HNPP: My story by Ms J, Eu.

I was diagnosed with hnpp back in 2005, after many years of going back and forth to the doctors (so many ive lost count), been accused of lying, and almost giving up, finally a doctor, recognized the symptoms and sent me for the test, my broken back, had always been a bit of a red herring when it came to my nerve pain, and doctors, failed to understand why, I was still in pain, even after 2 surgeries.

In 2014, I was diagnosed with painful peripheral neuropathy, finally an explanation to why, I was suffering so much with burning sensations, and nerve pain, from the top of my head down to my toes, something that I live with on a daily basis.

Over the years, I have had many hospital visits, through loss of power and feeling in my legs, to a migraine that blinded me, and closed my throat, I have days where im so exhausted from being in pain, or just that general feeling my body is fighting against me, and stopping me from doing what I love.

This disease is crippling, exhausting and frustrating, however! It doesn’t rule my life. Yes, I need to make sure, I have comfy seats, and not sit on my ass for too long, I have to take care when using a computer and traveling, the upside is, I always get a seat in a bar. But I control it, I wont let it control me, I actually surf 6 times a year, not just little waves on the beach, but have gone out to pipeline in Hawaii, steamers in Santa Cruz. I climb, yes rock climb! Ok, I am not allowed to lead climb, but I do go up, I fight with the numb fingers, and take the consequences of 6 hours surfing, or paddle boarding, mountain biking, all of which I do on a daily, weekly basis. I live my life, I don’t let it stop me, yes at the end of the day, my body is tired, and my nerves are screaming, but I am alive, and I feel alive, I don’t stop living, just because I have a progressive disease, in-fact it makes me more determined to live to the fullest, as one day I might not be-able to, and too be honest, if I complained or felt sorry for myself, every time I suffered as a result, then I would wind up very lonely, very bitter, and I’ve let hnpp win, and that for me, will never happen.

Life does go on, yes it sucks, it really does, but mind over matter, has more positive effects than the, I feel sorry for my self scenario, I’m 37, and I wont change the way I live, because im supposed to, anyway, no better way to forgive your body, after an epic day surfing.

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About leaf27

Just a regular Clodhopper

Posted on August 10, 2014, in Case Histories and tagged , , . Bookmark the permalink. 2 Comments.

  1. Hi, I have just visited my consultant who tells me HNPP does not cause pain! I have terrible muscle cramps legs/hands/feet and burning sensations in my legs. My head, the left hand- side has been numb now for over a year, and I am losing the sensation in my lower stomach and toes not to mention numbness in my hands and toes so bad I cannot feel anything when cutting my toes nails. Get fatigued and breathless too at times. Consultant appears disinterested and offers no advice at all on how to manage HNPP. Just tells me to come back in a year. Marie.

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    • Hi Marie;
      I was diagnosed with HNPP as well and have all of the same symptoms as you. I have found that I can often control most of the cramping in my hands, legs and feet by controlling my caffeine intake and by avoiding dehydration and long stretches on my feet without rest. Not the easiest thing for me being a nurse working 12 hr night shifts! Another thing that seems to have helped with the burning pain is switching to a gluten free diet. I know it sounds strange, but I read this book, actually it was just a book summary that I downloaded from Amazon called ‘Grain Brain’ (summary), it was $3. I only rarely have the intense burning in my toes and wrists anymore since starting the diet. It may be worth a try.

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