Neuropathy: What works and what are scams?

A friend of mine fell for that, invested months of time and over 7,000.00. I said if it works it’s worth it. Unfortunately he just loss money. Every time I see their commercial I cringe thinking of all those innocent sufferers that will just lose money.

Hi iam a late 70s guy pn for 5 years like many iv tried everything creams tabs eg amptidripline b12 nitric oxide r ala I do rem once a co I deal with nerve renew USA based one time saying although we all know its not supposed 2 be curable some things work for some and not for all about 3 years ago I bought a pair of those neumatic leg boots about160 us dollars now you can buy the same ones for 70 2 80 sterling I read that I should use them twice a day once say lunch time and once fir about 40 mins b 4 bed well it's working I know get 6 2 7 hours sleep due to better blood circulation now the pn is still there in my case burning but I sleep better enabling me t cope with the next day more easily I recon iv spent 3000 sterling over 6 years dictors nuerolisists creams tabs etc this works for me no need to spend 1000 pounds for high end neumatic boots they are for fit young athletes if you can sleep more without getting up every 2 hours to put on ice socks it's worth it I recon 80 dollars to help your blood circulation is worth it I also walk 1 hour a say yes ut burns and I swim 30 mins a day blood circulation is everything weather u have burning pain or numbness james from ireland

I should have said I used the phenomatic 6 times and gave up big mistake I have been advised twice a day 30 mins 2 40 mins especially b 4 bed

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.