Living with Neuropathy - Welcome to the group

Posted by Colleen Young @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?

@wilcy

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

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@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

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@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

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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!

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@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

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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.

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@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.

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@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.

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@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/

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@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

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@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!

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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.

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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.

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@gmaw4

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.

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Tks, dispensary’s sold me 5 samples! All different levels of thc and cbd levels! Thought it would atleast me from neuropathy! Nothing! Guess I will get back with them! Expensive!

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@mrsbv

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.

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Hi Alma @mrsbv, There is another discussion here on Connect that I think you may find helpful and may offer an alternative therapy to treat your pain.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@mrsbv

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.

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@mrsbv
Hi Alma!
Welcome to our group!
As you many know, we are not medical people, but people who have experiences to share with you.
We are also VERY GOOD listenters.

I am happy you are seeing a neurologist, but sad that your voice is not being heard!
Is this the only reason why you see the neurologist or are you being treated for other ailments?
Have you ever had a test to determine if you have any nerve damage in your legs?

I have many of the symptoms you have.
My feet get so cold, they actually hurt!
I have one toe that is starting to turn down, too.
I tried on closed shoes today, and not only did I have a difficult time getting my foot in, but when I finally didn, my toe was turned down making it impossible to walk.
Thank goodness I live in a warm climate where I can wear flip-flops most of the year.

My neurologist sent me to a vascular doctor for a couple of different kinds of ultra sounds to see if I have any vascular problems.
According to the neurologist, my blood flow is not good in either leg.
He says the blood is puddling in one area.
I had an ablation (where they burn off the end of the nerve) so that the blood would be re-routed.
I was told at the beginning it probably would do nothing for the neuropathy of when my toes turn anywhere from blue to purple to almost black when they hang.
All the procedure did, which is important, is help with the swelling.

The reason I tell you this is so that you can share it with your doctor.
Perhaps he/she will get some ideas of alternatives for you AND MOST IMPORTANTLY, listen to you!

Good luck!
Ronnie (GRANDMAr)

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I have peripheral Neuropathy caused by being poisoned with Levaquin. First problem that cropped up was Psoriasis abou 3 months after surgery where I was given Levaquin IV to prevent infection. The Psoriatic Arthritis. Now Peripheral Neuropathy. I refuse to give up or give in to any of it. It isn't in my DNA. I am 76 yrs old and have remained active however I have a problem with the owners and managers of our mobile home park here in North Fort Myers FL I have found that water Aerobics does wonders for my strength and balance. However we bought a mobile a year ago in this park and I requested permission to put up an above ground pool for water therapy. I gave them a note from my Dr that it was necessary for my physical disability neuropathy. I got a letter from their attorney that was the most condescending demeaning letter I have ever seen in my life. He informed me that he has neuropathy and couldn't imagine any type of water therapy that would help my condition. The guy is not a Dr he is an attorney who obviously thought he knew more than my neurologist who is one of the tops in his field in the eastern U.S.

Anyway my question for anyone here is do you have good luck with water therapy or water aerobics.
Than you for your answers.

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