Living with Neuropathy - Welcome to the group

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

could I join your group?
I have Idiopathic progressive polyneuropathy so reading your stories sure gives me insight as to what to expect as time goes on.
Regards,
Jack Buchter

Hello Jack @medman18, No need to join the group, if you have neuropathy you are welcome to share experiences, ask questions as we all learn from each others experiences. I see by reading through some of your previous posts you've posted in several neuropathy discussions. Wondering if you might also find the following discussions helpful.

-- Idiopathic Progressive Polyneuropathy: How to find a specialist?
https://connect.mayoclinic.org/discussion/idiopathic-progressive-polyneuropathy/
-- Member Neuropathy Journey Stories: What's Yours?:
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Here are a couple of websites I use for learning more about neuropathy and possible treatments:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Hello again Chris. I'd like to ask my doctor for a prescription, for medical canabis, but what do people ask for? Is it pill form? (you certainly don't smoke it, I'm sure!) Is the CBD/THC you take a prescription also, or is that separate that you buy yourself? Any good brand? I'm desperate for SLEEP!!!!!

I was to see my doctor just the other day and he informed me that he could not prescribe cannabis but he did recommend a supplement to get at the health food store. Next time I go to town, I will get some.

I wish I could say yes. But nothing works.

I wish I could say yes. But nothing works.

I had back surgery 2 yrs ago that resulted in neuropathy in both feet.
So bad for while I didn’t drive. I have found couple things that give me some relief, Amitriptyline
Amitriptyline is a tricyclic antidepressant that is widely used to treat chronic neuropathic pain (pain due to nerve damage). It is recommended as a first line treatment in many guidelines. Neuropathic pain can be treated with antidepressant drugs in doses below those at which the drugs act as antidepressants.
Also I use a foot roller with the spiky knobs to activate nerves and roll back and forth while sitting in chair and alternate feet. The roller can be chilled but I prefer room temp.
I am always looking for more ways to get relief so please share.

Hello @luckyd2002, Welcome to Connect. Sorry to hear that your back surgery resulted in neuropathy in your feet. Thank you for sharing what helps you. Thought you might also find the following list of treatments on the Foundation for Peripheral Neuropathy website helpful - https://www.foundationforpn.org/treatments/.

You might also find the following discussion helpful:
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Have you heard of or tried Myofascial Release Therapy (MFR)?