Pip and fibromyalgia — Scope | Disability forum
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Pip and fibromyalgia

toni1979
toni1979 Member Posts: 13 Connected
edited April 2018 in PIP, DLA, and AA
Has anyone applied and been successful for getting pip payments and suffer with fibromyalgia?
Thank you; I'm all new to this!
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Comments

  • lindadenise
    lindadenise Member Posts: 302 Pioneering
    I have fibromyalgia along with dystonia and spinal stenosis and inpinged nerve in spine.
    I only got low rate care 
    No mobility but i have done a Mandatory reconsideration.
  • toni1979
    toni1979 Member Posts: 13 Connected
    Thank you, I've just been reading people's stories and experiences on here, it's truly awful that we are not understood sometimes. I struggle to walk far and sleeping is out of the question. Fingers crossed I'll be ok and get awarded something x
  • lindadenise
    lindadenise Member Posts: 302 Pioneering
    Yes hope so i am the same under 2 nuerologists for my Dystonia and back cant walk any distance without pain. I feel we are being failed by the DWP they dont seem to know anything about our illnessess. Good luck hope you get something.
  • toni1979
    toni1979 Member Posts: 13 Connected
    edited April 2018
    Agreed! I hope it all goes ok for you too x
  • debsidoo
    debsidoo Member Posts: 325 Pioneering
    Hi toni1979
    I have fibromyalgia among other things and my pip application was successful. Please don’t be put off by all the horror stories you read each case is decided on its own merits so provide as much evidence as possible and good luck.
          Debsidoo.x
  • toni1979
    toni1979 Member Posts: 13 Connected
    Thank you! I will tell them everything and how difficult things are for me and that's all I can do. Really need to work part time as full time is too much but the drop in money scares me so any.thing would help x
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    @debsidoo good to know. I’ve got fibro and am applying for pip. This was diagnosed after I started the process and will be going on my written evidence. What astonishes me is all the other stuff on top of the fibro getting diagnosed. My gp has called my condition chronic pain for years and said no evidence to send me to consultants. So I went to another gp and he said I have fibro with other issues. It’s just the start of being properly diagnosed for me but reading stuff on here has helped me to realise there are other potentially treatable conditions on top of fibro that I’ve just accepted as normal. Every single health issue I have has been a battle for me to get diagnosed. It’s like if it’s labelled then the gp has to refer you on and for some reason mine is reluctant to do so. Happy to hand out meds though. I am not investing in getting pip but I am trying anyway. It’s such a stressful process and it takes a toll on health issues. Thanks and good luck all
  • newons2206
    newons2206 Member Posts: 2 Listener
    I cannot stress enough what has been said about evidence. I have ME/CFS which is similar to fibromyalgia in how the ‘outside world’ sometimes view it. But I provided evidence from my ME consultant and occupational therapist that I couldn’t work and needed a level of support on a daily basis at home and was awarded both elements at basic rate. Include documentary evidence of how your condition effects you from experts in the field - your fibromyalgia clinic, occ health, counsellor - they should all write to your GP to update them after your appointments and you’re entitled to copies of these at no charge. Also on the day of the assessment get dropped off at the door by a friend, don’t make a superhuman effort to move around, and refuse any rest if it’s too painful and say it’s too painful! Be very clear about what you can and can’t do but don’t try to be brave - they need to see the real you. 
  • newons2206
    newons2206 Member Posts: 2 Listener
    That should say refuse any TEST not rest
  • shazier
    shazier Member Posts: 82 Courageous
    Hi.
    I to have fibromyalgia arthritis depression agoraphobia  along with other conditions and  was awarded enhance rate for living and mobility, When being crossed over from DLA,  i was on the indefinite award but pip is different to dla.
    my cross over was three yrs ago and i have my review coming up in June, im worried sick to,
     reading other cases can scare us to death, i have started reading up things that  i have never done before, i m shocked at some of the storys i have read or listend to, m daughter showed me a clip on you tube from the bbc, i wish i hadnt of watched it now, i went on to look at other stories, some of the stories are disgusting, what im saying is dont concentrate on all the neg stories.

    We know two people having the same condition can affect both of them in different ways..and its based on your own experiences and the difficulties that you have.
    There are some peole that say, well i can do this or that and i have firo or arthritus, dont let people like that put you off. 
    this is your case and how it affects you not what the diagnoses itself

     pip form is all about if you meet the criteria so explain how for example on
      prepring food...if you have difficulties with preparing food to explain the difficulty you have and why...... if  you experience pain need to sit down due to pain or you may get dizzzy when standing to long. if you need assisitance, prompting or someone to prepare food for you, expalin why,
    can you prepare using an aid, how long does it take you, can you do it reliable and saftly and in a resonable timme
    , if you drop things say so , anything that causes you problem with thi activity., if you cut yourself say so .

     if your like me and find it difficult to put your difficulties into sentences ask for help.

    I havent been a member for very lng and very rarley go on the pc but, since joining scope, i have started to use my pc again.
    I cant  type for long periods of time nor can i concentrate for very long so it takes me much longer to than it would before i started with my problems, my spelling is terrible so im cheating and using grammar lol
    As other have said to me, try not to worry say miss stress head here, lol
    thi group is a wonderful group, they make you fell so welcome and that makes it easier to ask for the helpt you need.
    you are amongst friends. 

