1. < Neuropathy
Mentor

Member Neuropathy Journey Stories: What's Yours?

Posted by John, Volunteer Mentor @johnbishop, May 12, 2020

This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.

— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?

Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?

What's your neuropathy story?

Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.

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

Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 18, 2022
In reply to @scozzyrox777 "Hello all I am suffering horribly I have had a total of 6 back surgeries 5..." + (show)
@scozzyrox777

Hello all I am suffering horribly I have had a total of 6 back surgeries 5 lumbar lower lumbar fusion and most recently cervical neck fusion. I am now much worse after cervical fusion. I cannot sleep more than 3 to 4 hours and then awake from the pain in my shoulders neck arms hands and fingers excruciating pain… It is constant 10 24/7… I have tried opiate's and Baclofen and Lyrica…just got a Boston Scientific stimulator in my cervical region yesterday… I was hopeful but woke in same horrible pain again after 5 hours rest…had to reach for my Percocet immediately and Baclofen… Doctor seems to think I have CRPS and Carpel tunnel and ulnar nerve damage as well. Nothing is helping except the pin meds provide some relief. But he wants me off the pain meds and has tried twice unsuccessfully…. Feeling very frustrated and hopeless…Please HELP…

Jump to this post

@scozzyrox777 Hello. You have been through it, my friend. I'm so glad you reached out to Connect for support and information. Please know there is hope for you. Frustration is inevitable with all you have gone through, but it does stoke the flames of your fire. It sounds to me like you are scraping and scratching your way through any medication, treatment, surgery you can and it all has come to one big nasty head resulting in CRPS. Now may be best to learn how to calm the fire that is burning within your body. What do you think?

I too have a chronic pain syndrome called Central Sensitization and learned how to productively manage it through approaches such as physical therapy, stretching, cognitive behavioral therapy, reduction of chemicals, and emotional therapy. I learned these tools at Mayo Clinic's Pain Rehabilitation Center where I found hope again.

Have you ever considered a pain rehabilitation program?

REPLY
2 replies
scozzyrox777 | @scozzyrox777 | Jan 18, 2022
In reply to @rwinney "@scozzyrox777 Hello. You have been through it, my friend. I'm so glad you reached out to..." + (show)
@rwinney

@scozzyrox777 Hello. You have been through it, my friend. I'm so glad you reached out to Connect for support and information. Please know there is hope for you. Frustration is inevitable with all you have gone through, but it does stoke the flames of your fire. It sounds to me like you are scraping and scratching your way through any medication, treatment, surgery you can and it all has come to one big nasty head resulting in CRPS. Now may be best to learn how to calm the fire that is burning within your body. What do you think?

I too have a chronic pain syndrome called Central Sensitization and learned how to productively manage it through approaches such as physical therapy, stretching, cognitive behavioral therapy, reduction of chemicals, and emotional therapy. I learned these tools at Mayo Clinic's Pain Rehabilitation Center where I found hope again.

Have you ever considered a pain rehabilitation program?

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Someone else mentioned that to me to try... Do you know of any that take Medicare close to Waynesboro PA 17268??? Regular Rehab did not work....

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 18, 2022
In reply to @scozzyrox777 "Someone else mentioned that to me to try... Do you know of any that take Medicare..." + (show)
@scozzyrox777

Someone else mentioned that to me to try... Do you know of any that take Medicare close to Waynesboro PA 17268??? Regular Rehab did not work....

Jump to this post

@scozzyrox777 I am only familiar with Mayo's Pain Rehabilitation Center which has 3 locations, Minnesota, Arizona and Florida, and accepts Medicare. Here is more info:

https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

PA isn't exactly close, I understand how that would be difficult. I live in NY and chose to travel to Jacksonville, FL because:
A) it was warm!
B) Dr. Sletten taught the program

I will say this, regular pain rehab is no where near the approach Mayo takes, it is world renowned.

Do you have any large teaching hospitals or universities nearby? Ones that may specialize in chronic pain rehabilitation?

