Has any one been successful with there disability claim as I have had to give up work due to fibro and its very difficult on one wage!

[poppy1]

Hi everyone, I have recently been diagnosed with fibro however I have suffered with unbearable back spasms for about 5 years, these usually last about a week and then I'm back to the normal fibro misery, not good especially with a family and deaf dalmatian, does anyone else get the back spasm so badly, with the rest of the symptoms?

[Rach1977]

Hi, I sure do and my whole body flintches. It sure is painful and not nice. If you get them really bad could you ask your GP or pain consultant if you are under one if you could have Botox in your back? I believe this really helps and my friend used to have it. Some PCT's won't fund it though, however some do. failing that a good few tablets of Diazepam helps!!!!

Oh in answer to your question I have not claimed disability allowances as i am still employed and being paid, however I am in the process of being pensioned out. Fingers crossed I do. I will get a monthly pension wage, however massively less than my salary right now and I worry about it every day as money. I told my hisband he needs to get prmoted fast to earn extra money. It would also help if he didn't have to pay such a massive lump oof child maintenance too!!!!

I am sorry to hear you are financially struggling!!

Good luck xx

[FionaP in reply to Rach1977]

Hi Rach. You do not need to be out of work to get DLA. It can help you in keeping your job. Do apply, especially if you are struggling as it can make a great difference to your quality of life. Bills, potions, lotions, taxi cabs. The list is endless. Mine pays my energy bills, which are huge and pays toward me getting an assistant. Best wishes. Fi

[poppy1 in reply to Rach1977]

Ouch! I know, I think the money side of it hinders the whole situation, but perhaps you may be entitled to extra top ups if you're suffering. It's hard enough paying for your own kids without the others too! I've got one in uni and the other in a hairdressing apprenticeship, but we just about manage.

I couldn't have managed without my lovely daughter last week though... 2 doctors called, diclofenac injection, diazepam, amitriptyline increase and back still agony, but don't you hate moaners, I'm used to being so active, drives me crazy. Anyway thanks for your support and hope all comes together for you, good luck you deserve it xx

[pottyness]

i found that as long as i didnt mention FM as my main disibility i got mine eventually. FM on its own is an umbrella term for different symptoms for different people.[great help that was ] so you have to put down the back spasms and how far you can walk on your worse day and if you can make you tea on your worse days. personally when my back goes i can bearly walk accross the floor and cant lift my feet off the floor at all and i would starve to death and only drink if i did so on my rare trips to the loo. [which is another story] so after the back,

i am sure as you suffer from FM, you have to start mentioning the individual syptoms such as fatigue and burning in the muscles and spasms in the muscles and chest pains and migraines and IBS etc etc they differ for each FM patient and my list went to the bottom of the page then up the margin. then i briefly mentioned that all these problems were caused by my having fibromyalgia. dont understand why FM on its own isnt good enough for them but i do know of some sufferers who actually manage to work with it for a good few years so it means that as far as they are concerned we all should.

good luck

[poppy1 in reply to pottyness]

Thanks for the advice, I've filled in my application and sent it off special delivery with every letter, scan and blood test I could find. Hopefully by putting the back problem as the main disability I have helped myself, but you never know. I think working in a play school was probably not the best solution either and the fibro crept up on me, but like you if I could work, I would, not be sitting here and complaining, ouch got to move, back stiff, good luck to you too

[FionaP]

Hi Pottyness is right. Please put fibro last on your list after all other symptoms. And remember that if something you do causes pain immediately or later then you need to say you cannot do it without help. They fail to understand the cause and effect of fibro. I just got mine this time though had to appeal in 2008. Learned a lot since then. Best of luck. Fi

[poppy1]

Hi, thanks that sounds really encouraging, I think I have sent them enough to prove my point, the back thing is worse than child birth but some bureaucrats are quite hard and I suppose they feel that they have to keep to their allocated budget. I'm so pleased you were successful though in the end, would much prefer to work and be pain free but I suppose will just have to make the best of it x

[mumof4]

I Got refused dla a few wks bak i know sum1 else with fibro and they got refused aswell but try u neva no u mite get lucky and and qualify

[poppy1 in reply to mumof4]

I think you can appeal within 21 days so don't accept the first decision, try, try and try again, letters from family and friends are my next option if I'm refused as they are the best judges, good luck!

[Kirby]

Don't forget that DLA is to be replaced by PIP from 2013 and will be harder to get. If you can, take part in the consultation before April 30th. There have been some wonderful people who have put together easy-to-understand forms at the following link. wearespartacus.org.uk/

[poppy1 in reply to Kirby]

Thanks for important info, didn't know that will look at your link

Take care

[Kirby in reply to poppy1]

You're welcome, Poppy

[Hidden]

I cant get any benfits weve tried, now we live off our life saving and isurance policies, plus what little my hubby earns , self employed as hes my carer, so we re living well below the povety line

[poppy1]

Sorry to hear that, I know how you feel, maybe worth another try now, you can fill in application online, so nothing to lose. Good luck x

[Ebony]

when I claimed DLA I put my main condition as Fibromyaglia Syndrome and through the questions explained how it affected me, I was awarded it the first time I applied, that was in 2004 and have got it again each time I have had to re-apply. I think alot of it is how you word your reply. Not being awarded DLA is nothing to do with having DLA I'm sure !!

