hi my name is paul. I have HNPP with tip toe walking — Scope | Disability forum
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hi my name is paul. I have HNPP with tip toe walking

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paulmitch26
paulmitch26 Community member Posts: 27 Courageous
edited February 15 in Physical and neurological impairments
hi everyone im paul and i have HNPP with tip toe walking.
iv had this for around 3 years and i must say things can be difficult with my balance and the odd trip up, i can hardly stand without burning on my feet and the neuropathic pain is getting worse bit by bit
i have got enhanced on both pip elements but dont get out much to live my life as all my friends work and i live out of the way so spend a lot of time indoors, slowly forgetting who i am as a person, my social skills are now at a all time low, iv lost my talk skills with women also, its fair to say HNPP strips one of their self esteem 
im beginning to loose sensation in my hands now aswel, im only 33 im gutted.

i have never met anyone with HNPP or anyone who walks on their tip toes so feel like an outcast

i hope everybody is well on this nice bright sunday afternoon

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  • Sandy_123
    Sandy_123 Scope Member Posts: 50,084 Disability Gamechanger
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    Hi @paulmitch26 welcome to the forum, thankyou for telling us about yourself. Join in with the topics take a peek In coffee lounge to start off.  Do you have any hobbies that you could join and meet people that way 
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
    edited November 2021
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    Hi @paulmitch26 - welcome to the community, & thank you for joining with your good wishes. :)  You certainly have an awful lot to contend with at such a young age. I also have neuropathic pain due to a genetic disorder, but not as widespread as yours, so have just a little understanding.
    I've searched on the forum, & we have had members with HNNP, but the last was a couple of years ago. Still you might like to see their post as a 'brilliant Facebook' group is mentioned. I also saw another mentioned a Facebook group in a blog called HNNP HELP. Here's a link to the post on Scope: https://forum.scope.org.uk/discussion/60121/diagnosed-with-hnpp
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Welcome to the community from me too @paulmitch26 :) How's your weekend been? 

    I'm sorry to hear that things are difficult for you at the moment, and that you're feeling a bit isolated. 

    I think joining the community is a great step to have taken, and I hope that you'll be able to chat with some likeminded people. Although we might not have many members who live with HNPP (though I hope someone else with the condition sees this post!), lots of our members will be able to relate to some of the things you've mentioned, including social isolation, difficulties dating, and adjusting to life with an impairment as a younger person. 

    You're welcome to take a look around the community and get stuck in whenever you feel ready to. Here are a few places to start:
    In terms of socialising, have you tried joining any online social groups or activities? These are sometimes held over video call, and can be a good way to get back into chatting to other people socially. 

    You could also have a look online to see if there are any in-person events or groups that'd be accessible to you. Do you have any particular hobbies or interests, or anything you've always wanted to try? 

    Dating can be difficult at the best of times, but can be especially daunting when you feel as though your confidence is low. Have you considered using any dating apps or websites to chat to new people and potentially meet with them? 
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hi @paulmitch26 and thank you for joining the forum. You'll find it's a very friendly and welcoming community :)

    I would be curious to know more about what interests you, or what hobbies you have as well? Tori has shared some excellent categories for you to browse here, and hopefully you've found our members comments helpful too. 

    I can relate to your issues with balance and walking on tip toes, I have cerebral palsy, so I've always walked that way. The burning sensation sounds like a real pain though!

    You've taken a really positive step sharing how you're feeling with us, it's a sign you have more confidence than you think. Don't hesitate to ask if you have any questions for us, or just want to chat, we're here to help. 
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  • paulmitch26
    paulmitch26 Community member Posts: 27 Courageous
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    Alex_Scope said:
    Hi @paulmitch26 and thank you for joining the forum. You'll find it's a very friendly and welcoming community :)

    I would be curious to know more about what interests you, or what hobbies you have as well? Tori has shared some excellent categories for you to browse here, and hopefully you've found our members comments helpful too. 

    I can relate to your issues with balance and walking on tip toes, I have cerebral palsy, so I've always walked that way. The burning sensation sounds like a real pain though!

    You've taken a really positive step sharing how you're feeling with us, it's a sign you have more confidence than you think. Don't hesitate to ask if you have any questions for us, or just want to chat, we're here to help. 

    thank you very much. i have hobbies but they involve being outdoors. i have air guns, i like fishing and going out walking. im from the asbestos industry and now i cant work at all iv gone from 2,300 a month take home to benefits and it makes me feel sick. i struggle to eat properly, i never fancy food, i waste everything. the sleepless night, the burning down my spine as i try to sit and watch telly, i have to sit with no top on to stop the burning, the neurologist said that its because my brain is telling my nervous system to cause me pain. the symptoms are crazy!! i have to see my surgeon tomorrow morning to talk about cutting my calf tendons to try put my feet back down again.. 

    while at home i have had to chance to read my book collection, listen to music in abundance, play my console and try not to turn into a sour 33 year old man!

    i would not wish this on anyone. 

    thanks all for you're kind words and the most helpfull advice

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  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,251 Pioneering
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    paulmitch26 said:
    Alex_Scope said:
    Hi @paulmitch26 and thank you for joining the forum. You'll find it's a very friendly and welcoming community :)

    I would be curious to know more about what interests you, or what hobbies you have as well? Tori has shared some excellent categories for you to browse here, and hopefully you've found our members comments helpful too. 

