pain everywhere. Why on earth would we be going to see them if we did'nt have any symptoms? Do they think we enjoy being in pain? I was also refused DLA, my GP did'nt help me at all. That's what i have paid over 40 years national insurance for, we also pay their huge salaries - have any of them ever had to make do or go without anything - i don't think so.................

    My best wishes to you all.


  • I wish you all the luck you deserve - all of this reading makes me so very grateful for my wonderful gp - who seems to have a really good understanding of my condition and is very supportinve in every way. Thank goodness - I really do hope you have the strength to fight for what is rightfully yours X

  • Hiya

    I was diagnosed about 3 weeks ago,im so ill i cant even begin to tell you.

    I have been refused DLA 3 times,the last claim i sent in on 29th January & i got a decision 2 days ago. Too quick & no info off my GP was sought.They based the decision on an ATOS medical i had 8 months ago! I too was fuming,i challenge any one of these so called decision makers to live my life even for one day!!

    I totally empathise with you,my house used to be spotless 24/7. it is slowly but surely showing signs of neglect,i can not afford a cleaner, my children are also victims of neglect,simply because i am far too tired to give them any of my time.

  • I'm sure every one of us on here wishes fibro was temporary, but sadly we're stuck with it whether we like it or not! I've probably had it all my life though I wasn't diagnosed until 1994... and yes, I still have it now - sigh.

  • I went to the citizens advice bureau today and they said that as I filled my initial forms as a good day it makes more sense to re-apply. They were really helpful and said they would send someone out to my home to go through all the forms to save me travelling to them again.

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