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.

wilcy | @wilcy | Jul 24, 2019
In reply to @gmaw4 "Were your samples THC plus CBD? From what I understand the SUBLINGUAL (tinctures) take 10-15 min..." + (show)
@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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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 24, 2019
In reply to @mrsbv "Hello everyone. ;) Hi everyone, my name is Alma. I am pleased to meet you. For..." + (show)
@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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1 reply
grandmaR | @grandmar | Jul 24, 2019
In reply to @mrsbv "Hello everyone. ;) Hi everyone, my name is Alma. I am pleased to meet you. For..." + (show)
@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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gonefishin2743 | @gonefishin2743 | Jul 25, 2019

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.

REPLY
1 reply
gonefishin2743 | @gonefishin2743 | Jul 25, 2019
In reply to @wilcy "Tks, dispensary’s sold me 5 samples! All different levels of thc and cbd levels! Thought it..." + (show)
@wilcy

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!

Jump to this post

It takes a while to get built up in your system. I use CBD with higher THC content which is made for me by a family member who is a grower in MI. Taking it once is not going to tell you much. I sleep like a baby and it definitely does help me a bunch. We are all different so I am not saying it will help you but I do know you have to give it a chance to build up in your system. I have been on it now for 3 months and it is really helping a whole lot. It was suggested by my neurologist who is one of the tops in his field in the eastern U.S. I also take ginger root, Alpha Lipoic acid, apple cider vinegar and Turmeric (3 grams a day) and all of these 4 items can be bought in Walmart pharmacy in CAPSULE form. Just a suggestion. It works for me but might not work for you. Good luck. I wish you well.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 25, 2019
In reply to @gonefishin2743 "I have peripheral Neuropathy caused by being poisoned with Levaquin. First problem that cropped up was..." + (show)
@gonefishin2743

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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Hello @gonefishin2743 -- Welcome to Connect. There is another discussion that you might want to view to meet other members disussing water exercises for neuropathy.

> Groups > Neuropathy > Water Exercise for Peripheral Neuropathy
-- https://connect.mayoclinic.org/discussion/water-exercise-for-peripheral-neuropathy/

Have you thought about checking around the area for a mobile home park that allows an above ground pool or is that not an option?

REPLY
wilcy | @wilcy | Jul 25, 2019
In reply to @gonefishin2743 "It takes a while to get built up in your system. I use CBD with higher..." + (show)
@gonefishin2743

It takes a while to get built up in your system. I use CBD with higher THC content which is made for me by a family member who is a grower in MI. Taking it once is not going to tell you much. I sleep like a baby and it definitely does help me a bunch. We are all different so I am not saying it will help you but I do know you have to give it a chance to build up in your system. I have been on it now for 3 months and it is really helping a whole lot. It was suggested by my neurologist who is one of the tops in his field in the eastern U.S. I also take ginger root, Alpha Lipoic acid, apple cider vinegar and Turmeric (3 grams a day) and all of these 4 items can be bought in Walmart pharmacy in CAPSULE form. Just a suggestion. It works for me but might not work for you. Good luck. I wish you well.

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Tks for reply! Have been taking those supplements and more for over a year! Went to cbd dispensary today! For pain, told me to use edibles! Ate one square off chocolate bar ! Seems like it really helped with pain! Numbness still here! No throbbing, cramping toes while driving! In morning, will find out!

REPLY
1 reply
gonefishin2743 | @gonefishin2743 | Jul 26, 2019
In reply to @wilcy "Tks for reply! Have been taking those supplements and more for over a year! Went to..." + (show)
@wilcy

Tks for reply! Have been taking those supplements and more for over a year! Went to cbd dispensary today! For pain, told me to use edibles! Ate one square off chocolate bar ! Seems like it really helped with pain! Numbness still here! No throbbing, cramping toes while driving! In morning, will find out!

Jump to this post

Good to hear of your success. Yes I have to watch for cramps also. If you haven't had any blood work done recently you might want to have your potassium level checked. If your potassium is low you will have cramps and that is something you need to watch because of the possible cardiac issues.

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1 reply
wilcy | @wilcy | Jul 26, 2019
In reply to @gonefishin2743 "Good to hear of your success. Yes I have to watch for cramps also. If you..." + (show)
@gonefishin2743

Good to hear of your success. Yes I have to watch for cramps also. If you haven't had any blood work done recently you might want to have your potassium level checked. If your potassium is low you will have cramps and that is something you need to watch because of the possible cardiac issues.

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Tks, will ck it!

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wilcy | @wilcy | Jul 26, 2019
In reply to @artscaping "@wilcy, Hi there, I notice that you started medical cannabis on Jul 8. You thought it..." + (show)
@artscaping

@wilcy, Hi there, I notice that you started medical cannabis on Jul 8. You thought it would be interesting. I found it a bit overwhelming and intimidating until I found a "guide(s)" to show me the way. It does take quite a bit of experimenting and self-educating. When you went to the dispensary, were there folks to show you all of the options that might be appropriate for your condition? Of course, you do have to remember that you can always have more but you can never have less so start low and go slow.

In 3 years I have had only 2 episodes where I was loopy. Both involved mixing cannabis with alcohol. Now I know.....you just can't risk it. The loopy does go away in about 3 hours and you will be fine.

At this point, I use tinctures, topicals, and a vape cartridge..... no flowers, beverages or edibles. I have worked out a conservative and reliable strategy called Chris's protocol.

I know that product options have increased since I started. Would you be willing to share what products you are using and how you are feeling? If you have a question or two, I would be happy to help if I can.

Please be safe and protected.......Chris

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Used edible yesterday! Seemed to help!

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