    Can anyone correct me if i have gotten any thing wrong here and not given the correct advise




  • toni1979
    toni1979 Member Posts: 13 Connected
    Thank you, that has been very helpful. I came across scope yesterday and I absolutely live all the support so far. I joined a few groups on fb but they're mainly American and things are quite different over there. I'm going to start writing notes and kept a daily diary so I don't forget anything!
    Thanks again x
  • sue66
    sue66 Member Posts: 124 Pioneering
    Its true if we dwell on all the negative outcome stories then none of us would apply. I must admit ive a sort of already made up my mind its not worth me even trying to get the PIP for M.E.of which i was given higher rate mobility when i applied for DLA like 22 yrs ago because of all the horror stories ive read about people losing their higher rate and their mobility cars with it.  Its always being said about how its not what you have but about how what you have affects you. Why then are people who are clearly finding life very difficult, need help with many things, cant walk far, in pain, feeling depressed, need help with personal things still coming away with 0 points. I have no social worker, under no consultant, not on any medication so my case is going to look very weak when i do get the application to apply for the PIP. . This is why i think why bother. Read from the outset back in 2013 that people with M.E. are one category that are finding it the hardest.  I will actually be glad when its over and done with, the letter comes through and then i will decide. 80% of me is saying dont even bother. Sorry folks but this how i feel this morning. Im just grateful for each morning there's no brown envelope in the post and at least i have state pension to survive on which is more than what some of you have. Losing your DLA, and then not getting PIP losing your cars and being working age must be horrendous and very worrying indeed and i really feel for this category. 
  • Alfieboy
    Alfieboy Member Posts: 4 Listener
    Please refer to my post regarding the illuminating conversations I have had with my Consultant Neurologist and the Health Professional who conducted my PIP face-to-face consultation.  It's not for the faint hearted I'm afraid…..!
  • iharris85
    iharris85 Member Posts: 4 Listener
    Hello, I have recently been diagnosed with fibromyalgia by my GP, I am a 33yr old male, who until about a year ago was fit and healthy, I now struggle on a daily basis getting up and down the stairs both at work and at home, walking, standing and even just resting as my legs, knees, hips, feet and ankles give me a great deal of pain. There have been a few occasions where i have needed to shuffle myself up and down the stairs on my bottom, as I haven’t had the strength or the pain has been so bad I am not confident in case I fall. (Which I have done) got the bruises to prove it. I am also finding it hard to drive, as I don’t have the strength to operate the clutch peddle or some this even sometimes change gear. As I don’t always have the strength in my arm/hand to grad and move the gear stick, my GP has given me co-codamol 30mg/500mg to help with the pain, but it’s not helping. I have recently put in my claim for PIP I am yet to hear anything back, I was asked to send off my ID which I have done, can the community give me some advice on the next steps and any general advice on how you live/cope with you fibromyalgia that might help me would be greatly appreciated. Thanks in advance. 
  • toni1979
    toni1979 Member Posts: 13 Connected
    edited July 2018
    I have suffered the exact same symptoms for the past 2 years. I applied for pip and recently had my assessment and have been awarded nothing! I'm really not happy with their decision so am appealing it. I don't think the descriptors fit in with our condition. Yes I check walk 200 metres but in absolute agony!! I don't think it's a fair way of judging us at all. I've had to stop working as a teacher recently and taken a desk job and less hours which os also a massive pay cut. I'm really struggling... I hope u have better luck than me x
  • sue66
    sue66 Member Posts: 124 Pioneering
    toni1979 said:
    I have suffered the exact same symptoms for the past 2 years. I applied for pip and recently had my assessment and have been awarded nothing! I'm really not happy with their decision so am appealing it. I don't think the descriptors fit in with our condition. Yes I check walk 200 metres but in absolute agony!! I don't think it's a fair way of judging us at all. I've had to stop working as a teacher recently and taken a desk job and less hours which os also a massive pay cut. I'm really struggling... I hope u have better luck than me x
    Your so right there Toni the descriptors dont fit  with our condition, Im dreading having to apply for the PIP, on burrowed time me now, at least i dont have to worry about struggling to work as 67 and have a small state pension coming in. i really feel for all those of still working age and fail to get the points needed to have to sort of income. and forced to work in pain all day x
  • Matilda
    Matilda Member Posts: 2,590 Disability Gamechanger
    The rule for walking is how far can you walk WITHOUT PAIN.  Yes, you may be able to walk farther than 20m or 50m IN PAIN but you are not obliged to 'walk through pain'.

    In other words, if you can't walk farther than 20m before the pain, or stiffness or fatigue, starts then you should qualify for 12 points PIP mobility.

    Yes, we might be able to do things but we have to be able to do them RELIABLY as well. Have a look at the reliability criteria on the Disability Rights UK site.
  • toni1979
    toni1979 Member Posts: 13 Connected
    Thanks for this. I will have a look now! X

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