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
Jim, Volunteer Mentor | @jimhd | Sep 21, 2017
In reply to @bookworm "I'm Birdie. I have neuropathy, primarily numbness, in my feet from a 10 year delayed diagnosis..." + (show)
@bookworm

I'm Birdie. I have neuropathy, primarily numbness, in my feet from a 10 year delayed diagnosis of pernicious anemia. When B12 is not absorbed into the body over a long period of time, nerve damage occurs, and some is not reversible. I also get shooting nerve "zaps", some quite forceful and various burning and itching in legs, hands, and feet. Other damage is the result of two meniscus surgeries, one on each knee, and moderate to severe osteoarthritis in my neck. Recently I have developed a burning mouth as well.

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@bookworm

Have you considered a spinal cord stimulator? I had an implant in June, and it has relieved up to 80% of the burning pain in my feet. It doesn't treat numbness, tingling or balance problems, but the pain was by far the worst part of my peripheral neuropathy. Are you getting any treatment for your symptoms?

Jim

REPLY
confused1955 | @confused1955 | Sep 22, 2017
In reply to @bookworm "I'm Birdie. I have neuropathy, primarily numbness, in my feet from a 10 year delayed diagnosis..." + (show)
@bookworm

I'm Birdie. I have neuropathy, primarily numbness, in my feet from a 10 year delayed diagnosis of pernicious anemia. When B12 is not absorbed into the body over a long period of time, nerve damage occurs, and some is not reversible. I also get shooting nerve "zaps", some quite forceful and various burning and itching in legs, hands, and feet. Other damage is the result of two meniscus surgeries, one on each knee, and moderate to severe osteoarthritis in my neck. Recently I have developed a burning mouth as well.

Jump to this post

I don't have any of those symptoms. Just loss of use of thumb forefinger and middle finger and burning pain in those fingers. Period, nothing else that wasn't a pretty existing spinal conditions.

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Sep 23, 2017
In reply to @bookworm "I'm Birdie. I have neuropathy, primarily numbness, in my feet from a 10 year delayed diagnosis..." + (show)
@bookworm

I'm Birdie. I have neuropathy, primarily numbness, in my feet from a 10 year delayed diagnosis of pernicious anemia. When B12 is not absorbed into the body over a long period of time, nerve damage occurs, and some is not reversible. I also get shooting nerve "zaps", some quite forceful and various burning and itching in legs, hands, and feet. Other damage is the result of two meniscus surgeries, one on each knee, and moderate to severe osteoarthritis in my neck. Recently I have developed a burning mouth as well.

Jump to this post

@confused1955

A spinal cord stimulator sends, or interrupts the messages sent from the brain to whatever nerves are involved. It can treat nerve pain in the feet, hands, head, back and other places. For real information, Google Burst DR.

Jim

REPLY
sevey41 | @sevey41 | Sep 23, 2017

Hi I am new to this sight I live in Oregon. I am now 76 years young.. I have suffered with leg pain all my life they called it growing pains. I used to just periodically have leg aches but not all the time. As I have aged it's gotten worse and worse. When I turned 60 noticed new system numbness in my feet along with pain. My diagnosis is severe restless legs(take Myrapex for this) and Nuropathy caused from my back they think I do not have diabetes my circulation is good my bones strong. I deal with this daily I mostly wear tennis shoes with good support,if I wear any other type shoe even really good ones I have leg aches and terrible pain and feet. I have been to many Drs all kinds no one knows what causes the naropothy but agreed I have it. Lots of arthritis in my back they had me on strong pain pills but do not like them. Just manage by being active but pain every single day is what I live with. There is no drug or treatments acupuncture, shots, physical therapy every kind of drug including cannabus every kind of medicine but nothing helps. Wonder if anyone else has this same problem? Myrapex helps but I am OCD and the medicine makes my OCD so much worse.

REPLY
10 replies
venki | @venki | Sep 23, 2017

Mam, I am a CSVD patient with Ulnar Neuropathy problem also. Now my left leg swelling, numbness have healed but I don't have sleep during the nights with severe headache persists right through the day. Doctors after seeing the MRI Images say nothing to worry and have prescribed sleeping dosages. Kindly advice whether my problem in sleeping and continuing headache will lead to some other problems. Venkatesan.

REPLY
3 replies
sstouten | @sstouten | Sep 23, 2017

Hello; I am new here and have been dealing with Neuropathy pain for several years. I go to a rheumatologist and take several medications but still get very little relief. Any tips from others would be appreciated.

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2 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Sep 23, 2017
In reply to @sevey41 "Hi I am new to this sight I live in Oregon. I am now 76 years..." + (show)
@sevey41

Hi I am new to this sight I live in Oregon. I am now 76 years young.. I have suffered with leg pain all my life they called it growing pains. I used to just periodically have leg aches but not all the time. As I have aged it's gotten worse and worse. When I turned 60 noticed new system numbness in my feet along with pain. My diagnosis is severe restless legs(take Myrapex for this) and Nuropathy caused from my back they think I do not have diabetes my circulation is good my bones strong. I deal with this daily I mostly wear tennis shoes with good support,if I wear any other type shoe even really good ones I have leg aches and terrible pain and feet. I have been to many Drs all kinds no one knows what causes the naropothy but agreed I have it. Lots of arthritis in my back they had me on strong pain pills but do not like them. Just manage by being active but pain every single day is what I live with. There is no drug or treatments acupuncture, shots, physical therapy every kind of drug including cannabus every kind of medicine but nothing helps. Wonder if anyone else has this same problem? Myrapex helps but I am OCD and the medicine makes my OCD so much worse.

