1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

arcuri24 | @arcuri24 | 12 hours ago

So it involves trying to transport yourself to another place. Not easy to do. I guess managing stress is a big part of dealing with this. I am not on a farm--I live in uberstressed NYC.

REPLY
arcuri24 | @arcuri24 | 12 hours ago
In reply to @cap5457 "Hello Laura. So very sorry for frustration. Other than those of us in this elite group..." + (show)
@cap5457

Hello Laura.
So very sorry for frustration. Other than those of us in this elite group of PN sufferers, it’s hard to explain the incredible frustration & pain we have. My experience is very similar as yours. To many doctors to count. My PCP & several podiatrists all pointed to other root causes. Finally found a very sharp & knowledgeable neurologist this past August.
She identified the cause. Idiopathic large fiber poly PN. FINALLY HAVE A REAL DIAGNOSIS.

Jump to this post

Thanks for sharing with me. I have more emotional pain than physical. I have lost weight so my PCP is doing all kinds of tests. I think I need to find a neurologist who will be more engaged with me than my current one. I did see my podiatrist yesterday but he did not have any other suggestion than finding a good neurologist. I try to keep exercising and refining my food intake. Cut out alot of sugary stuff. I am not diabetic but sugar can cause inflammation.

REPLY
arcuri24 | @arcuri24 | 9 hours ago
In reply to @cap5457 "Hello Laura. So very sorry for frustration. Other than those of us in this elite group..." + (show)
@cap5457

Hello Laura.
So very sorry for frustration. Other than those of us in this elite group of PN sufferers, it’s hard to explain the incredible frustration & pain we have. My experience is very similar as yours. To many doctors to count. My PCP & several podiatrists all pointed to other root causes. Finally found a very sharp & knowledgeable neurologist this past August.
She identified the cause. Idiopathic large fiber poly PN. FINALLY HAVE A REAL DIAGNOSIS.

Jump to this post

Hi cap5457 I am glad you were able to get a diagnosis. There is alot of anxiety with test taking and not being able to find out what is wrong. Some doctors also do not have good people-skills. I will be going for more tests this week.

REPLY
heisenberg34 | @heisenberg34 | 9 hours ago
In reply to @andyjustin "Well, I’ve said my story all over the place. With a lot of different groups here..." + (show)
@andyjustin

Well, I’ve said my story all over the place. With a lot of different groups here in these chat rooms 2 1/2 years ago I didn’t know what neuropathy was, now I must say sadly I am well-versed in all of its complications. I learned about medicines. I’ve never heard of therapies than some cases. and in most cases, don’t do a damn thing. Hopefully, I have help open up discussions on the psychological effects of neuropathy, which I truly believe have an impact a very large impact on the physical aspects of this disease. We are all on a path, though different in many ways, the same, and it is my hope that someday there will be more answers than questions. I think I’m gonna take a break for a while cause real realistically not many of these post lift my spirits all the best I’ll be back.

Jump to this post

Ain't it the truth. Like you, I had never heard of neuropathy until about eight months ago. I had severe pain in my lower back and buttocks from a ski fall in 2016. I got the pain under decent control until 2021 when it came back with a vengeance, sort of out of the blue. We moved to Delaware in 2023. Had to get new docs for Pain Management and PCP. Had a pain pump implanted after an excellent trial. It did not provide any relief. In July of 2024 I had an EMG that showed neuropathy, aka nerve pain. It wasn't until about November of 2024 that the more insidious symptoms began to show up... pain and tingling in extremities. Now, even walking is problematic. I never felt "old" (I'm 77) until these symptoms showed up. Yes. the pain, tingling and whatever is happening at the moment occupies just about every waking moment of my day. We can only hope and pray(seriously, PRAY) that medicine will be able to find some answers to this plague called neuropathy.

