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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: Nov 23 5:30pm | Replies (573)

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@earlamond

I have idiopathic neuropathy and it is getting worse I need to know what I might be doing wrong that’s exacerbating it. And what I might do to help myself.

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Replies to "I have idiopathic neuropathy and it is getting worse I need to know what I might..."

Good afternoon @earlamond. Here's a hearty welcome to Connect. We are a group of patients, caregivers, and providers. We do not have medical licenses or background so we cannot diagnose issues or prescribe medication and treatment. What we can do is share our experiences with you letting you know exactly how we have tackled this problem of idiopathic neuropathy.

In order for us to be helpful, we will need to know what you are doing now and how your body is responding. Do you have an actual diagnosis of idiopathic neuropathy? What areas of your body are affected? Do you have pain, numbness, tingles? In the same place or at different places? Is your neuropathy peripheral....as in arms, hands, legs, feet?

Do you have any idea how you became a host for neuropathy? For example, I was an adventure-prone disaster.....falling off horses and down mountains. I am just scheduling by 14th orthopedic surgery. Somehow I think that must have led me down the neuropathy path.

What has helped me the most you might ask. First....medical cannabis. Second.....Mayo Connect and third.....a simple lifestyle. It was about time I settled down.

May you be free of suffering and the causes of suffering.
Chris

Same here and I would like to know what would help

@earlamond I can see you want to connect with members who may be able to help you on your journey with neuropathy. Because of that, I have moved your post into an active discussion to allow you to better connect with members like @bill5 and @johnbishop.

I can see that Chris has welcomed you and shared some thoughts as well. I will let you start by answering some of her questions to allow members to get to know you and better understand where you are at in your journey.

Hello @earlamond, I would like to welcome you to Connect along with @artscaping @amandajro @bethwiseman and others. While we wait to hear a little more from you on your diagnosis and symptoms I can offer a few suggestions based on what I have learned.

By far the most important thing I have learned since joining Connect is that you have to learn as much as you can about your specific condition. What initially helped me was reading the experiences and learning what others have shared. I posted my neuropathy story earlier in this discussion here - https://connect.mayoclinic.org/comment/310341/

The second thing that helped me was finding credible health information on neuropathy and not just the "neuropathy cure ads" you see when searching the Internet. There is a discussion you might find helpful - How do you identify trustworthy health information?: https://connect.mayoclinic.org/discussion/how-do-you-identify-trustworthy-health-information/ -- ​My two go to websites are:
-- Neuropathy Commons: https://neuropathycommons.org/
-- The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

I have no medical training or background but think that there is no cure for neuropathy and it all boils down to living as well as you can with neuropathy by using any method that gives you relief from your neuropathy symptoms. You might find this page on the Foundation for Peripheral Neuropathy as a good start at being more informed: https://www.foundationforpn.org/living-well/.