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Fibromalygia

Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
Hi I've just been diagnosed with fibromyalgia after 18 months going back forth to my gp with chronic pain all over my body. Trying different medication and nothing worked. So my doctor sent me to see rheumatology and he diagnosed me strait away with fibromyalgia. I have other medical conditions too. I'm wanting to apply for pip they say it goes on what help you need unfortunately I don't need help only help I need is when I go shopping. Pain is all over my body can't sleep well headaches. I can walk 20m but less then 50m. Do you think I should apply for pip. 

Replies

  • JurphJurph Member Posts: 346 Pioneering
    I think it's worth it. Try and research the descriptors a bit more. Maybe try an online test?

    I have Fibro too and as it fluctuates, it was hard to prove. I scored 0 points at the assessment but won at tribunal.
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Thank you. I will send for forms and get cab to fill it out as I'm no good with wording paper work. I did do a pip test and it was 8 points. Is it worth making appointment with my gp to see if he can provide me with letter also send off for all my medical records. Many thanks
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi,

    PIP isn't awarded based on a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors. Needing help with your shopping won't be considered under any of the PIP descriptors. Washing/dressing/preparing food/managing toilet needs/dressing/undressing are just some of the activities included in the PIP descriptors. 



    Evidence will be needed to support a claim and a face to face assessment is most likely because most people have them.




    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    I've looked at the descriptors sounds like I would qualify got 10 points. So I'm going to go ahead with the claim. Do you think I should put all my medical conditions down including my fibromyalgia. As I have lot medical conditions. Do you think I should get cab to fill in my forms. 
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Hello I'm new to this site. I've looked at the descriptors and scored 10 points. I think I will go ahead with the claim. I've got so many medical problems. Do you think I should get cab to fill in the form for me. 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Joycemcnally1961   Pleased to meet you.

    Please can I suggest that you do contact CAB.

    Always a good idea.

    I use them all the time.

    Please can I add make some draft answers on paper. Then make an appointment with CAB.

    They will use  evidence and your answers fill in the form with you beside your side.

    Very much informative and very much helpful.

    I have been using CAB for a number of years.

    Please if we can help with anything else please get in touch we are here to support you.

    Please take care.

    @thespiceman






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  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Thank you. These health professionals are not qualified in your condition. They say they don't give the points they say its the DWP I don't know how far it's true I was told its the health professionals who make the decision not DWP. Many thanks for your reply. When they say do you need a aid for the bath what do they actually meen by aid. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Joycemcnally1961   Thank you for reply.

    The assessors are there to do an assessment. Based on that report the DWP makes the decisions.

    Have when you receive any forms will include a booklet . Please read carefully what is contains.

    There is a lot of information and guidance.

    We have information on the PIP benefit on our website.

    We are here to answer any questions you may have.

    There is much negativity and misinformation about any assessments. Been claiming a long time. Think the positives.

    I mentioned CAB because I used them . Had no support worker. Used to have them fill them in for you.  If you have any one like that care worker or support worker can be useful.

    I have the understanding there are members of the staff. Who belong to CAB do this all the time.

    I would as I suggested draft some answers to each descriptor.

    Best you can the information you need say  about yourself.

    Then you go down to CAB.  

    I got an appointment two ladies by my side wrote in it the correct wording and text.  The information I supplied very helpful and used that.

    Prompting by my self and her colleague we complied the form. Lots of advice and guidance plus things I need to know.

    Which I had already did know. Yet it is good to have them there.

    An aid is something you need to bathe safely.  Could be grab handles .

    Shower seats. Are examples.

    Please wish you all the success to a positive outcome.

    Is  there anything else please get in touch happy to help.

    Please take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Thank you help was much appreciated. When they said aid thought it could be something you bath yourself with like along handle with sponge on the end so you can get to your back. Many thanks 
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    So when you sent your forms back to pip can I ask did you actually get any points or did you go for a tribunal hearing. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Thank you help was much appreciated. When they said aid thought it could be something you bath yourself with like along handle with sponge on the end so you can get to your back. Many thanks 
    A long handle sponge is not classed as an aid for PIP purposes because these are used everyday by people without a disability.

    For the purpose of the PIP assessment, aids and appliances may be everyday objects, but whether they are considered as aids in any particular case depends on how the claimant uses the object compared to how (if at all) it might typically be used by someone with no relevant impairment. Where the object would usually or normally be used in the same way by someone without any limitation in carrying out the relevant activity, it is unlikely to be considered an aid or appliance, for example sitting on a bed whilst getting dressed or using a pan with a rubber-grip handle when cooking. In those instances where claimants make use of such items, they should be scored as being able to complete the activity unaided.

    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Poppy thank you for your feedback.. I do have to sit on the bed to put my cloths on and take off standing is a risk case I topple over with pain in my legs because as my knees have give away before that's why I sit. Many thanks poppy. 
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Thank you for your feedback. Will only put down the main one fibromyalgia. Many thanks. 
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Many thanks will do list up. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I think you misunderstood me, sitting on a bed to dress and undress is unlikely to score you any points in this activity.