    I can relate to your issues with balance and walking on tip toes, I have cerebral palsy, so I've always walked that way. The burning sensation sounds like a real pain though!

    You've taken a really positive step sharing how you're feeling with us, it's a sign you have more confidence than you think. Don't hesitate to ask if you have any questions for us, or just want to chat, we're here to help. 

    thank you very much. i have hobbies but they involve being outdoors. i have air guns, i like fishing and going out walking. im from the asbestos industry and now i cant work at all iv gone from 2,300 a month take home to benefits and it makes me feel sick. i struggle to eat properly, i never fancy food, i waste everything. the sleepless night, the burning down my spine as i try to sit and watch telly, i have to sit with no top on to stop the burning, the neurologist said that its because my brain is telling my nervous system to cause me pain. the symptoms are crazy!! i have to see my surgeon tomorrow morning to talk about cutting my calf tendons to try put my feet back down again.. 

    while at home i have had to chance to read my book collection, listen to music in abundance, play my console and try not to turn into a sour 33 year old man!

    i would not wish this on anyone. 

    thanks all for you're kind words and the most helpfull advice

    Hi @paulmitch26 :) 

    Thanks for getting back to us, it's lovely to hear from you :) 

    It's great that you love to get outdoors, the fresh air always helps and I believe that nature can be so healing. What are your favourite types of walks? This time of the year is always so pretty, with the autumnal colours!

    I can imagine that was difficult to take a cut in your salary. Are you aware of all the benefits that you're entitled to? I'm sorry to hear about your lack of appetite too. Have you spoken to your GP about this? I can relate as I know when I feel stressed, I struggle to eat anything. Your GP might be able to help and give you some advice. 

    I hope all goes well with your surgeon tomorrow. It's great that you're seeing them and they will hopefully put your mind at ease about a lot of things :). Please keep us updated with how it goes!

    Libby
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    Scope

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  • paulmitch26
    paulmitch26 Community member Posts: 27 Courageous
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    well im from sheffield its nice to get out to the dam flask or ladybower but its hard because with walking on tip toes my ankles roll or i trip up, iv had a few close calls with tripping up, i find it hard to lift my legs as my calfs are ruined. i didnt sleep last night i had about a hour. i can never get comfy! where do you like to go and do you have ay disabilities? are you in sunny England?
    the isolation does my head in so i limp down to the abandoned yard and sit down and blast bottles for a hour. i dont shoot animals :)

    thank you im looking forward to seeing the DR tomorrow i want to see what ideas he has, i have 3 hammer toes aswel he will want to see them. 

    when i was a teenager i wanted to be in the army but the solider at the office said because im deaf in my right ear that would have been amazing.

    tell me a bit about yourself :)


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  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,251 Pioneering
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    paulmitch26 said:
    well im from sheffield its nice to get out to the dam flask or ladybower but its hard because with walking on tip toes my ankles roll or i trip up, iv had a few close calls with tripping up, i find it hard to lift my legs as my calfs are ruined. i didnt sleep last night i had about a hour. i can never get comfy! where do you like to go and do you have ay disabilities? are you in sunny England?
    the isolation does my head in so i limp down to the abandoned yard and sit down and blast bottles for a hour. i dont shoot animals :)

    thank you im looking forward to seeing the DR tomorrow i want to see what ideas he has, i have 3 hammer toes aswel he will want to see them. 

    when i was a teenager i wanted to be in the army but the solider at the office said because im deaf in my right ear that would have been amazing.

    tell me a bit about yourself :)


    Hi @paulmitch26 :)       

    Sheffield is a lovely place and so close to the Peak District. It's such a nice part of the UK. I can imagine that's difficult for you when walking on your tip toes. Do you have any walking aids to help you? 

    I'm sorry to hear that you didn't sleep well the other evening, I hope last night was better for you! I'm currently in the North West of England and I love it here. I try and visit the Lake District and North Wales as often as I can :) I have multiple chronic illnesses, one being endometriosis and the other postural orthostatic tachycardia syndrome (PoTs). So I also struggle to stand up for long periods of time without feeling dizzy and fatigued. However, I've got to a point where I can manage my symptoms well enough to live a relatively normal life :) 

    How did your doctors appointment go? I hope it went well and that they were supportive for you. 

    Libby
    Online Community Information Coordinator
    Scope

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  • paulmitch26
    paulmitch26 Community member Posts: 27 Courageous
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    @Libby_Scope

    i am trying not to use walking aids although i do need myself a walking stick to try take pressure off my feet.
    im not supposed to be putting pressure on my hands tho as the HNPP will cause my hands to go numb for a week or 2 so i tend to just plod along. 
    the surgeon yesterday said he can help me he wants to make an incision down he outside of my calfs, 3 cuts above the ankles tendon and then cuts underfoot so release them muscles, this will be on both legs..

    TBH the whole thing is confusing me so i act like i know what the score is but in reality i have a disease i know little about but life is life and we have to get on with it!!

    have a blinding weekend libby
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  • lee1971
    lee1971 Community member Posts: 6 Connected
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    Hi Paul. I have hnpp .I have all your symptoms.  If want to talk  I'm here .
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