Patient Stories


Faces of PN: The Power of Education

Susan from Oregon shares her PN story with us:

Dear Friends and FPN Family,

I first became acquainted with neuropathy when my late husband was diagnosed about 10 years ago. Much to my regret, I never took the time to learn about this progressive disease. Quite possibly I might have recognized my own symptoms of PN when it lurked in my body in 2016.

In July 2016, I was diagnosed with an incurable virus – a modern-day form of leprosy. Within days I began experiencing a multitude of symptoms throughout my body, ranging from dry eyes, nerve pain running down my left leg, and slight changes swallowing. Then new symptoms started emerging with regularity: problems with my vision, my toes hurt, and my arms would go numb.

The first doctor that examined me thought I might have an autoimmune disease, and he recommended I start an anti-inflammatory diet. He encouraged me to do further testing; but unfortunately I did not, because I lacked medical insurance.

Fast forward three months, I still didn’t know what was wrong with me. My swallowing difficulties became more severe. I lost my appetite, and I had a lot of pain in my stomach and sternum. My weight was dropping rapidly, and my jaw was moving uncontrollably, clanking my teeth. My feet felt stiff and my gait was changing. The joints in my fingers and toes hurt. I also became sensitive to noise and touch; my senses became easily over stimulated.

Once I obtained the golden ticket of health insurance, I pushed my doctor to scope me. The results shocked him: he diagnosed me with H. pylori, severe chronic gastritis, and celiac. I finally had answers to my health problems. Later, I would discover this was only partially true. I still continued to have unexplained pain that didn’t fit the new diagnoses. My doctor referred me out of the state of Alaska, and I began care at OHSU. Within five months, I learned I also had fibromyalgia and peripheral neuropathy.

After further testing, I was told my neuropathy was idiopathic, and after a tissue biopsy of my ankle and thigh, I was informed that the results showed substantial nerve damage. I was shocked upon hearing this. So many questions flooded my mind, but mostly panic of my unknown future, which didn’t seem promising at the time, as this I was told is a progressive disease.

For my PN, I started taking gabapentin and duloxetine. Even though I found some symptom relief, both drugs caused new side effects – I had difficulty sleeping, extreme dry eyes, dry mouth, headaches, and I felt somewhat drugged. On my own, I tried heating pads, ice and over-the-counter pain patches, which gave me minimal relief.

I kept educating myself on eating more nutritious foods and the powerful benefits of exercise. I started swimming and walking regularly, and started to feel better overall with my mood and energy level. I then decided I wanted to experience my pain without drugs to see if I could manage and stopped taking them cold turkey. (I don’t recommend this to anyone.) I was amazed that the pain was almost the same for me as it was on medication. Soon thereafter, I discovered the supplement, lipoic acid, and it took all of my pain away almost immediately for three weeks (but it gave me severe stomachaches), and then the pain returned. I then began drinking CoQ10 for the stated health benefits. Within seven days, my pain was lessened by at least 70 percent. I was shocked because the label didn’t state it could help with PN, so I started Googling to search for any link, and there it was. I couldn’t believe I stumbled on this natural benefit to relieve most of my pain. This has worked for me better than anything else.

My symptoms with Fibro are about 80 percent better and PN is 60 to 70 percent better. I believe I have achieved these results through better nutrition, exercise, not taking pharma meds, calming my body down through music, meditation and prayer.

I refuse to give up and continue to explore natural remedies to help me cope with and manage all of my chronic conditions. Truthfully, I’ve learned so much about myself in the past four years, learning to trust my gut instinct, and listen to my body when it speaks to me. In many ways, I believe I’m in better health now. I’ve cleaned up my diet, healed my gut, eat very little sugar, no fructose corn syrup, drink minimal decaf coffee (used to drink pots full); I drink kombucha instead and take vitamins. My pain is now manageable, and I believe God gave me more than I could handle, so I have to rely on him to heal me in his time, mentally, physically, and spiritually. I’m so very grateful God has restored my life, and I have one worth living today!

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