Contributing to Neuropathy research - Stuff That Works

Posted by runnergirl @runnergirl, Feb 13, 2022

For those in the US who might be interested, check out the Foundation for Peripheral Neuropathy advocacy section about writing a letter to your local senator, asking them to support more research for peripheral neuropathy. They provide a template to help guide you. https://www.foundationforpn.org/advocacy/ The section is at the bottom of the page, but here is the link to the template: https://www.foundationforpn.org/wp-content/uploads/2021/02/PN-Research-Advocacy-What-to-do-FY22.pdf

One other site that might be of interest is StuffThatWorks, a crowdsourcing web platform that organizes content into useful information. And, possibly more research in the future. https://www.stuffthatworks.health/

Interested in more discussions like this? Go to the Neuropathy Support Group.

Stuff That Works is an online crowdsourcing platform that collects data to help with medical research. If you're interested in learning more and maybe even becoming a contributor, this link will take you to their site: https://www.stuffthatworks.health/small-fiber-neuropathy/join

So far, there are 800 contributors for neuropathy - it's been interesting to read through what folks have tried, learning more about what works and what hasn't worked.

REPLY
@runnergirl

Stuff That Works is an online crowdsourcing platform that collects data to help with medical research. If you're interested in learning more and maybe even becoming a contributor, this link will take you to their site: https://www.stuffthatworks.health/small-fiber-neuropathy/join

So far, there are 800 contributors for neuropathy - it's been interesting to read through what folks have tried, learning more about what works and what hasn't worked.

Jump to this post

I suffer with burning feet and itching I may have elevated kidney I don't know Friday I'm taking Gabapentin for my pain and itching it makes me nervous I take it at night it helps to sleep real good I'm hoping to help my itching does anybody have this problem

REPLY
@ajb

I suffer with burning feet and itching I may have elevated kidney I don't know Friday I'm taking Gabapentin for my pain and itching it makes me nervous I take it at night it helps to sleep real good I'm hoping to help my itching does anybody have this problem

Jump to this post

Welcome @ajb, You mention the gabapentin helps you sleep good at night but you still have itching. There is another discussion started by @artscaping that you might find helpful --- What do you do for Neuropathy itch?: https://connect.mayoclinic.org/discussion/what-do-you-do-for-neuropathy-itch/. In one of the posts in the discussion she mentions that she found a product that really helps. Here is a link to her post - https://connect.mayoclinic.org/comment/652324/

Have you been diagnosed with neuropathy or other condtions?

REPLY
@runnergirl

Stuff That Works is an online crowdsourcing platform that collects data to help with medical research. If you're interested in learning more and maybe even becoming a contributor, this link will take you to their site: https://www.stuffthatworks.health/small-fiber-neuropathy/join

So far, there are 800 contributors for neuropathy - it's been interesting to read through what folks have tried, learning more about what works and what hasn't worked.

Jump to this post

This is great! Thank you!

REPLY
@johnbishop

Welcome @ajb, You mention the gabapentin helps you sleep good at night but you still have itching. There is another discussion started by @artscaping that you might find helpful --- What do you do for Neuropathy itch?: https://connect.mayoclinic.org/discussion/what-do-you-do-for-neuropathy-itch/. In one of the posts in the discussion she mentions that she found a product that really helps. Here is a link to her post - https://connect.mayoclinic.org/comment/652324/

Have you been diagnosed with neuropathy or other condtions?

Jump to this post

Yes I have I been suffering for years is supposed to help my itching so far it hasn't

REPLY
@runnergirl

Stuff That Works is an online crowdsourcing platform that collects data to help with medical research. If you're interested in learning more and maybe even becoming a contributor, this link will take you to their site: https://www.stuffthatworks.health/small-fiber-neuropathy/join

So far, there are 800 contributors for neuropathy - it's been interesting to read through what folks have tried, learning more about what works and what hasn't worked.

Jump to this post

Thank you for sharing @runnergirl !! 🙂 Best wishes to you!

REPLY
@rivermaya34

Thank you for sharing @runnergirl !! 🙂 Best wishes to you!

Jump to this post

Thank you, @rivermaya34 !

I sent my letter to both California senators too - #squeakywheel

REPLY

Foundation for Peripheral Neuropathy Upcoming Webinar

FPN Webinar: Vetting Sources of Medical and Scientific Information
Fri, Mar 18, 2022 2:00 PM - 3:00 PM CDT

Have you ever wondered whether you've found a miracle cure for your neuropathy, or if you're just an unwitting victim of another snake oil salesman? How can you interpret the promising headlines in a magazine article versus the more tempered claims of the original research study? What evidence is enough evidence to ensure a new treatment is right for you? In this webinar we will go over how to vet research information, critically assess medical claims with a skeptical eye for research-based evidence, and how to better understand what types of biomedical research exist and how to interpret the claims made in different types of studies. At the end of this event, you will have tips and tools to ensure you're bringing a critical eye to any new medical claims that you come across in your everyday life.

The Foundation for Peripheral Neuropathy (FPN) welcomes Kristy Townsend, PhD, Associate Professor; Department of Neurological Surgery, Wexner Medical Center at The Ohio State University and FPN Board Member as she shares on this important topic.

A Q&A session will follow the presentation.

Link to Register: https://register.gotowebinar.com/register/1170756004184368656

REPLY
@ajb

I suffer with burning feet and itching I may have elevated kidney I don't know Friday I'm taking Gabapentin for my pain and itching it makes me nervous I take it at night it helps to sleep real good I'm hoping to help my itching does anybody have this problem

Jump to this post

@ajb - for my itchy symptoms, I have found that either Claritin or Zyrtec work for me.

REPLY
@runnergirl

@ajb - for my itchy symptoms, I have found that either Claritin or Zyrtec work for me.

Jump to this post

I can't take those I'm allergic to them

REPLY
Please sign in or register to post a reply.