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.

davelobb12 | @davelobb12 | Feb 5, 2022

Has anybody heard of stem cell treatment or anything for help?

John, Volunteer Mentor | @johnbishop | Feb 5, 2022

In reply to @davelobb12 "Has anybody heard of stem cell treatment or anything for help?" + (show)

I've not read about any successful treatment using stem cells to help neuropathy although there are a lot of stem cell clinics waiting to take your money for a lot of false hope (just my non medical opinion). Here's a discussion where members have talked about the topic.

Stem Cell Therapy for Neuropathy: https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

Have you looked into stem cell therapy for neuropathy?

Angie P. | @ancopau1998 | Feb 6, 2022

Hi, I had slight numb feeling about 20 years ago from diabetes in my feet but was not too bad i could handle it.Now dx with Multiple Myeloma almost 3 years now my feet feel like they are shrink wrapped tight. and the numb feeling is much worse I want to cry everyday! I take only Revlimid and no other symptoms just numb feet with no pain. I'm so afraid one day I will not feel them at all!!

John, Volunteer Mentor | @johnbishop | Feb 6, 2022

In reply to @ancopau1998 "Hi, I had slight numb feeling about 20 years ago from diabetes in my feet but..." + (show)

Hi Angie, I have numb feet also. I find that massaging my feet daily with a mositurizing lotion makes them feel better. I also have to wear compression socks daily to prevent swelling in my legs so my feet always feel shrink wrapped. There is another discussion you might like to join in to read what others with similar symptoms have shared:
-- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

You mentioned diabetes as the cause. Have you made any changes to help with your diabetes?

sikocesca | @sikocesca | Feb 6, 2022

In reply to @govisri "It would be great if you can provide more details about the doctor in Scottsdale and..." + (show)

I would also like more details of procedure and any other helpful information.

p9n8 | @p9n8 | Feb 6, 2022

In reply to @johnbishop "Welcome @p9n8, I'm sorry to hear your neuropathy pain is getting worse. I also taking supplements..." + (show)

What do you take for pain, I've been taking Tylenol 500's but they are hard on you're liver. Looking for a safer alternative.

Angie P. | @ancopau1998 | Feb 6, 2022

In reply to @johnbishop "Hi Angie, I have numb feet also. I find that massaging my feet daily with a..." + (show)

Hi John thanks for the info. As far as diabetes that is in control. I only had very slight numbness but taking the Revlimid for Multiple Myeloma has made it much worse. I will get the compression socks for sure. Also I do put moisturizer on my feet everyday. I'm going to go to the site now that you sent me! Thanks again!!

davelobb12 | @davelobb12 | Feb 6, 2022

In reply to @johnbishop "I've not read about any successful treatment using stem cells to help neuropathy although there are..." + (show)

I have read some things about it being offered in other countries very suspicious... But i just can't understand why there is no hope or medicine for this? There must not be any money in it for God knows who...

John, Volunteer Mentor | @johnbishop | Feb 6, 2022

In reply to @p9n8 "What do you take for pain, I've been taking Tylenol 500's but they are hard on..." + (show)

Fortunately I only have the numbness and a little tingling with my neuropathy so I don't have to take anything for pain. The supplements I take have allowed other people to get off of their neuropathy pain meds but each of us is different so it may not work for everyone. I posted my story in another discussion here -- https://connect.mayoclinic.org/comment/310341/

fala | @fala | Feb 6, 2022

In reply to @davelobb12 "So far that has been a big help for sleeping. I completely agree!" + (show)

Sleep is a problem than has gotten worse throughout the years. Prescriptions have too many side effect, so I went to THC.
I use CBD for my PN, but the THC does not put me to sleep. Is there a particular brand or strain that works best? When I first tried Marijuana in my youth, some party people got very sleepy, but that was never a side effect for me. I thought I just did not take in enough inhaling. Now, I have tried several brands, even buying the most expensive to see if that was the answer. Nope.
I sure wish I could solve my sleep problem!! Any ideas out there?