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Fibro & Degenerative Disc Disease - worth applying for PIP?

Sinead91
Sinead91 Member Posts: 1 Listener
Hi everyone, 

I hope you don't mind the post as I know other similar posts exist but I'm still rather confused.  I've just been diagnosed with Fibromyalgia after 3 years of investigations to rule out other causes of my chronic pain, and this is in addition to long term DD. 

Between these two conditions, I am struggling soooo much.  I'm a single parent, I care for my 3yo daughter and I'm an informal carer for my disabled mother and brother. I receive no help either physically or financially from anyone at all. 

I thought my bulging discs & DD were bad enough and then Fibromyalgia was suddenly onset after pregnancy. I've also been struggling with cystitis in the groin region & chronic tinnitus. My health has never been worse than it is now and I feel like its about time I asked for help. 

Before maternity leave was as a carer and I'm pretty sure that job blew out my second bulging disc. I have orthostatic intolerance, I cant stand or sit for very long, I can't actually stand still for longer than 5 minutes without having to crouch down to relieve the lower back pain pain and I suffer sciatica intermittently around every two weeks that lasts up to several days. I did struggle with these symptoms at work with less than sympathetic bosses.  

Throw the fibro into the mix and my legs and whole body feel more like an enemy than a friend. I struggle to sleep due to insomnia, foggy brain, and serious lower & upper back pain. I've tried 3 different second hand mattresses to help with the lower back pain but none of them have worked, the latest mattress does support my lower back but cause my upper back to seize up due to a lack of ergonomics, I suspect. 

I can barely use my legs in the mornings, or in the evenings although they do feel slightly better in the afternoons, however after a trip outside walking or shopping the pain can be really serious by the time I get back home and it can take either days or weeks for the worse effects of the pain to wear off and much to the dismay of my young child I find my self curling up on the sofa in pain & self loathing. My whole life revolves around chronic pain now, I avoid social events, activities with my child,  I avoid shopping, I'm avoiding dating and I avoid exercise because the pain is so overwhelming. 

I'm currently training to become a web developer as I knew when I left the last job that I could no longer complete physical work, which is also effecting my self confidence and previously I have always been active and psychically fit. I just took a mock PIP test and basically scored zero because none of the questions seemed relevant to my conditions. 

I can cook food I just need a stool when at the sink for periods longer than 5 minutes because of lower back pain, I can shower, I can dress, I can walk 200 meters etc... but nowhere in that mock test was there any place for me to talk about my sleep disturbances, lack of mobility in the mornings, orthostatic intolerance or after a short trip out etc. 

I don't drive an almost everything I need to get to requires bus journeys and plenty of walking and it's all just sooo difficult. I can't afford taxi fairs or to pay people to help me and all in all I'm miserable and my poor daughter deserves better.  They've just started me on Amitriptyline, but I've already got rotten side effects such as a numb tongue and bad taste, bad smell and sleepiness which isn't helpful at all.  

Is the actual PIP assessment more detailed? I have to force myself to complete daily tasks because my daughter replies on me and I feel like they are just going to dismiss me completely. 

If my claim was successful I'd use the extra money for travel expenses, like getting to the supermarkets for fresh food, taking my daughter to her activities, a new mattress and alternative therapies which aren't available on the NHS etc. Does anyone have any advice please? Sorry for the long post. 

Comments

  • poppy123456
    poppy123456 Member Posts: 25,620 Disability Gamechanger
    Hi,
    PIP isn't awarded based on any diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors.
    If it was the PIP self test you completed then i must admit i don't rate this at all. It's far from accurate, if you don't full understand the PIP descriptors and the criteria, few people do to be honest. It's very easy to either under score yourself, or over score yourself.
    Night time/sleeping is not part of the PIP descriptors, this was for DLA.
    It definitely helps to have more understanding of the descriptors and what they mean. Start here. https://pipinfo.net/
    You can also get some expert advice before applying to check that you can score enough points for an award because if you can't it would be pointless applying. Start here and choose the topic "welfare benefits" https://advicelocal.uk/


  • mikehughescq
    mikehughescq Member Posts: 8,269 Disability Gamechanger
    Online PIP tests, all of them, are useless things. Read the definition of “reliably” I’m the link provided by Poppy. Then…

    Go back and ask yourself the same questions but insert the word “reliably” into each question. That will take you some of the way towards understanding the PIP points score which might be available to you. Frankly though, based on the contents of your post, it’s not hard to see a successful case for PIP daily living. Using a stool in the kitchen is 2 points straight off and whilst you may be able to dress and bathe I would query whether you can do them reliably given the pain; lack of mobility; struggles with bending etc. 

    Lack of sleep is accounted for under reliability i.e. if it means you do things slower, less well or in an unsafe way. 

    Your case for mobility, strange as it might sound, is less clear cut but still worth pursuing.

    Short answer is that you should go for it. This may help. https://forum.scope.org.uk/discussion/56365/pip-form-filling#latest




  • wilko
    wilko Member Posts: 2,442 Disability Gamechanger
    Again @ poppy123456 and @ mikehughescq have given correct answers to the Old question can I claim PIP for this or that. Taking an online PIP test and asking yourself being honest can I do, preform the PIP descriptors activities safely repeatedly and in a timely manner. If not when you apply for PIP fill in the application form giving examples of why you are unable to complete the descriptors of what has or does happen every time you try or attempt each of the descriptors you are having difficulties with some descriptors you can manage fine other not so well. Take a test and see how you get on.
  • poppy123456
    poppy123456 Member Posts: 25,620 Disability Gamechanger
    wilko said:
     Taking an online PIP test and asking yourself being honest can I do, preform the PIP descriptors activities safely repeatedly and in a timely manner.

    I still really don't know why you continue to insist on giving advice on using the PIP self test. It's not accurate at all, unless a person fully understands the PIP descriptors and not many people do. Being completely honest with yourself when doing this test is still not going to be accurate.

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