REPLY
fields123 | @fields123 | Jan 19, 2022
In reply to @rwinney "@scozzyrox777 Hello. You have been through it, my friend. I'm so glad you reached out to..." + (show)
@rwinney

@scozzyrox777 Hello. You have been through it, my friend. I'm so glad you reached out to Connect for support and information. Please know there is hope for you. Frustration is inevitable with all you have gone through, but it does stoke the flames of your fire. It sounds to me like you are scraping and scratching your way through any medication, treatment, surgery you can and it all has come to one big nasty head resulting in CRPS. Now may be best to learn how to calm the fire that is burning within your body. What do you think?

I too have a chronic pain syndrome called Central Sensitization and learned how to productively manage it through approaches such as physical therapy, stretching, cognitive behavioral therapy, reduction of chemicals, and emotional therapy. I learned these tools at Mayo Clinic's Pain Rehabilitation Center where I found hope again.

Have you ever considered a pain rehabilitation program?

Jump to this post

I love to find a pain Rehabilitation program in Santa Clara Co California

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fields123 | @fields123 | Jan 19, 2022

I have had neuropathy for at least10 years and now on .I like to manage with less medication.I am 93 years old. Gabapentin first on a low dose but now taking 1200mg with lots of side effects.love to try a pain rehabilitation program if i can find a place near my home and covered by medicare

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SusanEllen66 | @SusanEllen66 | Jan 22, 2022

My large nerves are damaged from Polyarthritis Nodosa (Vasculitis) I have had since 2015.
The worst part of it for me is the awful pain, hot/cold feet and hands etc. I have mostly taken the grin and bear it approach because I cannot tolerate gabapentin etc. I use the topical lotion Aspercreme, or a magnesium lotion/oil. Those products are available in drug stores, and Amazon. I would much rather use a topical medication and I find it works well for me.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 23, 2022
In reply to @SusanEllen66 "My large nerves are damaged from Polyarthritis Nodosa (Vasculitis) I have had since 2015. The worst..." + (show)
@SusanEllen66

My large nerves are damaged from Polyarthritis Nodosa (Vasculitis) I have had since 2015.
The worst part of it for me is the awful pain, hot/cold feet and hands etc. I have mostly taken the grin and bear it approach because I cannot tolerate gabapentin etc. I use the topical lotion Aspercreme, or a magnesium lotion/oil. Those products are available in drug stores, and Amazon. I would much rather use a topical medication and I find it works well for me.

Jump to this post

Hello @SusanEllen66, I know the hot/cold feeling in the hands and feet can be pretty awful at times. It's good to know that you found some topicials that provide a little relief. The Vasculitis Foundation has some education videos on PAN on their website -- https://www.vasculitisfoundation.org/education/forms/polyarteritis-nodosa/. One in particular that might be helpful is The VF Road Map to Wellness Webinar: Focus on Polyarteritis Nodosa -- https://youtu.be/zKssb0npKjs

Have you done any research to find other treatments that may help?

REPLY
1 reply
madgemgunia | @madgemgunia | Jan 23, 2022
In reply to @SusanEllen66 "My large nerves are damaged from Polyarthritis Nodosa (Vasculitis) I have had since 2015. The worst..." + (show)
@SusanEllen66

My large nerves are damaged from Polyarthritis Nodosa (Vasculitis) I have had since 2015.
The worst part of it for me is the awful pain, hot/cold feet and hands etc. I have mostly taken the grin and bear it approach because I cannot tolerate gabapentin etc. I use the topical lotion Aspercreme, or a magnesium lotion/oil. Those products are available in drug stores, and Amazon. I would much rather use a topical medication and I find it works well for me.

Jump to this post

I tried all the topicals, but Horse Liniment works best of all
Madge

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2 replies
Mentor
Chris, Volunteer Mentor | @auntieoakley | Jan 23, 2022
In reply to @madgemgunia "I tried all the topicals, but Horse Liniment works best of all Madge" + (show)
@madgemgunia

I tried all the topicals, but Horse Liniment works best of all
Madge

Jump to this post

I like horse liniment as well, however if you are allergic to sulpha be sure to check for the msm in the ingredients.

REPLY
1 reply
SusanEllen66 | @SusanEllen66 | Jan 24, 2022
In reply to @auntieoakley "I like horse liniment as well, however if you are allergic to sulpha be sure to..." + (show)
@auntieoakley

I like horse liniment as well, however if you are allergic to sulpha be sure to check for the msm in the ingredients.

Jump to this post

MSM is related to sulfa? I did not know that. I’m allergic to any sulfa drugs. Thanks

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