Disability/PIP claim troubles

Posted , 9 users are following.

Hi everyone, 

I have had fibromyalgia for a few years but over the last few months I have had a particularly bad bout. I've been struggling more than ever with pain. I was referred to a rheumatologist who has since out me on lyrica (pregabalin) 600mg and start my physio tomorrow.

After talking to a few people, and because my fibro has worsened I decided to apply for disability. I am 26 years old but I feel like I am 96! I struggle with pain, muscle spasms and twitches, chronic fatigue,,,,the list goes on and on as I'm sure you are all very familiar. I explained all this in the interview and yesterday I received a letter saying I was not eligible. However, she has dismissed certain elements of my illness and has graded me 0 on sections which are affected on a daily basis. I clearly expressed in the meeting that my condition fluctuates daily and this wasn't taken into account and I believe they based their decision on how I was on the day even though I expressed it was a relatively good day, however as the interview went on dull pains worsened (particularly after being asked to move this, do that, etc) my thought processes get messed up as well and my memory and focus is really affected during my "fibro fog" again, this wasn't considered even though my mum helped me to remember/ answer certain questions. I also suffer with depression which has been worsened by being off for e past 3 months due to pain etc. I am seeing a counsellor and this helps but was not considered during the decision. 

Basically (sorry for rambling) I was wondering if other people had any advice, I have spoken to a couple people with fibromyalgia and they have said that they were refused once then when they disputed it / appealed they were accepted. 

Can an anyone offer any advice? 

3 likes, 8 replies

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8 Replies

  • Posted

    Hi Lion

    Sorry to hear that you not feeling too good at the moment.

    There are many people on this forum who will advise you on your PIP claim.

    Gente hugs wink x

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  • Posted

    Hi

    I would definitely appeal the decision. I believe you have a certain amount of time within which you need to do this so it would be a good idea to check that. 

    Also get some help from the CAB or Welfare Rights to help you file your Appeal. 

    If you think I can be of any help, let me know and I would be glad to. 

    Bluebell x

     

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  • Posted

    Hi Lion,

    The first mistake was stating your "condition fluctuates", -  these two words together in a DLA or PIP form is basically like putting "0" points on the form yourself. They are two keywords that are scanned for in your application.

    You need to know how to fill the application in using alternative words that mean the same in a different context, hence:

    appearance, resembles, "intermediate" <-- this word is not a well known keyword, so it is one i would use.

    an example

    i suffer from fibromyalgia, which has many intermediate disorders that i suffer from which include the following:

    then list how each one and roughly how often they affect you.

    fibromyalgia is classed as an 'invisible' pain by many people, yet you suffer daily from it, in one way or another. the problem is with filling in the actual pip application form, since 72 points come from the care side and just 24 points on the mobility side. now, you can see why it is difficult to get the mobility component on the high rate. some people with fibromyalgia do manage to get both on full rates., so it is possible.

    remember this application form is your key to obtaining the award, and in exceptional circumstances no face to face is needed. the chance of getting this far with no face to face is very slim.

    the dwp / atos have very little on fibromyalgia, in fact only two instances and it covers 5 pages, and most of that is back pain. their a-z of illnesses is 800 pages, so that is bad, when compared to the british medical journal at 17 pages on just fibromyalgia. that is how much they know, which is very little!

    never fill the pip application form in online - the chances of winning your award is very low. the reason for this is, you cannot add much content of your own, so you are very limited to how to describe pain, headaches, cramp, spasms, etc.

    with a normal form, the sky is the limit - but do not just rush it through, take a few days if you wish. the more information that is on this application the better. let's say for an example you got to question 6 with probably 6 alternative answers, do not just tick the box. add a note please read page 1 of my additional information - then on this page go right in to detail, how and why this is not possible, if you need help from a partner then put this down as well.

    you may end up with more additional pages than the application form, but make sure it is secured to the main award application form, and note down on all pages your national insurance number, your full name and your post code.

    keep copies of the whole application.

    this will give you a better idea of what that form requires, and you have added much more content that they have to read and take in, the more you put down the higher your chances become of getting the award.

    i noticed you are under rheumatologist, you can ask if a neurologist could help you - some are more specialised than a rheumatologist. this varies from hospital to hospital across the country. but might bew worth a try and something else you can add to appeal. about your appeal, it probably states you have 28 days - this is not actually true, you can phone the dwp and ask for a 14 day extension, so you can get further evidence.

