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?

@tys

Thanks for the quick respons .
Nothing, no supplements , just the 'normal' pills for a 75 year old male 🙂 (statine / blood pressure)
cheers, Henk

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Interesting, thanks for the additional information Henk @tys. I took statins for blood pressure for quite a few years when I was in my 40s then I did a Mayo Clinic heart study and they determined my high BP was caused by hypertension and changed my meds to Spironolactone (aldosterone receptor antagonists). I had always thought in the back of my mind that my idiopathic small fiber peripheral neuropathy was caused by statins and did a lot of research on them but it could just be a case of genetics and old age since I'm 77 🙂

The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/
Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1
Statins Have Unexpected Effect on Pool of Powerful Brain Cells
https://www.urmc.rochester.edu/news/story/2051/statins-have-unexpected-effect-on-pool-of-powerful-brain-cells.aspx
Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8

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@johnbishop

Interesting, thanks for the additional information Henk @tys. I took statins for blood pressure for quite a few years when I was in my 40s then I did a Mayo Clinic heart study and they determined my high BP was caused by hypertension and changed my meds to Spironolactone (aldosterone receptor antagonists). I had always thought in the back of my mind that my idiopathic small fiber peripheral neuropathy was caused by statins and did a lot of research on them but it could just be a case of genetics and old age since I'm 77 🙂

The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/
Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1
Statins Have Unexpected Effect on Pool of Powerful Brain Cells
https://www.urmc.rochester.edu/news/story/2051/statins-have-unexpected-effect-on-pool-of-powerful-brain-cells.aspx
Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8

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John,
I am beyond grateful for the links you have posted re: statins/potential for toxicity. Darryl

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@constitution

John,
I am beyond grateful for the links you have posted re: statins/potential for toxicity. Darryl

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Glad to help!

Liked by rwinney

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@sunnyflower

Thanks Jim. I live in the Seattle area and am a Kaiser patient. Used to be Group Health Cooperative of Puget Sound. My family and myself have wanted me to go to Mayo for years. My daughter used to live in Rochester and has some connections w/ some doctors. Today I did a little research on Benzodiazapines and they do work for nerve pain. I have several types of neuropathy. I do believe I have autonomic by definition. So do you receive your care at Mayo? Any idea the cost to have a work-up w/ Neurology? I have a zillion specialists. I don't know what they'd do with me LOL! I tell my docs that I'm going to be their worst nightmare but not to worry,m they'll grow to love me! I have always been disturbed to my core about any suffereing. I mean I lose sleep. For way too many years to count. I know God has His purpose in everything and can see from beginning to end. I just have to pray, then give it to the Lord or it will eat me up. Many blessings, Sunny

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@sunnyflower I live in central Oregon, a long way to any Mayo clinic. We have some good doctors here, but there are things that are out of their scope of practice. I went to OHSU hospital in Portland. That's Oregon Health Sciences University. I had a few tests done there to try to pin down where I stood with neuropathy. They didn't tell me much that I didn't already know, so that gave me more confidence in the local neurologist. One of my sisters lives in a suburb of Minneapolis, so I could stay with her if I ever need to visit Mayo.

Jim

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Thx Jim. I am familiar with OSHU etc. Neuropathy does the strangest things and that's a gross understatement! Warm regards Sunnyflower

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@sunnyflower

Hello. I have neuropathy pn from head to toe. 67 yr. old female, myriad of diseases and conditions. Toxic meds. My pn is intractable and unrelenting. At times I am fighting for my sanity and literally crawling out of my skin! Burn, sting, cold. Sit with ice on knees where it can hurt more there but is everywhere. Hands in rolled up heat pad for Raynaud's disease. Tried Gabapentin, super sub-therapeutic dose (100mg. three times daily until 200mg. three times daily due to unwanted side-effects; felt detached, life surreal. Vision problems; double throughout the day and pattern in vision field. Discontinued it to try Lyrica. Worse side-effects so went back to Gabapentin. Less side-effects. Worked fair for pn at first but now, 2 weeks later after resuming, pn worsening daily. Still at subtherapeutic dose but afraid to take more due to side-effects. I'm a medical person/dective. Besides the severe sting/burn/numb, I can itch too but not feel the back scratcher due to numbness. Go figure. Fascinating! Even have same Sxs in girl parts. Have auto-immune Dz; mixed connective tissue. Most organs and 3 glands effected. Have Fibro, it's it's own nightmare. And other painful conditions. Am on morphine but not much. Have tapered down a lot on my own even though I don't have to. Tried authentic CBD. No relief. I'm fascinated by the degree of pn and how I get through it. It's by the grace of God. Faith. But wonder if anyone else literally crawls out of their skin and fights for their sanity due to the intensity of the pn. There are a lot of tears. My Dx is small peripheral neuropathy; everything outside the spinal cord nerves I guess. Anyone out there with my experience? Thank you!

