I have Neuropathy. Anyone else? I've applied for PIP but they've said there's a postal backlog

1984cathy
1984cathy Community member Posts: 29 Connected
edited August 2021 in PIP, DLA, and AA
I have been diagnosed with Neuropathy and is very serious in the bottom half of my body in my feet and ankles. my feet feel like someone is slashing my feet with a razor blade and is almost impossible to sleep at night, I feel like I could kick the wall hard, it is so intense, The pain is not restricted to just this area as the pain is all over and making me quite ill in my self, I just can't sleep, When and if I do sleep I only for short periods then the pain starts again if only I could get a good night sleep . Does anyone else suffer from this condition and how do they cope. I currently claim PIP at the lower rate, This Neuropathy has affected all the deciphers in the claim form. I cannot get the Motorbility as I am too old. I called the DWP and they advised me to write how Neuropathy affects me which I did. The excuse now is they say there is a postal backlog with the Royal Mail. what a load of rubbish the answer is the DWP can not cope in their own departments

Comments

  • mancpam
    mancpam Community member Posts: 3 Connected
    Hi. I have neuropathy and have continuous pins and needles in my feet. When I try to describe it to people I tell them it feels like my feet are on fire and it's like my feet are squashed into shoes two sizes too small. It's worse after I've walked. I don't know if your doctor has prescribed pregabalin or gabapentin. They used to be for people with epilepsy but they didn't work so now doctors prescribe it for neuropathy. They don't take away the pain completely. Nothing can unfortunately. My doctor also prescribed capsaicin cream which has chillies in it. Chillies numb the nerves. I have a woman that massages my feet then applies the cream. It really helps.  Have you been tested for diabetes as neuropathy can be a side effect of that? 
  • poppy123456
    poppy123456 Community member Posts: 59,054 Championing
    1984cathy said:
    The excuse now is they say there is a postal backlog with the Royal Mail. what a load of rubbish the answer is the DWP can not cope in their own departments

    It's not excuse, there is actually a postal backlog. The country maybe slowly returning to normal for some people but the pandemic continues and we've been in this same pandemic since last March. Backlogs are huge....
  • 1984cathy
    1984cathy Community member Posts: 29 Connected
    i would like to know how people like us on disability allowance answer a question which is always asked?How does this neuropthy affect your daily living.I told the DWP it affects me in every decipher on the form,standing walking getting dresses you name it on the deciphers i cant do them,I was told by the DWP that this is not an answer,what do they expect  me to say  
  • poppy123456
    poppy123456 Community member Posts: 59,054 Championing
    1984cathy said:
    i would like to know how people like us on disability allowance answer a question which is always asked?How does this neuropthy affect your daily living.I told the DWP it affects me in every decipher on the form,standing walking getting dresses you name it on the deciphers i cant do them,I was told by the DWP that this is not an answer,what do they expect  me to say  

    Telling then you can't do something doesn't tell them why you can't do that activity and what would happen if you attempted to do it.
  • maryjane67
    maryjane67 Community member Posts: 16 Listener
    hi i just been diagnosed with burning feet syndrome  also in hands  only on paracetamol and amitriptyline at night  ,feet burning all day and hands become hot and swell up after doing anything  also have arthritis in knees and shoulder does anybody having burning feet syndrome what pain killers work  how do you cope  
  • niknak7278
    niknak7278 Community member Posts: 85 Empowering
    My husband has just been diagnosed with Functional Neurological Disorder.  He’s had neuropathy pain for years. He had his PIP telephone assessment on Monday that lasted almost two hours.  Physiotherapy can’t start until his pain relief is under control.
  • maryjane67
    maryjane67 Community member Posts: 16 Listener
    sorry to here about your husband niknak  must be hard  for you, i am also a carer for my husband so l know the feeling hope anything goes well for you and your husband take care 
  • poppy123456
    poppy123456 Community member Posts: 59,054 Championing
    hi i just been diagnosed with burning feet syndrome  also in hands  only on paracetamol and amitriptyline at night  ,feet burning all day and hands become hot and swell up after doing anything  also have arthritis in knees and shoulder does anybody having burning feet syndrome what pain killers work  how do you cope  

    HI,
    We are not medical professionals here and can't give you any advice regarding medication and it is also against the rules of the community for anyone to do this. You really need to speak to your GP, if your usual GP isn't helpful then see a different one.
  • maryjane67
    maryjane67 Community member Posts: 16 Listener
    sorry poppy ok
  • kitkat23
    kitkat23 Community member Posts: 69 Empowering
    I have chemo induced neuropathy....chemo finished last year....I take medication.... but not with any real effect.... I just wrote examples of what happens when I attempt the PIP tasks....I applied last September....got my award end of march this year....it is what it is .....its the same wait for everyone ... hopeall goes well 
  • erm
    erm Community member Posts: 65 Contributor
    1984cathy said:
    I have been diagnosed with Neuropathy and is very serious in the bottom half of my body in my feet and ankles. my feet feel like someone is slashing my feet with a razor blade and is almost impossible to sleep at night, I feel like I could kick the wall hard, it is so intense, The pain is not restricted to just this area as the pain is all over and making me quite ill in my self, I just can't sleep, When and if I do sleep I only for short periods then the pain starts again if only I could get a good night sleep . Does anyone else suffer from this condition and how do they cope. I currently claim PIP at the lower rate, This Neuropathy has affected all the deciphers in the claim form. I cannot get the Motorbility as I am too old. I called the DWP and they advised me to write how Neuropathy affects me which I did. The excuse now is they say there is a postal backlog with the Royal Mail. what a load of rubbish the answer is the DWP can not cope in their own departments
    My middle son has been to the muscular skeletal clinic and neurologist and been prescribed anti seizure medication on top of the other medication he has for gout high blood pressure psoriasis IBS oversized tongue sleep apnia dyslexia but 35 years ago schools just said you were slow if you had reading writing issues, but as told on here you do not need to have had an official diagnosis if it affects you badly and use aids or help to help you manage reading writing tasks.
    Hi. I have neuropathy and have continuous pins and needles in my feet. When I try to describe it to people I tell them it feels like my feet are on fire and it's like my feet are squashed into shoes two sizes too small. It's worse after I've walked. I don't know if your doctor has prescribed pregabalin or gabapentin. They used to be for people with epilepsy but they didn't work so now doctors prescribe it for neuropathy. They don't take away the pain completely. Nothing can unfortunately. My doctor also prescribed capsaicin cream which has chillies in it. Chillies numb the nerves. I have a woman that massages my feet then applies the cream. It really helps.  Have you been tested for diabetes as neuropathy can be a side effect of that? 

     he got awarded standard for both, cos the assessor lied and the person who did the award did not take into account what was put on his form and made up stuff about medical history which they did not have, in order to hand low or no points, ignoring the facts we put. We appealed BUT it was BEFORE he finally got appointment for neurologist, who diagnosed neuropathy as the cause of muscle joint back pain drooping eyelids muscle twitching etc etc so prescribed anti seizure medication, we are hoping the M R goes well if not he will go to tribunal! still not heard back, its been weeks he did get a letter saying send repeat prescription list which we had included originally and again for appeal they said add any new stuff so we mentioned sent the MSK CATS appointment and stated the physiotherapist said massaging is needed several times a day to help with pain as we stated on original form which was ignored. He used to work in a physical job now cannot do physical jobs mainly works from home on telephone or computer