    regards,

    les. this="" word="" is="" not="" a="" well="" known="" keyword,="" so="" it="" is="" one="" i="" would="" use.="" an="" example="" i="" suffer="" from="" fibromyalgia,="" which="" has="" many="" intermediate="" disorders="" that="" i="" suffer="" from="" which="" include="" the="" following:="" then="" list="" how="" each="" one="" and="" roughly="" how="" often="" they="" affect="" you.="" fibromyalgia="" is="" classed="" as="" an="" 'invisible'="" pain="" by="" many="" people,="" yet="" you="" suffer="" daily="" from="" it,="" in="" one="" way="" or="" another.="" the="" problem="" is="" with="" filling="" in="" the="" actual="" pip="" application="" form,="" since="" 72="" points="" come="" from="" the="" care="" side="" and="" just="" 24="" points="" on="" the="" mobility="" side.="" now,="" you="" can="" see="" why="" it="" is="" difficult="" to="" get="" the="" mobility="" component="" on="" the="" high="" rate.="" some="" people="" with="" fibromyalgia="" do="" manage="" to="" get="" both="" on="" full="" rates.,="" so="" it="" is="" possible.="" remember="" this="" application="" form="" is="" your="" key="" to="" obtaining="" the="" award,="" and="" in="" exceptional="" circumstances="" no="" face="" to="" face="" is="" needed.="" the="" chance="" of="" getting="" this="" far="" with="" no="" face="" to="" face="" is="" very="" slim.="" the="" dwp="" atos="" have="" very="" little="" on="" fibromyalgia,="" in="" fact="" only="" two="" instances="" and="" it="" covers="" 5="" pages,="" and="" most="" of="" that="" is="" back="" pain.="" their="" a-z="" of="" illnesses="" is="" 800="" pages,="" so="" that="" is="" bad,="" when="" compared="" to="" the="" british="" medical="" journal="" at="" 17="" pages="" on="" just="" fibromyalgia.="" that="" is="" how="" much="" they="" know,="" which="" is="" very="" little!="" never="" fill="" the="" pip="" application="" form="" in="" online="" -="" the="" chances="" of="" winning="" your="" award="" is="" very="" low.="" the="" reason="" for="" this="" is,="" you="" cannot="" add="" much="" content="" of="" your="" own,="" so="" you="" are="" very="" limited="" to="" how="" to="" describe="" pain,="" headaches,="" cramp,="" spasms,="" etc.="" with="" a="" normal="" form,="" the="" sky="" is="" the="" limit="" -="" but="" do="" not="" just="" rush="" it="" through,="" take="" a="" few="" days="" if="" you="" wish.="" the="" more="" information="" that="" is="" on="" this="" application="" the="" better.="" let's="" say="" for="" an="" example="" you="" got="" to="" question="" 6="" with="" probably="" 6="" alternative="" answers,="" do="" not="" just="" tick="" the="" box.="" add="" a="" note="" please="" read="" page="" 1="" of="" my="" additional="" information="" -="" then="" on="" this="" page="" go="" right="" in="" to="" detail,="" how="" and="" why="" this="" is="" not="" possible,="" if="" you="" need="" help="" from="" a="" partner="" then="" put="" this="" down="" as="" well.="" you="" may="" end="" up="" with="" more="" additional="" pages="" than="" the="" application="" form,="" but="" make="" sure="" it="" is="" secured="" to="" the="" main="" award="" application="" form,="" and="" note="" down="" on="" all="" pages="" your="" national="" insurance="" number,="" your="" full="" name="" and="" your="" post="" code.="" keep="" copies="" of="" the="" whole="" application.="" this="" will="" give="" you="" a="" better="" idea="" of="" what="" that="" form="" requires,="" and="" you="" have="" added="" much="" more="" content="" that="" they="" have="" to="" read="" and="" take="" in,="" the="" more="" you="" put="" down="" the="" higher="" your="" chances="" become="" of="" getting="" the="" award.="" i="" noticed="" you="" are="" under="" rheumatologist,="" you="" can="" ask="" if="" a="" neurologist="" could="" help="" you="" -="" some="" are="" more="" specialised="" than="" a="" rheumatologist.="" this="" varies="" from="" hospital="" to="" hospital="" across="" the="" country.="" but="" might="" bew="" worth="" a="" try="" and="" something="" else="" you="" can="" add="" to="" appeal.="" about="" your="" appeal,="" it="" probably="" states="" you="" have="" 28="" days="" -="" this="" is="" not="" actually="" true,="" you="" can="" phone="" the="" dwp="" and="" ask="" for="" a="" 14="" day="" extension,="" so="" you="" can="" get="" further="" evidence.="" regards,="">

    an example

    i suffer from fibromyalgia, which has many intermediate disorders that i suffer from which include the following:

    then list how each one and roughly how often they affect you.

    fibromyalgia is classed as an 'invisible' pain by many people, yet you suffer daily from it, in one way or another. the problem is with filling in the actual pip application form, since 72 points come from the care side and just 24 points on the mobility side. now, you can see why it is difficult to get the mobility component on the high rate. some people with fibromyalgia do manage to get both on full rates., so it is possible.

    remember this application form is your key to obtaining the award, and in exceptional circumstances no face to face is needed. the chance of getting this far with no face to face is very slim.

