refused disability !!!: soon a s i got... - Fibromyalgia Acti...

Fibromyalgia Action UK
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refused disability !!!


soon a s i got the letter this morning i rang them and stated iam appealing , we go through enough stress everyday without this ,i would love to see them go through what we all do everyday , they have no idea , they would realise what it is like for us , we shouldnt have to fight for this , but i certainly will do , my love to all xxx

11 Replies

I get dla lowest care rate and only because I have arthritis they ignore my fibro completely,

Good luck with your appeal

VG x


Dear Broadband,

I am sorry you are experiencing so much stress trying to claim benefits and we understand, as we have all been in these kind of situations at some point.

I would like to mention that FibroAction can provide Benefits & Work Guides on DLA for free . If you haven't already done so you can email : and they will email them to you.

Website :

Also can I post a link to the FibroAction Website regarding benefits that may be of help too.

I hope this helps

Best Wishes


ty for your replys , it means alot , mdaisy ty for the information , i appreciate it xxxxx

MdaisyAdministrator in reply to broadband

No worries , pleasure

I appealed and ended up having to go to tribunal. It stated on the final letter with appointment date that I had to get in all final paperwork in 14 days before the tribunal date. I did this and sent it registered post to ensure they got it.

When they arrived I was told it had only been faxed the night before so they couldn't take it into account, I was devastated. They said that I could postpone but ploughed ahead.

The tribunal was an ordeal and doctor was horrible, telling me people with fibro get better. I challenged him. My colleague and I, who came with me challenged this.

The judge and other person on the panel was really good and I completely broke down about the effect on mine and my daughters life. Luckily by the end the judge said they would try to read my other information but that they can only look at the time I applied and not later even though my condition had deteriorated further.

They awarded me low rate care but as my condition had clearly changed to apply for a suppression. I did this expecting that it wouldn't take long but that was August and we are still chasing it.

I hope yours doesn't have to go as far as tribunal but if it does make sure you get any paperwork in at least 3 weeks before and make sure you take someone with you for support. I had a colleague and my mum.

Good luck.

I am on it now and I was awarded it for the fibro, and then renewed as indefinite once I told them I had osteoarthritis of the spine xxxxx

My Esa was stopped as only awarded 6 points for mobility as I have long standing back pain from a car accident 6 years ago, and arthritis in my shoulders. I was awarded nothing for my fibro. I was awarded nothing from DLA, my doctor was not supportive. I changed doctors, he totally understands fibro and told me to appeal. I went to the tribunal and was awarded lower rate care for fibro, mainly because of the IBS, but nothing awarded for mobility. Because of the constant pain in my back, legs and knees, walking any type of distance is really hard, and I stumble quite a bit, although have not actually fallen. I try to push myself through it, but after 5 minutes or so I am in tears. The whole process of claiming these benefits and appealing is so stressful and adds to your illness. But I knew I would never be able to function in an office environment again, and to be honest I didn't want to. I am extremely noise sensitive, fluctuate between hot and cold, constantly, have severe fatigue, blinding headaches, burning and aching pains in my legs, hands, neck, shoulders, in fact nearly my entire body.

So I have started working from home, and select opportunities that I can fit around my illness, instead of trying to fit my illness around the jobs. I work on a freelance self employed basis and currently have 4 long standing clients. This has worked well for me as it means I do not have to rely on benefits. When I am having an episode,as I call them, I can stop and take a break or sleep for a few hours. If I cannot sleep during the night, I get up and work, so it suits me.

I have found having to work, much more difficult though, as it takes me so much longer to do certain tasks, as I find it really hard to concentrate for any length of time, I have to write everything down or print things off, as I just cannot seem to remember things correctly, and the tiredness is maddening. I have started work at my desk at 9am, and then woken up at 3pm, in bed with absolutely no memory of actually leaving the desk and getting into bed.

I found claiming benefits so stressful and depressing, it made my illness worse. The benefits systems seems to be designed to make you give up, even when you have genuine illnesses.

Good luck to all those who persevere.

hi , since hearing yesterday i had been refused i feel i have taken a massive step backwards , i feel depressed and tearful , which your right triggers more hurt , i will have to find my strenghth again , i have been looking to do some work at home because i didnt want to go down this road , i cannot go back to work as i was a nursery nurse with 26 preschoolers , ty for your replys x big hugs x angie

the benefits and work guides are excellent. they have physical as well as mental disabilities. working out how to describe your difficulties is the problem. does your gprs or rhemy understand how your fibro affect you? I lost some of my dla when I updated my needs and I tried appealing to no avail.


I hope the Benefits and Work Guides prove helpful to you Broadband, and I wish you all the very best for your appeal. We will try our best to help and support you through this.

Take care. (((hug))) xxx


ty xxx big hugs x

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