Are we kidding ourselves?

No need to be sorry @bigjohnscho. We've all been there, done that and it can be a downer for sure. We just have to keep living the best we can, one day at a time. Hopefully we can rely on each other to get through the tough times and keep moving. Not sure if you have seen this discussion but there are a lot of us that feel the same as you do.

-- Increasingly Difficult to Accept Peripheral Neuropathy:
https://connect.mayoclinic.org/discussion/nor-accepting/
I keep researching and trying to learn as much as I can about new treatments and new research being done. It's one of the reasons I subscribe to the Foundation for Peripheral Neuropathy email news. Here is a page with their patient stories - https://www.foundationforpn.org/patient-stories/. They also have many webinar videos available on their YouTube channel - https://www.youtube.com/@foundationforperipheralneu4122

I know the feeling . I have had neuropathy since 2004 . I have spent 30-40,000.00 of my own money trying to find something that helps me . I had a laminectomy in March 0f 2023 . I get massages every couple of weeks . I have done cold laser , Pemf treatments , acupuncture , . The list keeps going . The only thing that really helps with my pain . Is gabapentin with tramadol . I also put a thc salve and magnesium lotion on my feet at night . I take Alpha lipoic acid R , magnesium malate , fish oil, vitamin D . It can get really tough some days . I wish all of the people on this site the best in finding something that helps with the pain . Last but not least. I make my own thc tinctures that I use at night also . Don't ever quit or give in or give up . Keep your head up and keep moving forward .

@bigjohnscho I think every one of us dealing with peripheral neuropathy all start out the same. OK, what do I have, why and how do I get rid of this. Makes sense because we have meds and treatments available for many other diseases and illness that comes down the road. Not all but many. With PN, in some cases, we have available meds and supplements that might help to cope with PN but in very few cases, offer a cure. In 2020, after going to Mayo in MN, I realized there was no cure for my PN and looking back, that is when I decided to look at this from a different point of view. I know what I have, don't know why I have it and won't get rid of it. So, I decided to learn as much as I could about PN and not figure out the why. John @johnbishop brought up excellent points about learning and keeping up to date on continued research. I've also found the Foundation to be an excellent source of information. Keep moving the best you can and be well. Ed

You describe how so many of us go through coming to terms with our PN. It’s like the process of mourning the loss of someone (in our case, something). It seems like a lot of different phases we go through: Denial, Sadness, Questioning, Wanting Answers, Anger at not getting help/ answers/ understanding/ or cure, often aimed at our medical folks. Sadness (maybe depression) for the activities we can no longer do and the lifestyles we no longer have. Activities once shared with family and friends change.

Eventually we exhaust ourselves and the focus becomes on learning how to live most optimally with this in a positive way. From PT, vitamins, medicines, rest & relaxation ideas, and tools to help us live safely and lessen risks of regression.

This forum has helped me navigate through all of that. There are a lot of folks here who have so much experience with this and give us ideas on what to try to help us learn about what might be going on and how we might try to adapt. We also have great mentors and administrators. I don’t think we ever shake the frustration of not knowing the how or exactly the what, and that we’re not offered cures instead of bandaids, and we always keep some hope. I will say that I feel better now that my mental focus is more positive in seeing what I can do to make life easiest and happiest with this unfortunate PN.

I agreed, you have to deal with it, we have no other choice. They talk down pain meds but if it wasn’t for mine I would never have a normal day!
If there is anything that’s going to help us with PN, I’m sure you will find it on a website like this.
Thanks for all the comments, we have to keep trying!

So True .Very insightful description of dealing with PN.

Neuropathy, like all illnesses, created a money-making grab on social media with fake cures, fake pain remedies and other solutions. To doctors we are lab rats. To others we are suckers because we are vulnerable. Everyone is different. What works for one might not work for another. I don't think there is a cure but for me reducing the pain is my solution. Whatever it takes!!!

Anyone get cortisone shots?

Thanks for all the responses. Like all of you I have done everything I know to root cause the PN. May well be time to accept, deal with it and move on from trying to find the needle in the haystack. Looking for the needle may well be a lost cause and time to live on. For what it is worth I have found Gabapentin and a device Tens like to be a real benefit to me. The electrical pulse really soothes the pain in my feet for hours. Only thing I have found after countless Dr searches and visit. I have seen many types of Drs from surgeons to nerve specialist big and small organizations.
Bottom line the Dr’s have no idea what is going on. They literally say this, “no idea”.

So we have each other. Better than the help we get from the Medical World. Not suggesting this is anyone’s fault. Time to move forward for me, one slower step at a time.

Yes, but this is tricky. I got them in my hips for years, and they worked great, until they didn’t. A PT pointed out that the hip pain was caused by chronic glute tension, which was relieved by dry needling. In other words, the cortisone shots were just a bandaid. Right now I have a heat pack and red light therapy on my neck and shoulders, trying to relieve chronic headaches and dizziness. All information given to me by skilled physical therapists.