Neuropathy: What works and what are scams?

It’s a real shame that these hucksters will take advantage of people with no thought of how it will affect them.

It is interesting to see that our suffering companions are as numerous as the remedies we have tried. One thing is an undeniable truth, we are all as different as the remedies tried. As one of you pointed out, what works for one does not for others. We have war stories, some time similar, and sometimes so different that it makes you ponder whether there will ever be a cure, and if so, will it be within our life time or not. I wish it could, just as some cancers are curable when it was once thought it was a death sentence. I can only keep on trucking and trying whatever might work hoping it would help me with this malady. Keep on trying you all and be blessed in your journey. Anton

I can empathize with you and if it wasn’t for this community I don’t know what I would do. I confided in my best friend that I was profoundly depressed because of my PN pain and some evenings I will cry uncontrollably. She said that wasn’t normal to feel this depressed about my condition because “It’s nothing life threatening”, says the person who has never had PN. She also berated me for trying a topical THC/CBD product whom my doctors have had no trouble with me using. I feel like I’m on this island, adrift from the rest of humanity. The medical facility I went to recently had me set to meet virtually with a pain psychologist and they called a couple of days ago to cancel my appointment on the 19th of this month to three weeks later so addressing my mental health will have to wait a while longer. Your last two sentences brought me to tears. I pray every day not just for myself but for all of us that they can find a cure or universally effective treatment, very soon. I am so thankful for this forum where we can share ideas and our feelings with those who walk this painful road which others cannot understand.

Right On Anton, Thank you for your realistic and heartfelt sharing.

I have it in my feet I had chemo and radiation I am wondering if the course it.

Yeah, people that has not experience the suffering, yes the suffering caused by PN can be very inconsiderate in their comments to those of us that are dealing with it. You are not alone, just live your life the best you can and I am sure that there are many shoulders to cry on in this group, that will encourage and help you deal with this terrible illness. But your friend’s response goes to show the reason why there is a lack of research dedicated to finding a cure for our benefit. Why dedicate time and money to try to find a cure to as you indicated by her response “it is nothing life threatening”? Is the PN foundation the entity that carries the banner for us or ? Can someone in this large group of fellow sufferers have an idea?

Thank you for your kind and empathetic reply. It was comforting. There are so many people who have PN that I don’t understand why there isn’t more attention devoted to it. There is a plethora of OTC remedies - which often fall short - so I would think that some company would see the lucrative value in developing a cure or more effective treatment. I was recently at a major medical center in my state, and the only option I was given was doubling the dose of my Gabapentin. Even on my current dose I am having trouble tolerating the side effects; however, I need better pain control and was hoping that at the very least, they could add something to my current treatment regimen rather than just more of the same. I showed him the four pages of alternative treatments from the PN Foundation site, and after glancing at it briefly, he said that none of it worked. Imagine my disappointment after putting so many hopes on this appointment that I waited such a long time for. Thank God for all of you.

It is easy for those living in their tiny bubble of not having lived with pain to tell us that we are over-reacting. Or it's all in our head - no it's in my feet and legs! It is only a matter of time until life slaps them upside the head as it laughs and laughs. Then their minute will feel like a month....

@antonintampfl2009 - Your comment above relating to dedicating time and money for a cure for those of us with PN because it is not life threatening ... you are 100% correct. And, for several years I've thought the same way and still do. Let's go back to 2020, we all remember covid and the loss of lives. Within a year, a vaccine was available by several pharmaceutical companies. Yet, with PN, most people think....oh, isn't that just numbness in the feet? If they only knew, it goes well beyond that. We have around 25 million people with some degree of PN. The general perception is people can live with that and fortunately, we do. Some degree of attention is given to PN when people like Eric Clapton announce he has PN. In my opinion, big pharm companies won't throw money into research for PN...after all, it's just numbness in the feet. And, even if they could develop a magic pill, would insurance companies be willing to pay the price for this newly found med? So, for now, all we can do is slow progression, take pain meds, etc. until pharm companies realize that perhaps there is a market (a/k/a make money) to develop something for those suffering from PN. For now, fingers crossed! Ed

Welcome @stefanie4710, I have found it easier to ignore those types of people. It definitely helps when you have a circle of friends that empathizes and understands or can relate. I don't wish any of my health problems on anyone else. One of the best lines I have heard about neuropathy came from an 80 year old neurologist at a meeting of the now gone Minnesota Neuropathy Association. He said if you live long enough you will get neuropathy because nerves eventually die like any other cells in our body - paraphrased from my old man memory 🙂.

What helps you get through the day?