[poppy1]

That's encouraging, I think maybe different health areas treat applications according to their budget, understanding and general recognition of the condition, however articulately and honestly the forms are completed. Your area must be well educated and fair in dealing with applicants with fibromyalgia syndrome, I'll let you know about mine, even though my G.P has been very sympathetic so far. My main problem though is how it affects my back, which makes it impossible to attend the fibromyalgia hydrotherapy sessions granted. Two sessions and back in spasm again, so I think each case should be looked at individually, as symptoms vary immensely between sufferers. Fingers crossed x

[Hidden]

I had help from CAB to fill in the form it took 13months to come to tribunal, were it was dismissed out of hand

[Katybird]

Yes I got mid-level DLA and high-level motability but they turned me down first time and at appeal.

The 2nd time I went through a charity (in Yellow Pages) which speciallied in DLA applications - they told me how to fill in the form, what to say, what NOT to say, and I got it for 3 years.

It allows you to work if you can as it's not income or savings related.

Good luck!

[Kimm]

I have osteo arthritis as well as fibro, i do get DLA so i'm if you might say one of the "lucky ones", ask the person that diagnosed you to write a letter that you can forward to the DLA to support your application. I'm just applying for a Blue badge i don t hold out much hope of getting it. I wish more people in the benefits departments would recognise Fibro as a disability because it flamin well is very debilitating. I think it's awful that we suffer without any help especially the amount of medication we are put on, to get a little help to pay prescriptions would be helpful at least.

[Tiggerooo in reply to Kimm]

Hi Kimm, I'm a newbey to this site so wanted to say hello, and also regarding your question to do with prescription costs - I don't know your full situation obviously, but I am still of the understanding that if you are unable to work and in receipt of Income Support, you don't have to pay for your prescriptions. I would check with your local Benefits office in that regard.

Before I became unable to work at all, because of the huge amount of prescriptions I was on (and still on for a number of conditions) and then signed off work completely when diagnosed eventually with ME/CFS & FM-at that point then in receipt of Income Support, I think if I can remember that far back, lol, it is a case of "if you have a letter showing that you are on Income Support" then you show that to your local Pharmacy where you get your prescriptions; they take a note of it, and there is a box on the back of the prescript to tick saying you are in receipt of Income Support, which gives you your prescriptions free of charge. I presume the rules on that are still the same, but as I say your best way forward is to check with your local Benefits Office. Are you familiar of a great site that has loads info (even more available to you if a member) whose URL is: benefitsandwork.co.uk ? Its a great help with DLA, etc. Good Luck, Take Care of you, and sending caring hugs to you X

[Gracie59]

Kimm - you get the higher rate mobility component of DLA? That should automatically qualify you for a blue badge. If not, ask your GP to support your application. I was on the lower rate (mobility and care) for 3 years, then I was assessed by social services to be registered disabled. With the help of my GP, I was awarded my blue badge. I then applied for a rise in DLA, saying my condition had worsened, especially with osteoarthritis of the knees

I sent copies of my blue badge and and evidence of being registered disabled. This led to me being awarded the higher rate of the mobility component, which meant that I now qualified for a Motability car. That really has been a Godsend and I am terrified that I might lose it under PIP. It is my passport to the outside world. Good luck Kimm, I really hope you get your blue badge.

[Tiggerooo]

Hi Poppy1, I can certainly relate to you-the Fibromyalgia is very painful and tends to inflict the whole body. Over all the years since I was signed off not fit to work anymore in 2005, they reckoned I had had it for 2 years before that going by the ongoing symptoms. I had to fight every year to keep my originally fought for DLA, and last year, now with 5 chronic illnesses, the DLA, for the first time sent a letter advising me "that my claim is to stand 'indefinitely'" obviously unless my health changes to affect the current payments. One thing I advise very much so, and it was the thing that helped me word my DLA application form the last time, correctly and got my positive results; and is a very helpful site indeed, with advice, help and lots of terrific info on there.

The site is: benefitsandwork.co.uk (do have a look at it)

Honestly they are FAB and it helps those eligible to it to fill each part of the form from beginning to end-takes a lot of pressure off as you will probably know the ME/Fibromyalgia doesnt exactly help us with finding the right words for these things, and the forms are so long-its great to have the site there with all the information needed, question by question. There is a small membership fee so you get into all the important parts of the info that a non-member wont get. Do give that a try-I cant thank the site enough for the pressure and help they took off me. Its hard enough making claims because some are not well enough to work, but those unable to work, due to the illness also cannot find the right words need to answer important questions bringing stress and anxiety to the already difficult situation.

Hope this finds you feeling a little brighter. Do give the site a try as I don't think you will be disappointed - they help a lot of people with their site, regarding claiming and how to put forward the best application, which is to the point and why you are claiming-always fill these forms in as if it was your 'worst' day, as its such a variable illness-the site advises that too.

Do let me know what you think. I hope you are feeling a bit brighter and can get a decent sleep. Hugs from me XX

All the best to you Poppy.

p.s. This site for Fibro sufferers is great so we can have our own supportive group through each other, and I look forward to hopefully getting to know yourself and others.

[poppy1]

Thanks Tigerooo, for taking the time to answer my question, I will have a look at the site you mentioned, it sounds really informative. It's so much easier when someone understands the ups and downs from experience and I'm glad you had a good result in the end. I have received one letter back saying they are contacting my doctor for information but we'll see what happens.

Thanks for the support and hugs from me too xx