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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.

quinceykk | @quinceykk | Aug 5, 2021
In reply to @suzanne2 "Just wanted to offer some information on something that I have found helps me get a..." + (show)
@suzanne2

Just wanted to offer some information on something that I have found helps me get a better night's sleep. I have neuropathy issues and very bad restless legs. Each has their own issues that contribute to my getting very little sleep at night. I did some research and discovered weighted blanket. They seemed to have given some people a better nights sleep so I invested in one. So glad I did.. Been using it about a month and I am finally getting a solid night's sleep.of 6-8 hours. Before it was 3-4 hors a night. This may be the wrong feed for this information but I am so happy to finally get some rest I wanted to share in hopes it might help someone else.

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I use a weighted blanket, too, and it helps. Ours is also an electric blanket, and I have found that having low heat for just the first hour really helps. Our blanket has dual controls, so my husband doesn't have to be heated in the summer.

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teray47 | @teray47 | Aug 6, 2021

I have neuropathy in my feet as a result of Chemo 20 years ago. The past year or so it has started to affect my balance. Not sure what to do ?

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1 reply
mcd123 | @mcd123 | Aug 6, 2021
In reply to @iampatient ". The name is Hemp-AID and it is produced in Calgary Alberta . The name of..." + (show)
@iampatient

. The name is Hemp-AID and it is produced in Calgary Alberta .
The name of the website is sativa group . Anti-inflammatory Product. It comes in a large 8 ounce spray can and It is expensive but a little oil goes a long way. Within about 15 minutes my pain is gone for a very long time!
I hope that it helps with your pain! I swear by it.
Please post how it works for you if you try it so more people can be helped with their nerve pain.

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I'm having a hard time finding the product can you be more specific please. Something that looks like it says sold out. I just need more direction. Thank,you so much.

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1 reply
mandrake70 | @mandrake70 | Aug 6, 2021

Hi everyone. I am writing for my mother. She is 76 and has diabetic neuropathy. The pain is mostly in her legs and particularly around her thighs. She is currently weening off of Amitriptyline since it didn't help and sky rocketed her glucose levels. She has been really good about keeping her glucose level at the right level so this has really upset her and then the withdrawal. The withdrawal is pretty bad and I am not too happy with her doctor at the moment. I read through pages of stories and have answered questions about ketamine infusions before. I am looking to see if anyone has any suggestions at this point for things I can do to help or options for pain relief. She can't take gabapentin and is not going to take another med like Amitriptyline after the horrendous results. I have looked at the Neuropathy sites and was hoping you all might have some better suggestions. Thank you.

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1 reply
iampatient | @iampatient | Aug 6, 2021
In reply to @mcd123 "I'm having a hard time finding the product can you be more specific please. Something that..." + (show)
@mcd123

I'm having a hard time finding the product can you be more specific please. Something that looks like it says sold out. I just need more direction. Thank,you so much.

Jump to this post

The website is sativagroup and the name of it is Hemp-Aid pain spray. I have a photo of what it looks like but
I am not permitted to post the photo. Let me know if you have any more problems obtaining it

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1 reply
iampatient | @iampatient | Aug 6, 2021

Photo of product. Hemp-Aid
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Mentor
John, Volunteer Mentor | @johnbishop | Aug 6, 2021
In reply to @teray47 "I have neuropathy in my feet as a result of Chemo 20 years ago. The past..." + (show)
@teray47

I have neuropathy in my feet as a result of Chemo 20 years ago. The past year or so it has started to affect my balance. Not sure what to do ?

Jump to this post

Hello @teray47, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Sorry to hear you are starting to have balance problems. I also have to be careful after first standing up and taking the first few steps due to balance problems. You might find some suggestions in the following discussion:

-- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Also, the Foundation for Peripheral Neuropathy has some exercises and physical therapy on their website here - https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/

Are you on any medications for your neuropathy or have you tried any alternative therapies?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 6, 2021
In reply to @mandrake70 "Hi everyone. I am writing for my mother. She is 76 and has diabetic neuropathy. The..." + (show)
@mandrake70

Hi everyone. I am writing for my mother. She is 76 and has diabetic neuropathy. The pain is mostly in her legs and particularly around her thighs. She is currently weening off of Amitriptyline since it didn't help and sky rocketed her glucose levels. She has been really good about keeping her glucose level at the right level so this has really upset her and then the withdrawal. The withdrawal is pretty bad and I am not too happy with her doctor at the moment. I read through pages of stories and have answered questions about ketamine infusions before. I am looking to see if anyone has any suggestions at this point for things I can do to help or options for pain relief. She can't take gabapentin and is not going to take another med like Amitriptyline after the horrendous results. I have looked at the Neuropathy sites and was hoping you all might have some better suggestions. Thank you.

Jump to this post

Hi @mandrake70, While you wait for others to offer what has helped them, you might find reading member posts in this discussion helpful -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

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teray47 | @teray47 | Aug 6, 2021
In reply to @johnbishop "Hello @teray47, Welcome to Connect, an online community where patients and caregivers share their experiences, find..." + (show)
@johnbishop

Hello @teray47, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Sorry to hear you are starting to have balance problems. I also have to be careful after first standing up and taking the first few steps due to balance problems. You might find some suggestions in the following discussion:

-- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Also, the Foundation for Peripheral Neuropathy has some exercises and physical therapy on their website here - https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/

Are you on any medications for your neuropathy or have you tried any alternative therapies?

Jump to this post

I am not on any medication as I have no pain with my neuropathy.
I will check out the exercises you suggested.

REPLY
gailmarie123 | @gailmarie123 | Aug 6, 2021

Hi Colleen, thank you for allowing me to join your group, How do I post a question?

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