Living with Neuropathy - Welcome to the group

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.

@johnbishop

Hi @dstewart318, I would like to add my welcome to Connect along with @rwinney and other members. I don't know much about Reflex Sympathetic Dystrophy Syndrome other than it is a subdivision of Complex Regional Pain Syndrome - CRPS type I (reflex sympathetic dystrophy). I did find some information about it on the National Organization for Rare Disorders database here:

https://rarediseases.org/rare-diseases/reflex-sympathetic-dystrophy-syndrome/

I also found some other information that may be helpful if you haven't already seen it.

NIH - Complex Regional Pain Syndrome Fact Sheet
-- https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet#How%20is%20CRPS%20treated?

Have you found any treatments that help you when it flares up?

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Hi John,
Thanks for the links to the rare disorder/ disease of CRPS. I’ve been dealing with it since a spinal fusion at the L5-S1 from a fall that occurred in 2011. I wasn’t diagnosed until 2015 as my Neurologist would not have an answer or offer suggestions on how to deal with the pain associated with this disease. Failed back surgery. But you will never hear of that spoken FROM someone in the medical field. I can’t have anything touch my big R toe, as pain level goes to a 7-8 just being still. Blowing on it hurts as an example.
Since joining the group, everyone, even those who are in a more difficult position than I’m in, have all been very positive and I do appreciate the different options that people have brought forth to try to make our lives a little more livable !!
My life has taken a turn for the better since I was introduced to MFR , and have been seeing a therapist weekly and have noticed the changes- in a good way.
So again, thanks John for your hard work, great researching, and a supporter of all of us who are having difficulty in their lives. You make it a little more bearable.
Mitch

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Hello everyone! Sometimes my SFN (small fiber neuropathy) effects my left foot more than my right. Does anyone else have that experience?

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@sherryw I have a question rather than answer, I.m sorry. How do you know what kind of neuropathy you have. I was told peripheral neuropathy, that's it. Will the neurologist know? I am not sure mine would, but I will ask. I do know I hurt. Both legs and feet with alot of cramping right now. Is that normal. At this point I don't know what is from what or is this something new.

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@sherryw I don’t know what kind of neuropathy I have although I know mine was chemo induced. One foot always bothers me more than the other and one hand is always worse than the other although neither hand is bad.

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@summertime4 @sherryw and others wanting to know how the different neuropathies are diagnosed.

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.
-- https://www.youtube.com/watch?v=3FrQ7Glvgok

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@summertime4

@sherryw I have a question rather than answer, I.m sorry. How do you know what kind of neuropathy you have. I was told peripheral neuropathy, that's it. Will the neurologist know? I am not sure mine would, but I will ask. I do know I hurt. Both legs and feet with alot of cramping right now. Is that normal. At this point I don't know what is from what or is this something new.

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I also have lots of cramping in both feet! Am about to have minor surgery to put in pain blocker electrodes in both legs!

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@johnbishop

@summertime4 @sherryw and others wanting to know how the different neuropathies are diagnosed.

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.
-- https://www.youtube.com/watch?v=3FrQ7Glvgok

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Thanks @johnbishop

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@summertime4

@sherryw I have a question rather than answer, I.m sorry. How do you know what kind of neuropathy you have. I was told peripheral neuropathy, that's it. Will the neurologist know? I am not sure mine would, but I will ask. I do know I hurt. Both legs and feet with alot of cramping right now. Is that normal. At this point I don't know what is from what or is this something new.

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@summertime4 I wish I could answer your question with certainty. This diagnosis is frustrating. @johnbishop posted a video that I watched and it gives you an idea of the types of neuropathy and diagnostic tools. My neurologist, after extensive lab work/MRIs/ nerve/muscle studies, said that I have idiopathic small fiber neuropathy. He is reluctant to do the skin biopsy because the results wouldn’t change my treatment. I would like to move forward with the skin biopsy

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@wilcy

I also have lots of cramping in both feet! Am about to have minor surgery to put in pain blocker electrodes in both legs!

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Best of luck with your surgery! Thank you for communicating with me. It is nice not to be alone on this journey!

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