    the dwp / atos have very little on fibromyalgia, in fact only two instances and it covers 5 pages, and most of that is back pain. their a-z of illnesses is 800 pages, so that is bad, when compared to the british medical journal at 17 pages on just fibromyalgia. that is how much they know, which is very little!

    never fill the pip application form in online - the chances of winning your award is very low. the reason for this is, you cannot add much content of your own, so you are very limited to how to describe pain, headaches, cramp, spasms, etc.

    with a normal form, the sky is the limit - but do not just rush it through, take a few days if you wish. the more information that is on this application the better. let's say for an example you got to question 6 with probably 6 alternative answers, do not just tick the box. add a note please read page 1 of my additional information - then on this page go right in to detail, how and why this is not possible, if you need help from a partner then put this down as well.

    you may end up with more additional pages than the application form, but make sure it is secured to the main award application form, and note down on all pages your national insurance number, your full name and your post code.

    keep copies of the whole application.

    this will give you a better idea of what that form requires, and you have added much more content that they have to read and take in, the more you put down the higher your chances become of getting the award.

    i noticed you are under rheumatologist, you can ask if a neurologist could help you - some are more specialised than a rheumatologist. this varies from hospital to hospital across the country. but might bew worth a try and something else you can add to appeal. about your appeal, it probably states you have 28 days - this is not actually true, you can phone the dwp and ask for a 14 day extension, so you can get further evidence.

    regards,

    les.>

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  • Posted

    Hi Lion,

    http://www.benefitsandwork.co.uk/

    Go to this web site IT IS FANTASTIC its run by a couple of blokes who thought it was unfair the way the "them" rode roughshod over "us" and that they seemed to have all the power. This site, you do have to join to get the most out of it but its not expensive, but oh so worth it. I have been with them for about 7/8yrs? now (you usually get an email as your years up offering you next year at a discount).

    I realy cant praise them enough, and no I dont work for them but they have for me and my wife.

    Good luck

    Dont let the B*****ds grind you down

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  • Posted

    Hi Lion

    Sorry to hear your having a bad time with the illness and that you were not awarded PIP. From what I have read in various places Fibro is a bit hit and miss when it comes to claiming PIP. Some people are awarded 0 points and others get the enhanced award of both.

    I am currently going through the process myelf (f2f next week) but I unfortunately didn't realise how much help there was for helping with the process until after I had sent the form back.

    I have now got an advice worker (whom I went to for something else) who has offered to attend the f2f with me. He said that a lot of claimants fail to be awarded PIP until after an appeal so I think it's definately worth appealing.

    Good luck with it and let us know how you get on.

    Hope you have a good (pain freeish) day and gentle hugs x 

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  • Posted

    Hi there.

    i totally agree with Les63. I went 4 years in constant agony before I was finally diagnosed with Fibro. I fought for years with Disability because I have an on going back problem and I had surgery which only made it worse. So with that and the FIbro pains life is just so crappy. I claimed for Disability again last year and this time they awarded me the higher rate mobility. I now have a car which makes things a bit easier for me but I only go out when I absolutely have to because the pains most days are just unbearable. I did what Les63 said and wrote in all the available boxes describing every little detail, it took me a good couple of weeks to fill it all out. I could only manage a few questions at a time as I get Fibro fog and it really plays havoc, especially trying to have conversations with people, I get lost half way through and forget what I was saying. So what I'm saying is definitely appeal and take as much time as you need. Best wishes xxx

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    • Posted

      Hi, yes Les is very informative, he helped me out too. I also get higher rate mobility. I have my own car, but unfortunatly hardly ever go out.I always think yes I will go out tomorrow for the day, but tomorrow comes and here I am still looking out the window.
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    • Posted

      Thank you for the compliments, always welcome!

      I have helped quite a few people with DLA and PIP forms, I don't think I have had any denied yet. Most come back thanking me for helping them. The Guidelines for DLA or PIP does not actually tell you how to fill the form in for a better chance of winning your case.

      If you look at Fibromyalgia in detail, there is over 100 possible disorders relating to this syndrome, which is where many claimants do not know how to or perhaps list them in detail. Obviously, each claimant has different variantions of pain, and may not know how to explain the pain they feel or is related to other problems.

      Let's look at say you put "back pain" - but on a pain factor how would you explain this, or even is it in your muscle, a nerve or deriving from a bone. The actual answer could be all 3 or just 1. What you need is a pain scale so you can measure it at least to a degree. You could have a pain in your knee or behind it, this does not mean the pain derives from your knee, which can be confusing, hence why Fibromyalgia is difficult to diagnose, but the pain could be from a bad disc in your back, this is why so many people associate Fibromyalgia with back pain, it is one confusing disorder.

      Say you could explain the pain you have got and go right in to detail on a PIP form, your chances of getting the Award would be greatly improved.

      I am going to have a word with Alan (Enis) the Moderator to see if I can post a Useful post on Pain Tools which allow you to describe the pains but also links to libraries of videos regarding Pain.

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