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Hi @sunnyflower Like you I am still learning how to use and navigate around in Connect. I ran across one of your posts earlier but did not see this one (in which you lay out your situation in detail) as I have not been monitoring this particular discussion. My wife has PN not myself, but I try to stay on top of internet info for her as she is computer/internet challenged bigtime. And she has limited bandwidth to do much but deal with her pain. She is 73 and neuropathy started in 2014 due to chemotherapy. She had an awful time with gabapentin with the weird side effects somewhat like you had. Other than that she has stringently avoided drugs for the pain. She has never believed in them, never trusted them to do any good (outside of marijuana). She keeps a fan blowing on her feet 24/7. She occasionally soaks her feet, sometimes in cold water and sometimes in water that is as hot as she can stand, which she says wears out the nerves enough that they stop firing long enough for her to get to sleep (sometimes). None of the other things she has tried has given her any meaningful relief, except marijuana as I said, which is still illegal in Tennessee where we are so she can't get the medical kind which she would prefer because she is not interested in the high (most of the time). The latest thing she is doing is something called Penetres which I posted about on another discussion (search the word penetrex if you are interested). She has been getting some relief from it. Not a ton, but some so far. What gets me about your story and other's also is first of all how many of you PN sufferers are out there, and also how non-stop this pain is. And there is nothing for anyone to do about it. How can so many millions of people be in this same boat and the only things doctors are giving to people for it are essentially useless? It's pathetic. Anyway, just wanted to throw my 2 cents your way to let you know I feel for you. No, I do not have the pain, but I feel like I am my wife's one good arm, I am that close to her, and with her every step of the way in this awful nightmare. And I feel her frustration and yours at this prison of pain you find yourselves in. Your faith which you mention is really the most important thing you can have aside from a cure. I believe there is a reason for everything in life and that God is the only being that is with you when no one else is. Amazing how much strength you can derive from that and I am glad both you and my wife have that to lean on. Take care, hoping for the best for you, my wife and all other PN sufferers.

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@jesfactsmon

Hi @sunnyflower Like you I am still learning how to use and navigate around in Connect. I ran across one of your posts earlier but did not see this one (in which you lay out your situation in detail) as I have not been monitoring this particular discussion. My wife has PN not myself, but I try to stay on top of internet info for her as she is computer/internet challenged bigtime. And she has limited bandwidth to do much but deal with her pain. She is 73 and neuropathy started in 2014 due to chemotherapy. She had an awful time with gabapentin with the weird side effects somewhat like you had. Other than that she has stringently avoided drugs for the pain. She has never believed in them, never trusted them to do any good (outside of marijuana). She keeps a fan blowing on her feet 24/7. She occasionally soaks her feet, sometimes in cold water and sometimes in water that is as hot as she can stand, which she says wears out the nerves enough that they stop firing long enough for her to get to sleep (sometimes). None of the other things she has tried has given her any meaningful relief, except marijuana as I said, which is still illegal in Tennessee where we are so she can't get the medical kind which she would prefer because she is not interested in the high (most of the time). The latest thing she is doing is something called Penetres which I posted about on another discussion (search the word penetrex if you are interested). She has been getting some relief from it. Not a ton, but some so far. What gets me about your story and other's also is first of all how many of you PN sufferers are out there, and also how non-stop this pain is. And there is nothing for anyone to do about it. How can so many millions of people be in this same boat and the only things doctors are giving to people for it are essentially useless? It's pathetic. Anyway, just wanted to throw my 2 cents your way to let you know I feel for you. No, I do not have the pain, but I feel like I am my wife's one good arm, I am that close to her, and with her every step of the way in this awful nightmare. And I feel her frustration and yours at this prison of pain you find yourselves in. Your faith which you mention is really the most important thing you can have aside from a cure. I believe there is a reason for everything in life and that God is the only being that is with you when no one else is. Amazing how much strength you can derive from that and I am glad both you and my wife have that to lean on. Take care, hoping for the best for you, my wife and all other PN sufferers.