REPLY
suebullmc | @suebullmc | 7 hours ago
In reply to @andyjustin "Well, I’ve said my story all over the place. With a lot of different groups here..." + (show)
@andyjustin

Well, I’ve said my story all over the place. With a lot of different groups here in these chat rooms 2 1/2 years ago I didn’t know what neuropathy was, now I must say sadly I am well-versed in all of its complications. I learned about medicines. I’ve never heard of therapies than some cases. and in most cases, don’t do a damn thing. Hopefully, I have help open up discussions on the psychological effects of neuropathy, which I truly believe have an impact a very large impact on the physical aspects of this disease. We are all on a path, though different in many ways, the same, and it is my hope that someday there will be more answers than questions. I think I’m gonna take a break for a while cause real realistically not many of these post lift my spirits all the best I’ll be back.

Jump to this post

My husband has PAD, Parkinson's, arthritis, and diabetes so we are always looking for anything to help. He uses my Revitive for about 30 minutes 2 or 3 times a week. Recently, I tried frankencense oil and helichrysum oil in a roller bottle using coldpressed castor oil as the carrier oil. This has given him relief for the pain and burning on the bottom of his feet. The helichrysum oil also is helping his very dry forearm skin. I used the castor oil a week after we married to help with pain and healing when the bypass in his left leg collapsed and he had to have it "rotor-rooted" (my 'medical term') to save his foot. I recalled my granny putting castor oil on cheesecloth and placing it on my belly when I had a bellyache. Worked for me and it worked for him. Our faith is strong and we rejoice inevery little victory.
Hope some of this helps.

REPLY
arcuri24 | @arcuri24 | 4 hours ago
In reply to @cap5457 "Hello Laura. So very sorry for frustration. Other than those of us in this elite group..." + (show)
@cap5457

Hello Laura.
So very sorry for frustration. Other than those of us in this elite group of PN sufferers, it’s hard to explain the incredible frustration & pain we have. My experience is very similar as yours. To many doctors to count. My PCP & several podiatrists all pointed to other root causes. Finally found a very sharp & knowledgeable neurologist this past August.
She identified the cause. Idiopathic large fiber poly PN. FINALLY HAVE A REAL DIAGNOSIS.

Jump to this post

Thanks for your warm welcome. It is very difficult to get hold of a neurologist who will engage more fully. I will say today seems to be a better day. I even did some upper body weight training as I want to gain some pounds. I am also focused on the foods I eat. Everything makes a difference.

REPLY
scain | @scain | 1 hour ago

Probably in 10 years they will have better treatments for PN. I doubt that there is much research going on now and that results in the doctors that we see being almost clueless about the diagnosis and treatment. It would be helpful if they actually admitted that to us when we visit them. I have always found that the truth is more helpful to me than no answers or just shuffling us along to more tests.

REPLY
jamessaxo | @jamessaxo | 17 seconds ago
In reply to @cap5457 "Hello to all of you. I just read all your posts. We’re all on a journey..." + (show)
@cap5457

Hello to all of you. I just read all your posts. We’re all on a journey that we didn’t plan ahead for. For me it’s been about 10 yrs or more. Stared off with some pain issues in my left foot. Podiatrist said it was a neuroma. Tried injections & orthotics. No Help. Tried a different Podiatrist. Same results.
During all of this I’ve studied, read & investigated everything available. Pain increased. Started on Lyrica. Worked to some degree.
I purchased many different types of socks & footwear tinking I just had to get the right ones. Pain increased & was now effecting my right foot as well.
I’ve always been active in many fitness related activities.
But now I felt like I was benched for the rest of the game. Pain levels increased along with other symptoms.
Finally this past August I saw a very sharp & knowledgeable Neurologist. She took into account all of my experiences & completed an extensive examination. Including a full assessment of multiple blood tests. Prescribed an EMG Test. Finally received a diagnosis. Large Fiber Poly Motor Sensor PN. Started taking Gabapentine. Noted some improvements.
It’s been a long journey up to now. But at least I now know what I’m up against. I’m not a quitter & in for the fight.

Jump to this post

I got rid of my trigeminal neuralgia by taking plenty of METHYLCOBALAMIN, that's the most easily absorbed form of B12. Raise dose until urine turns green. It will cause nerves to recoat themselves. Myelin. But alcohol stops B12 . You might want to try a teaspoon morning and night , turmeric. Stops nerve pain. Go for it.
Go for it.

REPLY
View MoreView Less
Please sign in or register to post a reply.