Member Neuropathy Journey Stories: What's Yours?

Good evening @jesfactsmon, So.....you know, I am sure, that the greatest precursors for neuropathy are diabetes and chemotherapy. Everything else is labeled "idiopathic" and that is the category where I ended up. Knowing very little about nerves except how much pain their lack of functioning can cause, I started thinking about all of the injuries to my body from the time I was about twelve and had a severe break in my ankle from twirling too fast on roller skates. There have been 13 other surgical repairs to my body from falling off horses, diving too shallow, falling over a sprinkler with a crash, and including the last fall down the mountain which then introduced me to cervical fusions. I just gotta believe that somehow we pay a price with structural injuries. No matter how hard the clinicians try it is just not possible to repair to be just as good as you were before. And then along comes aging, with all the aches and pains.

And there you have it.....lifestyle choices that are riskily undertaken by someone with less skill than what is required to stay all in one piece. That's my story and I have to stick to it to explain all of the neuropathy symptoms that I now tackle with patience and perseverance.

May you be healthy and content.
Chris

Good evening @jesfactsmon, So.....you know, I am sure, that the greatest precursors for neuropathy are diabetes and chemotherapy. Everything else is labeled "idiopathic" and that is the category where I ended up. Knowing very little about nerves except how much pain their lack of functioning can cause, I started thinking about all of the injuries to my body from the time I was about twelve and had a severe break in my ankle from twirling too fast on roller skates. There have been 13 other surgical repairs to my body from falling off horses, diving too shallow, falling over a sprinkler with a crash, and including the last fall down the mountain which then introduced me to cervical fusions. I just gotta believe that somehow we pay a price with structural injuries. No matter how hard the clinicians try it is just not possible to repair to be just as good as you were before. And then along comes aging, with all the aches and pains.

And there you have it.....lifestyle choices that are riskily undertaken by someone with less skill than what is required to stay all in one piece. That's my story and I have to stick to it to explain all of the neuropathy symptoms that I now tackle with patience and perseverance.

May you be healthy and content.
Chris

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.
Jeff

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
https://smile.amazon.com/gp/customer-reviews/R22GGW9IZXH7X9/ref=cm_cr_getr_d_rvw_ttl?ie=UTF8&ASIN=B071NWDQQ7

In the spring of 2015, I went to the doctor for a sinus infection and mentioned that my feet get warm at night. The doctor ignored my sinus infection and used a tuning fork to check my feet. The doctor said I most likely had peripheral neuropathy and to see a neurologist. Before my neurologist appoint my feet started hurting in the evenings and I was taking hydrocodone for the pain. The neurologist did a biopsy and confirmed I had small fiber peripheral neuropathy in both feet. He said there was no cure, it would only get worse and that it would not kill me. My uncle, brother and sister all had peripheral neuropathy. For treatment I was on Gabapentin 900mg three times a day and it did nothing for the pain. They tried several other medications along with pain creams and none of them work on me. Gabapentin works great for my brother. The only thing that helps me is pain pills. I take Methadone HCL 10mg three times a day. If the pain gets bad, I wear cotton socks soaked in cold water for immediate relief. Exercise and a low carb diet also help with the pain.

The neurologist was correct, the pain has only gotten worse over the years. It hurts to stand or walk for more than 30 seconds. The longer I am on my feet the worse the pain gets. I must ride a scooter to shop. It took a couple of years of depression and counseling for me to be comfortable riding a scooter in public. It doesn’t’ bother me to ride it know. I had to by a portable scooter since only a few stores provide them.

I have had insulin resistance since ~2011. I worked out regularly for years and I am only a few pounds overweight.

My current pain management doctor is going to try installing neuro stimulators on both my feet. He did some tests and believes that will help with the ~50% of the pain.

This is my store and I’m sticking to it.

In the spring of 2015, I went to the doctor for a sinus infection and mentioned that my feet get warm at night. The doctor ignored my sinus infection and used a tuning fork to check my feet. The doctor said I most likely had peripheral neuropathy and to see a neurologist. Before my neurologist appoint my feet started hurting in the evenings and I was taking hydrocodone for the pain. The neurologist did a biopsy and confirmed I had small fiber peripheral neuropathy in both feet. He said there was no cure, it would only get worse and that it would not kill me. My uncle, brother and sister all had peripheral neuropathy. For treatment I was on Gabapentin 900mg three times a day and it did nothing for the pain. They tried several other medications along with pain creams and none of them work on me. Gabapentin works great for my brother. The only thing that helps me is pain pills. I take Methadone HCL 10mg three times a day. If the pain gets bad, I wear cotton socks soaked in cold water for immediate relief. Exercise and a low carb diet also help with the pain.

The neurologist was correct, the pain has only gotten worse over the years. It hurts to stand or walk for more than 30 seconds. The longer I am on my feet the worse the pain gets. I must ride a scooter to shop. It took a couple of years of depression and counseling for me to be comfortable riding a scooter in public. It doesn’t’ bother me to ride it know. I had to by a portable scooter since only a few stores provide them.

I have had insulin resistance since ~2011. I worked out regularly for years and I am only a few pounds overweight.

My current pain management doctor is going to try installing neuro stimulators on both my feet. He did some tests and believes that will help with the ~50% of the pain.

This is my store and I’m sticking to it.

As if my story wasn't long enough...I wish to add, for anyone who may be in early stages of neuropathy troubleshooting.

I had a negative EMG/Nerve Conduction Study in 2017 and not diagnosed with SFN until 2019. As I learned that Small Fiber Neuropathy is NOT shown in this test, only Large Fiber Neuropathy, I wondered why noone thought to line me up with a skin biopsy earlier to rule out SFN, given my symptoms of nerve dysfunction and not proving Large Fiber through the test.

In retrospect, I do understand that SFN is still very unknown and misunderstood. I will take some of the blame (it's not all on Drs) for not pushing and learning enough during that time. Such foreign territory, especially when you are overwhelmed by pain.

in reply to rwinney, I have the same frustration. I have all the symptoms of sfn and one doctor said that is what it is, but no one seems to feel I should have the skin biopsy. Who did it for you? I also have 100% of the symptoms of polymyalgia rheumatica, but still don't know who to take care of me. My primary doctor is sending me to a rheumatologist in early June, but I went to one two years ago and she told me she didn't know what to do for me except to prescribe Lyrica which put into the ER. My question: is this the right specialist to see, i.e., a rheumatologist?