- The Foundation For Peripheral Neuropathy - https://www.foundationforpn.org -

Barry’s Story: A Long Journey with Neuropathy

Peripheral Neuropathy has been a part of my life for 18 years!

I first experienced PN when I was taking my son to visit a college in 2001. I had random stabs of nerve pain all over my body. I went to a neurologist who did all of the tests – I even went to Rutgers University who tested me for mercury and other toxins. It was determined that I had elevated levels of mercury (from eating a lot of fish), but that was probably not the cause of my PN. I finally got my mercury levels to normal. However, my pain got worse, particularly in my feet, and I was initially diagnosed with Small Fiber PN. I tried gabapentin and that seemed to help, but I could only tolerate very low dosages. I went to a Psychiatrist to learn how to deal with the pain, but that also didn’t really work. In the fall of 2002, I saw a study which said that patients that have been on Mevacor for 3 1/2 years had a 15% chance of developing neuropathy. I had been on Mevacor for about 3 1/2 years at that point! After seeing a neurologist in Philadelphia I decided to stop the Mevacor. Within a couple of months my neuropathy went into remission. I had pain only when walking for about 3 hours! Then I got off my feet and the pain subsided. I also found that Alpha Lipoic Acid seemed to keep the neuropathy at bay and have been taking it since 2002.

About a year later I developed Reflexive Sympathetic Distrophy (now called Regional Pain Syndrome) in my big left toe. It swelled up and I was in tremendous pain. It was so bad that I developed a limp. I had three epidurals over 9 months and eventually it subsided, although I was left with a limp. I devised a program of walking on uneven surfaces (mostly by hiking) and eventually eliminated the limp.

My PN stayed in remission until February 2017. In December 2016, I had a terrible attack of sciatica in my right leg. When it subsided I noticed that my toes in both feet were starting to get numb and hurt. Again I went through all of the tests and it was determined that I now had Demylinating Sensory Neuropathy of unknown cause. In the last two years I have tried Gabapentin, Lyrica, Tegretol – all with too many side affects to continue. I added 1000 mg of Turmeric to my ALA which seems to help. I tried IVIG, but it made my symptoms worse. I recently tried accupunture, but my skin is too sensitive for the needles. I also apply a combination of menthol (Max Freeze) and Curel to my feet 3 times a day, and I experiment with other topicals – lately Torpicin. I recently developed numbness in my shins, but we think that it is due to radiculopathy rather than PN.

In 2015 I had a heart attack caused by a year long stress event. Since then I have meditated every day – it is the one time of the day when I have absolutely no pain!

I don’t want you to think that I have let PN ruin my life.

Since 2001 I have visited many states, been to Europe three times, walked or hiked 4-5 days a week, had a very successful career as well as taught as an adjunct professor, published over 100 articles, done numerous speaking engagements, and had a full life. Even since 2017 I have hiked in Olympic Park, walked in Nashville, Savannah, Charleston, St. Augustine, and Charlotesville, Va. I have danced at my son’s wedding and walked everywhere with my granddaughter.

While this latest bout has been hard physically and emotionally, I continue to persevere.

I can only walk for about an hour and one-half before I have to rest – not from tiredness, but from pain. Standing is the worst. Although I walk about 15 miles a week it is tough for me to do the kind of trips I like. The best relief comes from getting my feet up with my shoes off – hard to do when you are at a late night affair! Driving long distances is also painful. However, I am not going to give up. I continue to look for relief and hope that someone will find something to help those that have rarer forms of PN.

PN is different for everyone which makes finding a cure very difficult.

There is no one size fits all. There are many times where you will get tired, particularly if you have chronic pain. Even constant numbness is difficult to bear. More importantly, the fear of the future can get you down. If possible we need to practice mindfulness and living in the present, to avoid the depression from PN. Find things to do that don’t cause pain and give yourself a break when the pain becomes too much to bear. Reduce stress in your life and add meditation and exercise. Ask your family and friends to have patience with you – no one can see PN so they don’t know that you have a disability. Don’t be afraid to ask for help – even if you are like me and have always been the “father of the family,” or leader of your groups.

Remember – you are not alone – there are about 20 million of us – so take heart and take each day as it comes.

 

Submitted to the Foundation for Peripheral Neuropathy [1] by Barry from New Jersey.  Every patient with peripheral neuropathy has a story to tell.    To read more real stories from real people, click here. [2]