Hi everyone cant bileve it I have just had a appeal for dla and they refused me. How can they do this to someone who finds it hard to walk.

[Alison1985]

I even find it hard to walk 10 steps let alone do anything else I cant even get into my bath and its been like that for neally 3 years

[Fibrofoggiest]

Hi Zoe, I'm so sorry about this, but I'm afraid it is pretty much par for the course with ATOS - it is well documented how inept they are, if you can wiggle your little finger just a bit, then miracle of miracles your are considers fit to work haha !!!!!!

Hang in there and reapply, these dreadful people employed to get a many people off ESA as they can, it's all number shuffling and not taking into account the suffering of the people who are in these situations, like we all want to suffer like we do.......not !!!

Sending positive vibes your way

Foggy x

[hamble99b]

have you put in an appeal?

email fibroaction.org and ask emma for the benefits & work guides.

[Alison1985]

I have put in an appeal that was yesterday but right now I just dont know what to do any more I feel like giving up all I wanted is some help but I dont even get that

[hamble99b]

don't give up. the benefit & work guides and the c.a.b. helped me.

[Alison1985]

Well I am slowly giving up but I am going down c.a.b today to see what they can do for me. Thanks Sandra its nice to no people care.

[haribo36]

Hi there,so sorry to hear that you were turned down.I get the high rate care and mobility but originally I was turned down too.You need help from either cab or an organisation called DIAL.Iam not sure if it is available in all areas of the country though.I had cab come to my house and fill the form out for me which was a success.I went from being turned down to getting low rate then high rate for both.However,social services did advise me to appeal as my condition worsened and I need help with looking after my kids and day to day things.It was them that contacted the cab for me and arranged for them to come to my house.Plese don't give up as it certainly sounds like you are entitled to it and you should fight for it.I hope all goes o.k with the cab today.Ask them if they can fill the form out for you xx

[Alison1985]

Thank you but I feel so alone right now just dont know what to do anymore.

[Alison1985]

I will give dial a call they are in my area thank you x

[shushkin]

So sorry to hear of your predicament. I am in a similar situation. I am sure CAB will do their best to get the right result. Hang in there. I know its easy to say but dont let the ATOS beggars get you down.

[Alison1985]

Cab are going to see what they can do for me but im so worried I not even sleeping now

[hamlet in reply to Alison1985]

Hi Zoe, did you keep a copy of your application. It would help the CAB tremendously.

[Deb1701]

The same thing happened to me, even after a doctor had been out and examined me at home. I had sat in tears of embarrassment and annoyance as I told him that if I can't get up fast enough nor walk to toilet quick enough I would end up passing urine like a child being nappy trained. Imagine my disgust when I was told I didn't qualify. I rang the dla office and was told they would put into another decision maker first, if that failed then I was to appeal it. I was told it would be as long as 8 weeks. Enforce I heard something. 1 week later I got the decision which had been reversed and also increased. I now get middle rate care and full rate motability.

DONT GIVE UP KEEP UP THE FIGHT

good luck

Debs

[Alison1985]

I did keep a copy thank god and I wont give up the fight thank you for the support xx

[Allergill]

I am waiting for my appeal date, and I am really worried and upset by it all. I was first diagnosed in 1992 (ish) and the symptoms first appeared after a hysterectomy in 1990, then after a bad car accident in 1992. Bad whiplash and back injury. Three more accidents over the years, all hit from behind whilst stationary and once as a passenger. I managed to work full-time up to 2003, then 3 days a week up to March 2012. My FMS has got so much worse this last 3-4 years. I have also got cervical spine stenosis which has meant some of the nerve roots from my spine are 'impinged' causing weakness, pins and needles and numbness in my hands and my left lower leg and foot. The only did the MRI of the neck but I have been told I have likely got it all down my spine. .On top of this I am very depressed, lots of issues but came to a crisis last summer when I finally managed to get my chronic alcoholic husband out of my house. He lost his business and his house a couple of years before when he declared himself bankrupt! Fortunately my former home was still in my name and I had let it out when we married so they couldn't take that from us. I have bad anxiety attacks and full blown panic attacks if I feel trapped in a situation and can't get away. Could not contemplate public transport, feel sick to my stomach even thinking about it. Hardly leave the house, my CPN visits me at home and she takes me to my psychiatrist and psychologist appointments. Nevertheless, I was turned down for DLA in June and I have appealed. Dreading it, especially with my anxiety and depression, I just can't function some days. Any advice on how to prepare for the appeal? My CPN contacted CAB for me, after a telephone call back I have been referred to the local council Benefits Advisory Team - but not been given a date yet just it will be November or December. I am really panicking reading that you have been turned down at appeal - it is making me even more depressed and I have already had crisis team intervention twice when life just got too hard to cope with. Hoping for some positive words. Thank you for listening. xx

