Living with Neuropathy - Welcome to the group

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.

@grandmar

@rwinney
I am so sorry you are going through so much.
Please do not lump the pain meds together with alcohol and 'drugs'.
What you are taking is a medicine to help you with an illness.
These are not 'drugs' you use to get high.
Big difference!
I hope that you will be able to find comfort, soon/!
Ronnie (GRANDMAr)

Jump to this post

Thank you for your reassurance. I know, it took me a while to come to terms with acceptance of such drugs for pain relief purposes. Also, understanding it is ok due to circumstance beyond my control.

REPLY
@newzbug

My diagnosis is Generalized Peripheral Neuropathy. I am here because of my neuropathy starting in my feet and moving up my legs. To help my feet, I did some research on sneakers (running shoes) with a wide toe box and added arch support. I have very flat feet. They are orthotic friendly. I currently use Brooks Adrenaline GTS18 in a Women's 11XWide. I love them. Super comfortable, great support. Not too expensive if you are willing to look. I found mine for under 90 dollars. My neuropathy started about 4 years ago after a car accident. I was pretty sure there was nothing they could do for me (based on my own research and reading), but my primary care doctor disagreed with me and recommended a neurologist. Well after she ran blood work and a battery of tests, guess what?! There really is nothing she can do to help me. She can't find a specific cause but recommended extra Vitamin D, and to try some Alpha Lipoic Acid vitamin supplements as there is research to show it can help some people. But according to the nerve conduction test it is also in my arms and legs on BOTH sides. So far, not my torso. But the neurologist will see me every 6months to monitor me. So I take 600 mg of the ALA per day. Can't walk barefoot outside anymore, it's like walking on glass to me. My feet have little feeling in them except occasional pain and burning. I relieve the burning pain by focusing a fan on it at night. Helps a lot. When the burning feels really bad, I soak them in cold water. Feels soooo good. I don't like pain, but I think the numbness is really scary, I can get hurt and not know it till I see the blood or bruise. (And I was put on blood thinners last year for blood clots in my lungs … yikes) Sometimes my feet feel like I am wearing Kleenex boxes on them for shoes. Weird feeling but when they stretch the end of my big toe, feels like it's touching the end of the box. I hope this site will be of some help to me. I just turned 60 and have been having these problems such a short time.

Jump to this post

@newzbug, Good evening and welcome to connect. We do not have medical credentials. Our medical experience is our own lives e.g. encounters with neuropathy and other afflictions. What is your reaction to the diagnosis? You stated in your post that you know there is no "cure" for any type of neuropathy. Nerves age and struggle to send messages to our muscles. Have you begun to create a daily protocol sheet that tracks the times and doses of your medications?

Sometimes the numbness in the feet becomes a hazard not only for staying balanced but also for having enough feeling in your feet to safely drive a vehicle. I have been conscientiously working on those feet for several years and have found that the only thing that works is consistently is Myofascial Release (MFR), a special kind of massage treatment.

Like you, I have most of my pain in my arms, wrists and hands. I just keep working on the pain and its buddy anxiety. When both of them are coming in loud and clear, and the barometric pressure is under 30......I remain pretty sedentary.

Have you found activities that distract you from the pain and keep the anxiety about the pain under control? Would you feel O.K. about sharing what works for you? I hope you have a restful sleep and can respond tomorrow. Chris

REPLY
@wilcy

Hello, so far marijuana isn’t doing anything! Bought 5 different samples!

Jump to this post

@wilcy, It is kind of discouraging when nothing works. Your expectations haven't been met. It does take time. You mentioned 6 different samples. Are you referring to different distribution modalities, vape, pills, topicals, tinctures? Have you found comfort with any of the distribution options? Is the dosage, e.g. 3/1 CBD:THC the right one for you? As someone mentioned on this page....settle in for a journey of experimentation and evaluation. We are here to help and share with you. Have a restful sleep. Chris

REPLY
@artscaping

@newzbug, Good evening and welcome to connect. We do not have medical credentials. Our medical experience is our own lives e.g. encounters with neuropathy and other afflictions. What is your reaction to the diagnosis? You stated in your post that you know there is no "cure" for any type of neuropathy. Nerves age and struggle to send messages to our muscles. Have you begun to create a daily protocol sheet that tracks the times and doses of your medications?

Sometimes the numbness in the feet becomes a hazard not only for staying balanced but also for having enough feeling in your feet to safely drive a vehicle. I have been conscientiously working on those feet for several years and have found that the only thing that works is consistently is Myofascial Release (MFR), a special kind of massage treatment.

Like you, I have most of my pain in my arms, wrists and hands. I just keep working on the pain and its buddy anxiety. When both of them are coming in loud and clear, and the barometric pressure is under 30......I remain pretty sedentary.

Have you found activities that distract you from the pain and keep the anxiety about the pain under control? Would you feel O.K. about sharing what works for you? I hope you have a restful sleep and can respond tomorrow. Chris

Jump to this post

The samples are marijuana! None have done anything while vaping, For some reason, driving really kills my feet! Neuropathy and cramping toes! Roadtrips used to be my hobby! Leaving to see foot doctor! Holler later!

REPLY
@artscaping

@newzbug, Good evening and welcome to connect. We do not have medical credentials. Our medical experience is our own lives e.g. encounters with neuropathy and other afflictions. What is your reaction to the diagnosis? You stated in your post that you know there is no "cure" for any type of neuropathy. Nerves age and struggle to send messages to our muscles. Have you begun to create a daily protocol sheet that tracks the times and doses of your medications?