Jump to this post

Welcome to Connect, @sevey41 .

I have neuropathy, as well. It's most noticeable in my feet and almost to my knees. I tried every medication, but not acupuncture. I've been taking morphine sulfate and Cymbalta for a few years. In June, I had a spinal cord stimulator implant to relieve the pain in my feet, and the pain is about 80% better. Now, I'm almost tapered off the morphine and Cymbalta, and the pain hasn't gotten worse.

Have you considered having a spinal cord stimulator implant? I'm certainly an advocate for it. The new Burst DR doesn't cause any vibrating sensation and is MRI compatible. In the past decade of my 67 years, I've had several MRIs, so that was a consideration for me.

Yesterday, the neurologist took 3 puncture skin biopsies to determine what type of neuropathy I have. The only pain involved was the shot of numbing medication. It will take 2 weeks to get the test results back, and I think it will help him know better how to treat me, and it may tell me what to expect as far as the progression is concerned.

If you haven't already, these are a couple of things you might talk with your neurologist about. One thing that helps me is Lidocaine cream. It numbs the pain for a couple of hours, but it's quite expensive, so I mostly only use it at bedtime. Someone I know swears by Blue Emu. I hope your neurologist will do everything that's available to help you.

Jim

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Sep 23, 2017
In reply to @venki "Mam, I am a CSVD patient with Ulnar Neuropathy problem also. Now my left leg swelling,..." + (show)
@venki

Mam, I am a CSVD patient with Ulnar Neuropathy problem also. Now my left leg swelling, numbness have healed but I don't have sleep during the nights with severe headache persists right through the day. Doctors after seeing the MRI Images say nothing to worry and have prescribed sleeping dosages. Kindly advice whether my problem in sleeping and continuing headache will lead to some other problems. Venkatesan.

Jump to this post

Welcome to Connect, Ventakesan. @venki .

Have you visited a neurologist or a pain specialist? Both have been very helpful to me. Please read what I wrote above to a woman, @sevey41 , who might share some of your problems. If the doctor said nothing to worry from the MRI, I would ask him/her to tell me exactly what he DID see.

You can also read what others in the group have said about headaches and migraines in one of the discussions.

Jim

REPLY
gailfaith | @gailfaith | Sep 23, 2017
In reply to @sevey41 "Hi I am new to this sight I live in Oregon. I am now 76 years..." + (show)
@sevey41

Hi I am new to this sight I live in Oregon. I am now 76 years young.. I have suffered with leg pain all my life they called it growing pains. I used to just periodically have leg aches but not all the time. As I have aged it's gotten worse and worse. When I turned 60 noticed new system numbness in my feet along with pain. My diagnosis is severe restless legs(take Myrapex for this) and Nuropathy caused from my back they think I do not have diabetes my circulation is good my bones strong. I deal with this daily I mostly wear tennis shoes with good support,if I wear any other type shoe even really good ones I have leg aches and terrible pain and feet. I have been to many Drs all kinds no one knows what causes the naropothy but agreed I have it. Lots of arthritis in my back they had me on strong pain pills but do not like them. Just manage by being active but pain every single day is what I live with. There is no drug or treatments acupuncture, shots, physical therapy every kind of drug including cannabus every kind of medicine but nothing helps. Wonder if anyone else has this same problem? Myrapex helps but I am OCD and the medicine makes my OCD so much worse.

Jump to this post

@ jimhd , gailtfaith here. I notice there are many topical things that people are referring to on Connect for their neuropathy, but I don't remember seeing anyone using Arnica (Arnicare) by Boiron. It is NOT a Rx item. I've even seen it for sale in the grocery store along with other analgesics. . Some years ago someone mentioned that product to me and I use it, BUT I do NOT have a neuropathy. Just back pain and for other misc pain. I only have used the cream, but I just learned that it also comes in a gel formulation. My local pharmacist only carries the gel so that may give some indication which formulation works the best.

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Sep 23, 2017
In reply to @sevey41 "Hi I am new to this sight I live in Oregon. I am now 76 years..." + (show)
@sevey41

Hi I am new to this sight I live in Oregon. I am now 76 years young.. I have suffered with leg pain all my life they called it growing pains. I used to just periodically have leg aches but not all the time. As I have aged it's gotten worse and worse. When I turned 60 noticed new system numbness in my feet along with pain. My diagnosis is severe restless legs(take Myrapex for this) and Nuropathy caused from my back they think I do not have diabetes my circulation is good my bones strong. I deal with this daily I mostly wear tennis shoes with good support,if I wear any other type shoe even really good ones I have leg aches and terrible pain and feet. I have been to many Drs all kinds no one knows what causes the naropothy but agreed I have it. Lots of arthritis in my back they had me on strong pain pills but do not like them. Just manage by being active but pain every single day is what I live with. There is no drug or treatments acupuncture, shots, physical therapy every kind of drug including cannabus every kind of medicine but nothing helps. Wonder if anyone else has this same problem? Myrapex helps but I am OCD and the medicine makes my OCD so much worse.

Jump to this post

Gail, @gailfaith . I do remember someone mentioning Arnica about 4 years ago, but I don't think I ever tried it. I think that I'll get some tomorrow when I go to church. Thanks for the reminder.

Jim

REPLY
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