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John, Volunteer Mentor (@johnbishop)

Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: 2 days ago | Replies (372)

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Hi all
This is my story.
I am 75. Up until about 3 years ago, I was (I thought) remarkably healthy for my age. I was skiing, road biking long distances, hiking, etc.
I was having the usual old guy's problems with urination, and eventually decided to have a procedure done. My urologist ordered a CT scan of my belly, and, to his and my surprise, discovered a large tumor (lymphoma) on my small intestines, and numerous other tumors on both kidneys.
Long story short, the lymphoma was resected, turned out to be very slow growing type. I probably had it for years. The kidney tumors were unrelated, and were determined to be something rare (onchocytoma), and not malignant, so they're still in there.
BTW, I finally had the prostate surgery, which went well, except that I was found to also have prostate cancer, but again, the very slow growing type. All these conditions are simply being watched for development
For years, I had been noticing strange feelings in my feet. They felt like they were sweating, but weren't. This started happening when wearing shoes without socks.
Around the same time as my surgery , the feelings in my feet began to get worse, to the point where I couldn't wear any shoes or socks without experiencing severe burning. Finally, I got what was going on, saw neurologists at UCSF, had the million dollar workup, including skin biopsy, and was diagnosed with small fiber neuropathy of unknown cause.
I've tried almost every medication in the book, and can't honestly say that any have helped much. Currently, I'm on 150 mg of Lyrica at night (I tapered down from 450 mg daily, just to see what happens, and honestly, I can't say for sure). I'm also on Cymbalta. I have tried tramadol (doesn't work for me), gabapentin (as expected, same as Lyrica), low dose Naltrexone (who knows) and various supplements, vitamins, acupuncture, gadgets, the entire catastrophe.
Ironically, with all these diagnoses, the only thing that bothers me is the peripheral neuropathy, which has put the kaboom on half my life.
I'm trying my best to live as much of my life as I can. In particular, I am still able to ride fairly long distances on my bike, which I do whenever I can.
What I tell friends who I suspect may have PN is that they should see a neurologist soon. If they're lucky enough to have a treatable cause, the sooner the better. Also, it is helpful to have an expert do the workup. As we know, the disease is complicated and tricky to diagnose and treat. It's also helpful to understand that with these types of diseases, it's not at all unusual for medical providers to sometimes not act as well as we would like. Some even dread seeing patients with these types of chronic pain problems. So, don't take it personally, or allow it to make you angry. That doesn't help.
I had to quit a very satisfying (although part time) job simply because I couldn't wear shoes and socks. I've also had to quit numerous recreational activities, as noted above.
Regarding social interactions, I have less than before. Some of this is because sometimes, I don't feel well enough to go, or the venue will make me uncomfortable. I was a life long serious traveler. but I hardly travel at all now. Also, I have grown tired of having to explain to people what's wrong with me. I look like a healthy 75 y/o man. People's eyes glaze over, and I feel I'm boring them. Ironically, I often feel better in company when I finally participate, probably because I am distracted from the pain. This has led me to trying to learn how to distract myself.
It's mostly our responsibility to find out what helps. It's almost always different for each person. There are ways to feel better. We have to do the work and experiments to find them.
Hope this helps.

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Replies to "Hi all This is my story. I am 75. Up until about 3 years ago, I..."

Jeff, since you didn't post a reply, I just wanted to see if you read my post to you which I placed over on the other neuropathy discussion regarding your situation and a product called Penetrex. In case you did not, you may want to go over there and read it or at least check out this link and read the review. It might be something you have not tried and perhaps could be of some benefit to you, hopefully. Best regards, Hank

Hi Jeff, many things you said hit home for me. I was recently diagnosed with SFN at UCSF although symptoms started a long time ago. My pain originally started in the pelvis. UCSF thinks I have pudendal nerve entrapment. After many years of pelvic pain, my feet began to hurt, and then my legs and this kept me up all night taking more and more ibuprofen because I didn’t want to take more tramadol and gabapentin. The pain spread to my neck, arms and hands. Horrible deep aching, burning, shooting pain and I feel vibrations in my hands and that is weird. Anyway, I was an athlete and avid gardener. Any activity makes me feel better when doing it but increases pain the next day. I’m also very tired and I’m not as social as I used to be but I agree being with people can distract you from the pain so you have to force yourself to be social. I’m currently taking Lyrica (150 mg in the AM and PM, Tramadol (50 mg 4 x daily), Ibuprofen. My blood tests are normal except a low positive ANA and smooth muscle ab titer. All CT scans are normal. I will be seeing a Rheumatologist and Liver specialist but I doubt anything will be diagnosed except the SFN.

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