Sometimes the numbness in the feet becomes a hazard not only for staying balanced but also for having enough feeling in your feet to safely drive a vehicle. I have been conscientiously working on those feet for several years and have found that the only thing that works is consistently is Myofascial Release (MFR), a special kind of massage treatment.

Like you, I have most of my pain in my arms, wrists and hands. I just keep working on the pain and its buddy anxiety. When both of them are coming in loud and clear, and the barometric pressure is under 30......I remain pretty sedentary.

Have you found activities that distract you from the pain and keep the anxiety about the pain under control? Would you feel O.K. about sharing what works for you? I hope you have a restful sleep and can respond tomorrow. Chris

Jump to this post

I was sort of getting my hopes up when my husband and my doctor tried to convince me something I knew wasn't true … that there was any medication I could take, or therapy or surgery. So there was a bit of a let down when the neurologists looked me in the eye and said,
"I wish I could say your low Vitamin D levels were the cause, but I can't" I just know things are going to get worse and just trying to cope as best I can. I also deal with Major Depressive Disorder so this could be an issue of worsening down the road, but for now I just deal with what is before me. Sometimes I just cry, a nice release of tension, or go to bed early, or do something I can still do … like play video games. While the neuropathy started in my feet, it is also now in my right hand. When I rest my hand on hard surfaces it hurts, but fabrics are comfortable, so I sometimes wear a compression glove to help with that. I don't mind sharing, I find it helps the anxiety and depression a little … Ask me anything, if I can help I will try. A friend is anyone who is good to you.

REPLY
@newzbug

I was sort of getting my hopes up when my husband and my doctor tried to convince me something I knew wasn't true … that there was any medication I could take, or therapy or surgery. So there was a bit of a let down when the neurologists looked me in the eye and said,
"I wish I could say your low Vitamin D levels were the cause, but I can't" I just know things are going to get worse and just trying to cope as best I can. I also deal with Major Depressive Disorder so this could be an issue of worsening down the road, but for now I just deal with what is before me. Sometimes I just cry, a nice release of tension, or go to bed early, or do something I can still do … like play video games. While the neuropathy started in my feet, it is also now in my right hand. When I rest my hand on hard surfaces it hurts, but fabrics are comfortable, so I sometimes wear a compression glove to help with that. I don't mind sharing, I find it helps the anxiety and depression a little … Ask me anything, if I can help I will try. A friend is anyone who is good to you.

Jump to this post

@newzbug you never know what will work. Vit D may not work for most and it may not be known as a cure, but it could be a cure for you. And of course we all need vit D and it will make your bones strong. So keep up keeping on. Depression can cause negativity. It does in me. Are you taking anything for it or going to therapy for it? As for the hand, have you had it checked for carpal tunnel? It might only need an operation to correct it.

REPLY

@newzbug and @johnhans when I'm looking for some help with negative type thinking on my part, I have a goto website to watch a few short videos that I've found helpful. You might give it a try and see what you think...it's free ☺
https://www.resilientoption.com/

REPLY

@newzbug, Good morning. I think you received a welcome from @johnbishop. He has been a guiding light for me for at least 2 years and is also the very best researcher. Feel free to test him. He will rise to the challenge.

Here is what I liked about your message. "Sometimes I just cry." That was what I did when the pain woke me up in the night.....just sat on the side of the bed, held my arms and cried. Video games are a great abstraction. They worked until I found I was blowing my budget with in-app purchases. Now I settle for the free ones.

If walking is an option, find a garden walk or one by water, lake, river or ocean. My spiritual guru, Patsy, tells me to connect with the ground outside at least once a day. I do listen to Patsy. By the way, do you have a Patsy..... someone who is always there for you?

Learn from your pain. When I was first diagnosed and had made a commitment to a no opioid solution, I scheduled a visit with Patsy, She told me to "welcome the pain". "So, good morning pain....what can I learn from you today?" That's the greeting I have chosen. Fighting the pain only makes it worse.

Notice and record significant changes in your body, e.g. I used to have electrical zaps every morning at about 5 am. Now I have "the burn" at about the same time.

I will look for your "share". May you be free of pain for an afternoon, a day or even an hour. Chris

REPLY
@wilcy

The samples are marijuana! None have done anything while vaping, For some reason, driving really kills my feet! Neuropathy and cramping toes! Roadtrips used to be my hobby! Leaving to see foot doctor! Holler later!

Jump to this post

Were your samples THC plus CBD? From what I understand the SUBLINGUAL (tinctures) take 10-15 min for initial effects; 30-60 min for maximum effects and last 2-4 hours. Salves last 45-60 minutes; vaporization lasts 2-4 hours. INGESTION (ie: Capsules) take 60-90 minutes for initial effects and 2-3 hours for maximum effects with the duration of effects being 6-12 hours. It tends to be an individual process to find what works for you. More is not always better... your dispensary should be able to help you.

REPLY

Hello everyone. 😉 Hi everyone, my name is Alma. I am pleased to meet you. For several years now, I believe I have neuropathy, yet every time I mention it to my neurologist, I also have stiff person syndrome. My feet get very hot and/or get to a freezing temperature. Right now for example, my feet are curling down (I am in severe pain). There are days that my feet are so numb. Wearing socks is a definite no-no for me. I can have loose socks on and within a few minutes the socks will make indentations. This has been going on since I was diagnosed with Stiff Person Syndrome in 2009. As I indicated, my neuro really hasn't done or said anything about this issue. I need help. Today, is a very bad day. Thank you for reading this.

REPLY
Please sign in or register to post a reply.