1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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.

Mentor
John, Volunteer Mentor | @johnbishop | Jul 5, 2021
In reply to @bbsinflorida "PN and statin drugs? I had symptoms develop with "wearing socks" effect in feet and lower..." + (show)
@bbsinflorida

PN and statin drugs? I had symptoms develop with "wearing socks" effect in feet and lower legs that seemed to coincide with increase in Lipitor from 40mg to 80mg daily as ordered by my cardiologist. I am not diabetic. My cholesterol is not dramatically high and I was taking 40mg for several years, but the cardiologist made the increase. The symptoms onset about two months after the Lipitor increase - cardiologist said it is just coincidence. Has anyone had a similar experience or any insight on potential association of statin drugs and PN? Any alternative medications for cholesterol that you take that reduced or eliminated PN? Thanks!

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Hello @bbsinflorida, Welcome to Connect. I have no medical training or background but had a similar discussion with my primary care doctor who wanted to put me on a statin for high cholesterol. I had already read about statin induced neuropathy and did not want to make my neuropathy any worse than it already was so I declined and said I would work on lifestyle changes to lower my cholesterol numbers. Here's a few discussions you may want to read and learn what others have shared.

-- Statins cause peripheral neuropathy?: https://connect.mayoclinic.org/discussion/statins-cause-peripheral-neuropathy/
-- Connection of statins, rosvastatin, with neuropathy of feet?: https://connect.mayoclinic.org/discussion/connection-of-statins-rosvastatin-with-neuropathy-of-feet/
-- Is there any connection with statin use and neuropathy?: https://connect.mayoclinic.org/discussion/is-there-any-connection-with-statin-use-and-neuropathy-i-have-had/

10 Natural Ways to Lower Your Cholesterol Levels: https://www.healthline.com/nutrition/how-to-lower-cholesterol

Has your cardiologist recommended any alternatives to medications to lower your cholesterol?

REPLY
bbsinflorida | @bbsinflorida | Jul 5, 2021

Thank you @johnbishop - I really appreciate the information. He has no knowledge of this subject and said he would need to review related studies before proceeding with something different. I will review the posts you cited and prepare a "background paper" so he can come up to speed. I am surprised that I had to "find" the statin/PN potential relationship on the internet and my doctor was unaware, but it is what it is. My medication plan is with Express Scripts and I have three options with them: Fenofibrate, Repatha, and Praluent. If anyone has experience with these as alternatives to statins - or any other medications - then I would certainly appreciate any insights. Thank you!

REPLY
pixiejacq | @pixiejacq | Jul 5, 2021
In reply to @carlyschneider "It was dx by skin punch (biopsy of three parts of my leg, ankle, just above..." + (show)
@carlyschneider

It was dx by skin punch (biopsy of three parts of my leg, ankle, just above the knee and thigh) and a antibodies test which showed higher level of TS-HDS antibodies.

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Oh wow, I had no idea these procedures were done to diagnose any kind of neuropathy! Would you mind telling me what your symptoms are/were? Thank you!

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2 replies
crygh2 | @crygh2 | Jul 5, 2021
In reply to @pixiejacq "Oh wow, I had no idea these procedures were done to diagnose any kind of neuropathy!..." + (show)
@pixiejacq

Oh wow, I had no idea these procedures were done to diagnose any kind of neuropathy! Would you mind telling me what your symptoms are/were? Thank you!

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leg swelling pain when walking

REPLY
carlyschneider | @carlyschneider | Jul 5, 2021
In reply to @pixiejacq "Oh wow, I had no idea these procedures were done to diagnose any kind of neuropathy!..." + (show)
@pixiejacq

Oh wow, I had no idea these procedures were done to diagnose any kind of neuropathy! Would you mind telling me what your symptoms are/were? Thank you!

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Sure. Last June it started with just numbness in my left foot. No pain. By November I had numbness in both feet with pain in my arches, electric shocks (only in right foot) burning sensations in my tailbone area. By Jan I was having sciatic pain down both legs. After EVERY test in the book to rule out things (minus spinal tap) I was just dx this May. In the last month, my symptoms have “quieted” but not gone away. Every day is a mystery of how I will feel.
If you don’t mind as well, What type of neuropathy are you dx with and what are your symptoms?

REPLY
2 replies
sam31 | @sam31 | Jul 5, 2021
In reply to @johnbishop "Hi Rick @sam31, Welcome to Connect. I went for 20+ years with the numbness starting in..." + (show)
@johnbishop

Hi Rick @sam31, Welcome to Connect. I went for 20+ years with the numbness starting in my toes but never had any associated pain. I'm 78 now and the numbness is around the ankles and feet. There are a couple of discussions you may want to read through and learn what others have shared helps them.

Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

When I first discussed the numbness in the toes, my primary care doctor told me it was probably nerve damage but they could run some tests to determine if that's what it was. My next question was if they find out it's nerve damage what can you do to help? His answer was nothing can be done for the numbness. The medications are all to treat pain symptoms. So, I waited 20 years and the numbness felt like it was just below my knees and I was having the same concerns and questions as your asking now. I had the nerve conduction testing and met with the neurologist for a physical exam and was diagnosed with idiopathic small fiber peripheral neuropathy. I went home pretty disappointed when getting the same answer about what can you do to help the numbness --- nothing can be done. That's pretty much my story and how I found Connect while searching for a local support group. I posted my story and what has helped me some in the discussions above. Here's my neuropathy journey story - https://connect.mayoclinic.org/comment/310341/

While you may expect the numbness to continue up your legs (same thing my neurologist told me), there are things you can do to help. I'm not sure I would have additional testing unless I believed it wasn't neuropathy. My neurologist said about 20% of people with neuropathy don't have pain as a symptom and to consider myself lucky. So, I made a decision to learn as much as I can about neuropathy, available treatments, and things that I can do myself to help my situation. A couple of my go to websites for learning about neuropathy:

-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/
-- And for medical research searching: https://scholar.google.com/

If you can walk and run, keep doing it 🙂 Have you made any lifestyle changes to help?

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Hi John,

Thanks so much for your quick response. After 20 years, are you still without pain and can you still walk/run normally?

You mentioned there are things I could do to help or delay the numbness. Are there exercises for this? Supplements. etc?

Thanks so much for the links, I'll check them out.

Blessings to all,

Rick

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 5, 2021
In reply to @sam31 "Hi John, Thanks so much for your quick response. After 20 years, are you still without..." + (show)
@sam31

Hi John,

Thanks so much for your quick response. After 20 years, are you still without pain and can you still walk/run normally?

You mentioned there are things I could do to help or delay the numbness. Are there exercises for this? Supplements. etc?

Thanks so much for the links, I'll check them out.

Blessings to all,

Rick

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Hi Rick, I'm still without pain from the neuropathy but do have some lower back problems not related to the neuropathy and have had my right knee replaced. My running days are long over and I have to be careful due to balance issues but I don't have any pain walking and still am able to drive OK. The supplement I take which help me some are the Protocol 525 supplements mentioned in my neuropathy journey. Weight loss, eating healthier and working at removing all sugar in my diet (fat chance of me going to zero sugar - I love chocolate) all have helped.

Here's another good discussion on exercise...
Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jul 5, 2021
In reply to @carlyschneider "Sure. Last June it started with just numbness in my left foot. No pain. By November..." + (show)
@carlyschneider

Sure. Last June it started with just numbness in my left foot. No pain. By November I had numbness in both feet with pain in my arches, electric shocks (only in right foot) burning sensations in my tailbone area. By Jan I was having sciatic pain down both legs. After EVERY test in the book to rule out things (minus spinal tap) I was just dx this May. In the last month, my symptoms have “quieted” but not gone away. Every day is a mystery of how I will feel.
If you don’t mind as well, What type of neuropathy are you dx with and what are your symptoms?

Jump to this post

Hello @carlyschneider, Welcome to Connect. I see that you recently joined and shared that you were diagnosed by a skin punch and an antibodies test which showed higher level of TS-HDS antibodies. Are you able to share what diagnosis you were given and what treatment was recommended or started?

REPLY
1 reply
avmcbellar | @avmcbellar | Jul 5, 2021
In reply to @shayes "Hello, my name is Sean, I’m from Weirton West Virginia. I’ve been suffering with type 2..." + (show)
@shayes

Hello, my name is Sean, I’m from Weirton West Virginia. I’ve been suffering with type 2 diabetes and neuropathy for several years . I’m trying to find out if there are other ways to heal this . I’ve been having all kinds of medication at it . And it is still getting worse .

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Hi Sean @shayes controlling your diabetes well with exercise and diet should not make your neuropathy worse. Is your hemoglobin A1C result low within range? Are you managing your diabetes with oral medication(s) or injections? I would talk to the physician who is managing your diabetes. Discuss what more you can do to stabilize your diabetic neuropathy. Is there a possibility of medications to help you with the neuropathy pain? Your physician would know of your medical history and would be better able to advise you. Wish you well.

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dipperlip1 | @dipperlip1 | Jul 5, 2021

I have neuropathy not caused by diabetes. Not sure how long I have it because I also suffer from Erythromelalgia which causes burning and redness in my feet and hands, sometimes ears. When the weather gets hot and humid it gets a lot worse, sometimes there is no particular reason. We went to Mayo in Rochester in 2006. They know what it is but no cure. Does anyone suffer from both of these conditions? For several years I contributed my burning legs and knees to that but once it effected my hands, forearms and sometimes upper arms I went to a Neurologist who confirmed that I also have neuropathy.

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