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We want to hear from you: please tell us about your experience of the online community.

hi my name is paul. I have HNPP with tip toe walking

paulmitch26

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

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

chiarieds

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

Tori_Scope

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:

coffee lounge: the home of our casual conversation and games
chronic pain and pain management
dating, sex, and relationships
rare, invisible, and undiagnosed conditions

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?

Alex_Alumni

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.

paulmitch26

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

paulmitch26

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

paulmitch26

@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

lee1971

Hi Paul. I have hnpp .I have all your symptoms. If want to talk I'm here .

alishafridayartist

Hello, I’m Alisha and I’m 32 and I have HNPP. I suffer with chronic pain and fatigue and when I sit even just for a few minutes I get agonising pain in my back and loose feeling in my legs. I’m perfectly fine when lying down or walking but going from sitting to standing my legs are heavy and I cannot move them. Also feeling alone and scared because all of the info I’ve read online reports temporary, mild painless symptoms but I’m in constant pain and unable to move around independently. Here if you want to chat and if you can recommend any useful mobility aids that would be great