← Return to New to Neuropathy 2 months.

Discussion

New to Neuropathy 2 months.

Neuropathy | Last Active: Feb 1, 2022 | Replies (69)

Comment receiving replies
@bethunger

This is my first posting, so I am new as well. I used to ride, run and hike. They don't know what caused my neuropathy, but it is absolutely miserable. I so miss riding my bike. My feet and legs hurt too much afterwards to keep giving it a try. Such a great loss that I never saw coming. I hope your neuropathy stays mild and you can continue your active life.

Jump to this post


Replies to "This is my first posting, so I am new as well. I used to ride, run..."

@bethunger
Hi, welcome to Connect. I am sorry to here this about your situation. PN can seem very tragic as it does rob one of many things that have given pleasure in life. My wife has had it for going on 7 years now (from chemo) and it breaks my heart sometimes to see what her life has been reduced to. She suffers so much, and hardly gets out at all, even before covid.

When did you start to have the symptoms, and when you say they do not know the cause, do you have any other ill health conditions that you suspect might possibly be related? My best to you, Hank

Hello @bethunger, I would like to add my welcome to Connect along with @jesfactsmon @amandajro and other members. I also have idiopathic small fiber peripheral neuropathy. It is a great loss when you can no longer do the things you really enjoy. Sometimes it helps when we can find other activities that allow us to find joy in our daily lives. I've found out that what helps me is to learn as much as you can about your condition so that you can better advocate for your health. Connect is a great place to learn what others with similar symptoms and conditions have shared that helps them.

Here are a few discussions and links that you might find helpful in your neuropathy journey:
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
- Neuropathy Commons - great site for learning everything you ever wanted to know about neuropathy: https://neuropathycommons.org/

It sounds like riding your bike may be what you miss doing the most. Are you able to just ride shorter distances or is the pain still too much?

I'm very new to this and don't really know what to say so I'll give a short version. My neuropathy, my doctors tell me, is due to alcohol abuse. i am a year completely clean now after spending 30 days in a very excellent rehab facility. on the other hand I'm dealing with this horrible neuropathy that just continues to get worse in my own mind. I've been on gabapentin the past year and am currently on the maximum dose of 3,600 mg daily, or I think I might go crazy, or have a seizure. I've always worked out and before being forced into early retirement I walked at least 10,000 steps a day in my last position. I've not been tested because I thought what's the use of a specialist diagnosing me for something I know I already have. I too miss riding my "very high dollar" street bike as well. Now it seems to substitute for a nice coat rack. Really sad too because I have this newly found zeal to want to work with young people about their own addictions. I'm on the right track, but I have to be honest, it does get me down at times. Thank God Covid is getting somewhat better!!!