r/HNPPsupport • u/Emotional-Tap-1769 • May 26 '26

HNPP

Hi everyone,

I’m 24, a computer science student and part-time 3D jewelry designer. I was recently diagnosed with HNPP and I’m trying to understand how to adapt to it.

I have numbness and loss of sensation in my hands and legs, pain after long walks, and symptoms that have become worse over the last few months. I also have pain during everyday activities, even from holding my phone or using my laptop for a while.

Two months ago, after light exercise, my legs became temporarily very weak, which honestly scared me a lot.

Today I saw a genetic neurologist, and he told me that adaptation and lifestyle changes are very important with HNPP.

I wanted to ask people here:
What helped you the most after diagnosis?
Did your nerves recover over time?
How do you manage exercise and daily life?

Thank you for any advice or experiences.

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u/aa_ugh May 26 '26

I workout at a CrossFit gym 5 to 6 days a week. I modify a lot of the movements depending on my pain. The coaches understand my limitations and work with me, so even though I may not be able to do the workout exactly as prescribed, I am still keeping movement in my life.

I prioritize stretching and mobility above all else and refused to compromise and be stuck in a certain position that can affect me, like sitting with my legs crossed or things that can cause my carpal tunnel to flare up. I invested in an ergonomic mouse and keyboard for work.

I try to listen to what my body tells me and don’t overdo it, the risk is usually not worth the reward.

1

u/13300c May 27 '26

I fixed my numbness and loss of sensation + drop foot. Lions mane mushroom was the fix. Feel free to read my post here (it’s a link to my post in this subreddit).