[Mdaisy in reply to Allergill]

Hello Allergill,

I am so sorry you feel the way you do at the moment and it seems this added stress is impacting on your physical & mental health. Firstly you are not alone in your experiences of low mood/depression as I think we can all honestly say we have felt down at some point due to Fibro. You will find that all the members in this community will always listen and try to offer any empathy, understanding and support as best we can. You may need to go to the GP or CPN to discuss your feelings as they may be able to suggest options to get you through this acute phase. You can also pick up the telephone at any time 24/7 to speak to the Samaritans and there is also a charity called Family Lives that can be contacted for support too, links & information below.

samaritans.org/how-we-can-h...

familylives.org.uk/how-we-c...

If you ever feel really distressed you should call NHS Direct on 111 for advice as they may like you to go to the local A&E so you can be assessed by a medical professional.

Regarding your appeal we at FibroAction can send you the Benefits & Work guide for free relating to DLA, Appeals etc. I would be happy to send them out to you as I feel this may help you to feel a little easier & less stressed about the appeal which I sincerely hope will provide some comfort during these times of anxiety. Please try to be strong and we are here if you need to verbalise your feelings to a community who support each other as much as possible.

Here is the email for the guides [e-mail]

I hope to hear from you soon

Take Care

Emma

[Allergill in reply to Mdaisy]

Hi Emma, thank you for your reply. Its good to know the support you offer. My CPN visits me at home every two weeks and she takes me to Psychiatrist and Psychologist appointments. I just feel I have struggled physically for far too long. I was the main breadwinner and this put a lot of extra stress on me. When my work began to suffer instead of understanding at work I was put under even more pressure and felt bullied towards the end. I was off sick after an unrelated operation last March and just could not go back. Being at home all the time led me to finally break up with my husband, I should have done it years ago, but it all just adds up. I have had problems with depression for years. This is what the psychologist is trying to help me through. I have the local mental health crisis team and Samaritans on quick dial - and have needed to use both of them at different times. I would not be here if not for them, they are brilliant when you need them. My CPN is also a star - but she knows nothing of about Fibromyalgia which has been sidelined because of the depression.

I do have anxiety and prefer not to leave the house - nothing to do with the Fibromyalgia so that hasn't caused the depression, apart from the pain giving me another excuse not to go out! It will be an issue for the appeal - though I will just double up my Diazepam and my daughter is going to go with me.

My GP is good, she is reasonably aware and up-to-date with Fibromyalgia but the depression has been the biggest worry this past 18 months. Trying to get everything sorted and down on paper for the submission is just a nightmare as I am not always sure which health problem is causing which symptoms. I am going to do symptoms and how they affect my daily living then a tick box at the side to say which condition I think is causing it! As far as I can see it is supposed to be the symptoms how they affect your daily living , not the diagnosis or name they give to it.

Many thanks for your reply again, I really appreciated it.

[Alison1985]

Allergill I have all the same simtoms only difference is I was run over by a white van man, the doctors said I will never walk again but 3 years down the line im walking but very slowly as its so painful.

[Alison1985]

In my appeal I felt so embarrassed I was a nervous reck but all I can say is be truthful I know thats easier said than done because you have seen whats happened to me but thats all I can really say. Sending you hugs and thinking of you.

[Mdaisy]

Hello Zoeann26,

As Sandra our volunteer has mentioned, please do email me at [e-mail] for the free Benefits & Work guides which may help. Here is a link to the FibroAction website regarding benefits too

fibroaction.org/Pages/Benef...

The Benefits & Work guides cover the whole process and may help you to feel less stressed which seems to be exacerbating your symptoms of Fibro. Some areas have Advocacy Alliance branches usually from MIND (the charity) who have volunteers who can help you to complete the forms (please see link below) or as people have mentioned consider contacting your local CAB for advice/help too.

healthunlocked.com/fibroact...

