Living with neuropathy

Good evening 

I have been sitting here for twenty minutes not really knowing where to start. I came across this site purely by accident.... When I was looking for something to help me.............

 Ok Here I goes ........ To help me wipe my bottom, I have a carer but cannot bring myself together to let an adult clean me you know..... My life was fantastic until I had two accidents that has left me disabled... Since 2013 it has been hell I can tell you. Right now I have been stuck in bed for the last two weeks on and off with sciatic nerve problems... I have multi-able neuropathy.... 

Anyway if anyone know of a tool I could let me know please 

27 Replies

  • Hi there

    I was wondering whether you have seen a Rheumatologist so that Fibromyalgia could be ruled out. 

    I have given you the link for the NHS Choices page. I am not sure if you have already read it? :

    Unfortunately I have no idea what would help your condition.  What has your GP said about it. Does she/he have any ideas for you?

    Wishing you all the very best 

    Lu x


  • Thank you for this, to be honest I have only just found a descent GP.. although there are limits. I have been getting Accuputure and she ruled out fibromyalgia... She has said its multiable Neuropathy due to the accidents.... If seems like my brain sends signals saying there is pain... I am in process of changing my pain team as the man never once investigated my condition or even examine me in 3 yrs. my GP is sending me to a back specialist and I will ask him about the above info my dear thank you again so kindly

  • Hello

    I'm so sorry to hear how Ill you are and how you're having difficulty managing.

    It must be very hard for you, I can totally understand where you're coming from. It's hard enough trying to live with an illness, let alone everything else that goes with it. 

    Please remember that the people who are there to help you are very nice people, who know what they are doing and expected to do. They would not do the job if they didn't want to. Being a carerer, nurse or dr means they expect to do certain things which we might think is not a nice thing to do. 

    Do you think you're loosing your dignity? If so please don't, you're ill and need help, so you're getting what you need!

    I don't know how much you can move etc. The Romans used to use a sponge on a stick. Have you looked on any web sites for aids that help the disabled?

    I know you're in a bad place at the moment, but please stay in there. Hopefully someone will be able to help you or suggest something on this forum.

    Please ask your dr for more help, if you feel like your really unable to cope, that's what they're ther for!

    Take care and try to be less hard on yourself.

    My thoughts are with you and hope that you feel better soon.

    Best wishes.

  • Oh thank you so much for your message.... It's seems like you talk from experience you have hit so many nails in your message.... You see I was the one that help vulnerable people all the time... from the homeless to people with confidence issues... Now that I am one of those people and living on constant pain I'm exhausted and just want it to stop even for an hour.... But I will stop feeling sorry for myself as they say

    I thank you for your kind words



  • Hi again

    It does everyone good to get things off of their chests, so no you're not feeling sorry for yourself, your ill and in a vulnerable place at the moment. A problem shared....

    It sounds like you have given so many people help and have cared for strangers. It's your turn to get help now! It's always hard for those of us who are used to helping others asking for help and feeling like we should still be strong and hate to feel vulnerable. The thing is we're all human and we have to try to come to terms with our illnesses and our restricted life. Believe me I know it's not easy, it's taken me nearly 18 months, but you can do it. You've reached out by posting on here and I hope you get the support that gives you you're fight back.

    Please take care of yourself.

    Hope you're feeling better very soon.

    Best wishes.

  • Bless you and thank you so much.... 

  • Hi there

    Bless you, this site has brought me life and such overwhelming support. You have me to a T, and I will surely try and accept and ask for help. You touched on acceptance of illness and I guess that's where I'm struggling a part from the pain... Thank you for everything you have said. Please feel free to share with me anytime x

  • Hello

    I am so very happy that joining the site has helped you feel better in yourself! 😊

    I do hope that you continue to feel better about yourself and keep posting your thoughts etc.

    I hope that your days get better.

    Take good care of yourself and best wishes.

