My name is Dave and I have had Peripheral Neuropathy for over twelve years. I retired as an Electrical Engineer back in April 2017. I am 63 years old.
Back in November 2006 my wife and I traveled to Spain to see our daughter who was studying abroad. I was 50 years old and this was the first time I was going to Europe. I was very excited. I was healthy and didn’t have any major medical problems. During our stay in Spain I discovered that one of my legs was feeling strange after taking a long walk.
The strange feeling went away and didn’t come back till spring. My wife and I went to Florida at Easter time and I noticed that my feet were feeling strange. We were driving down the road and I told my wife that I needed new shoes since my feet were burning.
Several months later my feet were burning constantly. I had shooting electrical shocks in my feet and my lower legs. I felt like I was walking on pins and needles. I went to my primary care doctor and he referred me to a neurologist. Several weeks later I visited the neurologist and he told me that I have neuropathy.
I started a new job and found it difficult to balance work with my medical treatments. Upon the referral of my neurologist I went to the Mayo Clinic in Rochester, Minnesota. I spent an entire week of my vacation at Mayo Clinic. I was getting very depressed. This was May 2008.
After extensive testing, the Mayo Clinic doctors concluded that I most likely didn’t have any underlining cancer or an autoimmune disorder. I was diagnosed with Idiopathic Peripheral Neuropathy. The Mayo Clinic doctors prescribed the drugs, Tramadol and Nortriptyline. I have been taking Tramadol since my visit to the Mayo Clinic back in 2008. It takes the edge off of my nerve pain. I stopped taking Nortriptyline several years ago due to bad side effects.
Peripheral Neuropathy is challenging. You can either let this disease get the best of you or learn to go on with your life as if you didn’t have PN. It is hard but I have learned to do this.
I have learned to think of the things I can do. Since having PN my wife and I have taken a number of European trips along with several Caribbean cruises. We have traveled to Alaska and twice to Hawaii. All of this travel occurred while having PN. I am looking forward to my next trip.
When traveling I find myself having to take frequent rests. Therefore, the pace of our traveling has slowed, but it hasn’t stopped. I no longer can hike to Machu Picchu but that’s Ok. Instead I have taken my grandchildren on a Disney Cruise. The Disney Cruise was most likely more fun.
Cruise lines offer a number of excursions. My wife and I find the ones that are less physically challenging and short in duration.
I retired back in April 2017 at the age of 61. It was becoming way too difficult to continue working since my pain and tiredness took away from doing my job. Yes, it is possible to work with PN but it was very hard. I worked with PN for ten years. Being retired I can pace my activity level and take naps when I am tired.
I have three beautiful granddaughter that my wife and I watch for a couple days a week. I have gone back to some old hobbies of mine, like ham radio. I socialize with two groups of friends. One group is my morning coffee friends and the other is my tech friends.
One final word of advice for people living with PN, take a look around and you will find others that have it far worse than you.
Submitted to the Foundation for Peripheral Neuropathy by Dave from Wisconsin. Every patient with peripheral neuropathy has a story to tell. To read more real stories from real people, click here.
Hi Dave. I enjoyed reading your story and appreciate you looking at your PN as the glass being half full. I too have PN, although I am fortunate to have no pain. I do, however have extreme drop-foot and balance issues (large fiber nerve PN). But I wear AFOs on both legs which enable me to walk fairly well. We also travel extensively, but like you, I have limits as to how much activity I can do. I found a saying that I try to live by: “Focus on what you can do instead of what you can’t”.
Dean
Enjoyed your story Dave. I was “diagnosed “ with idiopathic neuropathy about 3 years ago. I thought my spinal stenosis at L4-L5 was the problem, but after a skin biopsy that was positive for small fiber neuropathy, the doctors forgot about the stenosis or any other diagnosis. I want to go to Mayo as well , but not if they will only fall back on the drugs I am taking now. I am interested is spinal cord stimulation and anything that would be atypical in treatment. Neurontin (1,800 mg daily) and Cymbalta (60mg daily) are of little benefit. Research in neuropathy seems to be sparse at best. Finding a thought leader that is willing to see just an ordinary person and not a celeb , seems to be difficult as well. I am 67 and not ready to retire but the handwriting is on the wall. Good to luck you and everyone suffering with this malady.
Albert, if you contact us at info@tffpn.org we may be able to recommend a neurologist for you.