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Has she tried back stimulator! I had one installed 3 days! Medtronic. Have spinal stenosis with neuropathy in both feet! Basically house bound before! Cancer survivor! Stimulator was outpatient! I control most of pain with controller

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@wilcy

Has she tried back stimulator! I had one installed 3 days! Medtronic. Have spinal stenosis with neuropathy in both feet! Basically house bound before! Cancer survivor! Stimulator was outpatient! I control most of pain with controller

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@wilcy can you talk a little more about your stimulator? So it is a spinal cord stimulator? When was it inserted? How much pain does it eliminate and how long has it been helping you? Have you had any complications with it? Another Connect poster @jimhd has described getting one and having significant pain reduction for between one and two years but says he no longer gets relief, so I would be interested in how long it has been helping you. Thanks, Hank

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I am 69! The. Spinal stimulator was installed 3 days ago! Did trial run for 3 days before permanent was put in back! Think about 80% reduction in pain! Can atleast go to stores! Two wires run up my spine and battery pack was put in butt cheek! I have had rods put in back, shots,drugs! Think it made it worse! Go to you tube! May work week or 10 years! Just 2 years worth be sweet! Am increasing my walking distance to loose about 50 lbs! Should help with stenosis and neuropathy! They have been around for several years!

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@wilcy

I am 69! The. Spinal stimulator was installed 3 days ago! Did trial run for 3 days before permanent was put in back! Think about 80% reduction in pain! Can atleast go to stores! Two wires run up my spine and battery pack was put in butt cheek! I have had rods put in back, shots,drugs! Think it made it worse! Go to you tube! May work week or 10 years! Just 2 years worth be sweet! Am increasing my walking distance to loose about 50 lbs! Should help with stenosis and neuropathy! They have been around for several years!

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Has anyone tried a Peripheral Nerve Stimulator device?

Liked by steeldove

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I have tried a device called the Rebuilder. It is supposed to retrain your nerves to operate normally, instead of sending pain signals. I have tried it off and on for over a year, and I cannot say that it helps. I have terrible burning pain in my feet and hands, and it does feel a little better when I am doing it (only 30 minutes, twice a day, max), but it does not help when it is not on. A physical therapist used it and then I bought one (about $1k). You can google it and find out about it.

Liked by steeldove, kazz30

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@cwallen9 The Rebuilder looks like a device used externally. A Peripheral Nerve Stimulator device is installed in the body.

Liked by steeldove

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@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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I have had the burning in my buttock and feet since I had back surgery approx. 7 yrs. ago. I have been to many doctors and clinics to no success. Ice does help and then I take percocet with gabapentin . I always get up each morning and run cold water over my feet or soak them in cold water. That does seem to help too. When this doesn't help I'm am in tears. Very hard to sit.

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Stretch your buttocks cheeks! Go to you tube

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@wilcy

I am 69! The. Spinal stimulator was installed 3 days ago! Did trial run for 3 days before permanent was put in back! Think about 80% reduction in pain! Can atleast go to stores! Two wires run up my spine and battery pack was put in butt cheek! I have had rods put in back, shots,drugs! Think it made it worse! Go to you tube! May work week or 10 years! Just 2 years worth be sweet! Am increasing my walking distance to loose about 50 lbs! Should help with stenosis and neuropathy! They have been around for several years!

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@wilcy was the surgery for the stimulator very difficult or was it easy and straightforward? Will be interested to know more details about how it does after you have had it in a while. Hopefully the pain relief stays with you a long time. Good luck! Hank

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