I hope this helps

Emma

[Alison1985]

I have contacted cab they are sending someone out monday or tuesday to see me as I tried to get out but my lifts are not working and I went tumbering down the stairs I know not good and im in more pain now, I really feel like crying now.but I will e mail you thank you

[Alison1985]

I don't think there are enough hours in the day with everything I have going on in my life to do that and I'm not trying to be funny at all

[Hidden]

Hi zoeann & Allergill

Sadly all I can do I offer you my love and say I truly do know how you are both feeling. My children's father and my partner and husband of 28 years died very suddenly after being diagnosed with cancer. I've been left penniless and nearly homeless with 2 children and no partner.

The stress all of that has had on my Fibromyalgia has been so damaging I can't tell you. My pain is now constant and I can't walk on waking in the mornings - not that I get any real sleep.

There's been lots of other issues too. All I'm trying to say is I wouldn't wish a panic attack on my worst enemy.

My depression has plummeted and at 52 I feel like I'm on the scrap heap.

We all have our own journey's and stories, but none is worst than the other.

At the end of the day we are all suffering immeasurably.

My thoughts are with you both. I just wish there was more I could do to help you both.

Hugs

Coz xx

[Ginsing]

Sorry my last message was awful it should say if I can help in any way just let me know I am here for you. I am having a bad day too but always able to offer a hug

Xxx gins

[Alison1985 in reply to Ginsing]

I'm always on my own so thank you that means a lot coz my family just don't care

[Alison1985]

Coz1 I really know how you feel I'm lucky if I get an hour sleep at night and when im awake I have trouble getting out of bed sometimes my neighbour has to come and help me coz I've tried getting of bed and falling flat on my back and believe me it really hurts. Sending hugs your way xx

[Hidden]

Hi zoeann

My personal opinion is that I think if we were all able to get good "proper" sleep we would be able to cope so much better with everything else going on in our lives.

A friend of mine once asked me to describe depression to her and what it feels like.

For me, depression, panic attacks, low self esteem ~ if you haven't ever had or suffered from them, there's no way anyone can understand what they're like or even have any idea how seriously badly they can affect your life.

If you ever want a chat I'm usually around.

Thinking of you

Hugs

Coz x

[Ginsing]

"Proper Sleep" Oh Coz I agree with you wouldn't it be marvelous. At best I get three hours and then I am so pleased with myself.

I loathe the day time naps I always feel I have missed out on something! You are quite right our coping strategies do improve.

So Zoe and Allergill there are lots of us about dont forget sometimes sharing our problem and thoughts is a real help.

Now it is another day so how are you today? I hope your spirit is lighter

xgins

[Alison1985]

Not very good today because I also suffer with sleep walking and well I got in my lift and went straight to the top off my 13 story block and just stood on the top near the edge.. Not good still shaking. Xx

[gadget]

I have just won an ESA appeal from 2010. Before I went to the first tribunal I gathered letters from family stating how I was - or rather not coping. I paid for an additional report from my GP that detailed my condition. The tribunal, however, even though they are supposed look at your case at the time of your application, they failed to take into account the new and up to date medical information which was given to them 7 days before the court date. The second tier court in 2013 (the appeal to the appeal judge) disallowed the first tribunals decision on the grounds that they should have paid more attention to the information in the letters rather than the date! This was a total shock to me - but if a second tier appeal judge feels that dates are unimportant - but the latest medical reports are - then there is a chance for people with fibromyalgia to succeed. Winning the ESA will hopefully give weight to DLA application.

Just a tip - when requesting a report from the GP - write down what you want included in the letter - they cannot lie - but you giving them direction of what you want explained / confirmed / detailed helps them.

Contacting your local MP seeking help may also give weight to your application. My GP would only give a report out if it were requested by a legal agency - MP's request goes a long way lol - not to mention a copy of the MP's letter describing your case in your appeal notes!!

I also had difficulties with ESA payments - with in 24 hours of contacting my MP - payments were fully reinstated with back pay - and the apologetic telephone call from the ESA officer her self.

It makes you wonder if they are set targets on how many people they have to disallow benefits to??? hypothetically that is.