  • So sorry to hear what you are going through ,  I have some knowledge of how you feel as I looked after my Mum and Aunt  as they got older and there was always a problem when it came to personal care ,  do you have an OT.  (occupational therapist ).   it is their job to supply things that will help you to live  at home, ask your Doctor if you are in any doubt, I do hope you get more help soon don't be afraid to ask, take care

  • Oh bless you I was a carer for my mummy... I was thinking about the OT, although she has closed my case maybe I have to speak with my doctor... Been on the phone with them as the doctor on call refused to come out three times... My GP called today with some sort of plan... Hate the medication...... Your all so kind on here really lifted my mood that I'm not alone. 

    So thank you again

  • You are right Susie  you are never alone on here, there's always someone to chat to 😃

  • I don't know of anything that would help with that. sorry.Be blessed.Peck🐤

  • Hi Susie4512

    I am so genuinely sorry to read of how you are suffering and struggling and I sincerely want to wish you all the best of luck. I knwo they are not popular or common in the UK, but I was wondering if you had considered a ''bidet'' to help clean you? I have pasted below the google definition of a bidet as there are different types:

    *A bidet (US i/bᵻˈdeɪ/ or UK /ˈbiːdeɪ/) is a plumbing fixture or type of sink intended for washing the genitalia, perineum, inner buttocks, and anus of the human body, and is typically installed in a bathroom. Lower-cost add-ons combining a toilet seat and "electronic bidet" are becoming increasingly popular as well.

    It may be something that is worth considering? And if you cannot afford one you could contact an Occupational Therapist or apply for a grant from either your local council or a charitable organisation? Please take care of yourself.

    All my hopes and dreams for you


  • Hi Ken thank you first this..... I've been looking online and I will check for this one my dear... Please feel free to share


  • Good luck my friend :)

  • Hi Susie,

    You sound like a lovely person and that often means you get fobbed off. I'm glad you found a good GP. That's always a good start. Was it her that ruled out fibro? Not that the treatment would be drastically different. 

    It seems people with chronic ain conditions just get told everything is down to the condition they have so I'm glad to hear that you are seeing a back specialist. I think people are often left in more, unnecessary pain.

    Nerve pain is the most horrific pain. Do you feel you've been given enough pain meds for the sciatica? Being in that much pain is bad enough, without having your ability to care for yourself affected so drastically. Do you have anyone around who supports you at all?

    Friars x

  • An occupational therapist can get you a special toilet put in that washes and dries you. I am a carer for a severely disabled lady who has many problems , Ot  assessment best way to start.

  • Hi there

    I have emailed the it fingers crossed and thank you very much


  • Hope you get help soon good luck.

  • Yes! If you go onto they have just the thing. It's not expensive either. Plus they deliver it to your door.

    You'll find it under toileting AIDS, bottom wipers. Happy shopping 🐸

  • Hi,  Sorebones ,   I  hope you don't mind me saying I think it's .    Missing the T it   Looks   an amazing site too 😃

  • Beep! I was happily typing away then autocorrect butted in! Thought I'd sorted it but thank you for noticing. It's of no use if it's wrong! 🐸

  • That's what I was thinking ,   Autocue doh 👎😃

  • Good afternoon hope your all well.... Things have been kinda rough and ended up going to hospital with pain heart racing and all. It is clear that they have not cures for pain, in one day I had 900g of gabapentan, 300g of tramadol, 8 co-dydramol, two dyasipan and nothing.... So I'm going to keep looking for pain relief but as for there meds no more.

    How is everyone

    Ps I found everything on complete care Sorebones thank you so much....

  • Hi I have nerve pain had it for 12 years due to a hysterectomy I wonder if you have been referred to a pain clinic and see if you could try a neuro stimulator it helps block the pain.

  • Hi Bella Nurse Gladys Emanuel (open all hour) have you had adhesions ruled out after you hysterectomy? They are SOOO painful I retired recently from gynae theatres and saw so many ladies come back to us with this problem...Have you had a follow up from your consultant since your surgery? Maybe go back and ask, they can do keyhole surgery under a spinal anaesthesia and look for adhesions clearly. Good Luck

  • Hi there

    I have not had a hysterectomy my dear hope your well though and thanks for checking in



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