    Aids include things like, walking sticks,crutches,canes, grab rails, levered taps, perching stools, bath/shower seats etc.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Yes poppy looks like I've misunderstood you. Anyway many thanks. 
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Has anyone actually scored points  for fibromyalgia. Many thanks everyone. 
  • JurphJurph Member Posts: 346 Pioneering
    Has anyone actually scored points  for fibromyalgia. Many thanks everyone. 
    I was awarded Standard Care and Enhanced Mobility. I have Fibromyalgia. I had to take it to tribunal though. I didn't score any points at the assessment.
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Don't think anyone scores points. They should think we have to live with this and it's a very chronic pain that is never going to get better if anything it will get worse. Many thanks for your feedback. 
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Thank you. That's good to know that a lot people with fibromyalgia score at assessments. Just I'm getting myself all worked up over it. Many thanks. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Yes, i claim PIP, standard daily living and Enhanced mobility, never had a problem claiming but i have other conditions too.

    As you know PIP isn't awarded based on a diagnosis and you can't compare 2 people. It really depends how your conditions affect you.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Many thanks poppy. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    May i ask if you've read the links i posted above? It will definitely help if you do read them.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Yes I have but also got some copy's from cab when I went to see them. They also said they would fill forms in for me. I'm also going to send off to the hospital for all my medical records. Many thanks. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    No problem. I wouldn't advice sending all your medical records, especially if it's a huge amount because they won't read them all. Take a look through them as see what's relevant against the PIP descriptors. Less is more when it comes to evidence and sending mountains of evidence that isn't relevant won't help.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Thank you poppy will do sort out what's needed. Many thanks. 
  • deb74deb74 Member Posts: 754 Pioneering
    Hi @ Joycemcnally1961 I wrote a list of my disabilities and limitations and went to the cab to help me fill in the form. They were really helpful and my pip was approved first time.
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Deb thank you. So best to make a list of my medical problems. Could I ask if you use a stick. So you got awarded first time. Many thanks deb. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Joycemcnally1961 and a warm welcome to the community! I wish you the best of luck with the claim and please do let us know if you have any further questions. The above advice has been really helpful.
    Community Partner
    Scope

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  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Thank you chloe for you message. I'm just waiting for forms from the DWP pip. Many thanks. 
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Hi just sent my pip form back today with help from cab. Sent all the information that was required . How long does it take before you have to go for a medical. And what questions do they ask you at the assessment. Thank you 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    It will depend on the backlog in your area but it can be anything from a few weeks to several months.

    During the assessment you will need to verify what you wrote in the form, so hopefully you kept a copy to have a read through before the assessment. If they need any other information they will also ask you during the assessment but what they ask will depend on how your conditions affect you.

    You'll be watched from the minute you arrive to the minute you leave, this is all part of the observations.


    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Thank you poppy. Yes I know they watch you from the minute you arrive to the minute you leave. When I went to cab they didn't actually ask how your medical affects you. Didn't actually ask how long it takes you to get out bed or what's your sleeping pattern  like at night or is there times you don't get out bed nothing like that. So can I write down all this before I go for assessment. Many thanks. 
  • cristobalcristobal Member Posts: 966 Disability Gamechanger
    @Joycemcnally1961 - I had my my assessment at home, so it's possible that it might be different if you have to go to and assessment centre..

    My memory is a bit patchy so to help me I had a copy of my PIP form in a folder to refer to. I had made a few notes on it - for example I get tired very easily and made a note of how often, how long for, what effect it had. Similarly I had a few different examples to the ones I'd given on the form.

    I believe, and others may correct me, that the assessment should be about how you were when you filled the form out although this didn't seem to be the case with me.

    Bear in mind also that you have to be able to carry out tasks 'reliably' - i.e. safely, repeatably, to a good standard, and in a timely manner. When I was asked "can you do x" if I couldn't do it 'reliably' then I answered 'no' - and the assessor asked more questions to find out why.


  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Thank you cristobal. So I could go and get my pip form photo copied and take with me to pip assessment and write few notes down. I didn't fill form in cab filled in due to my consitrasion I have lot medical problems including my main one fibromyalgia. I do get tired a lot. Many thanks. 
  • scape03scape03 Member Posts: 29 Courageous
    Completely agree with @cristobal's advice about having notes in front of you to jog your memory, however this was used against me by the HCP who commented that I was fully capable of finding and referring to information on a sheet. I never professed to not being able to do this! Needless to say I wasn't awarded PIP but was successful at MR.
  • CressidaCressida Member Posts: 770 Pioneering
    @Joycemcnally1961 hello. I mayhave missed it above or it may be in the links but I think any aids such as walking sticks and crutches, perching stools etc need to be been given by OT's or suchlike. I don't think they count if it's something you supplied yourself. I may be wrong and I'm sure someone will come along and correct this. :) They will ask who supplied it. I have a crutch which I sometimes need and they asked me who supplied it. 
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Hi cressida. Thank you for your reply. The stick I have was done through my GP someone came out to see me. Thank you. 
  • Joycemcnally1961Joycemcnally1961 Member Posts: 35 Listener
    Scape03. Thank you for your reply. So writing down notes you can take with you when you go for your assessment. Many thanks. 
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