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?

My name is Kathy Vienna( I believe my on line tag is #kvienna)
I haven’t been on in a while. Just checking to see if there is any new information on CRPS. I explained before that I developed it in my rt. foot in 2007 after a major back surgery.(My 5th back surgery since I had harrington rod placed in 1969. The pain has now spread to my knee. Terrible nerve pain, weakness, numbness, balance issues. (I am now using a walker) I started developing numbness in my left foot this past January after I had surgery to place a rod in my left femur after developing an atypical femoral fracture from taking Prolia for osteoporosis . My pain dr. is sending me to a “Naturalist Dr.” who can help me decide what kind of medical marijuana I should try. I am taking so much medicine now that only “touches” the pain and for only a short time. I am hoping marijuana will due a better job.

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@kathyv

My name is Kathy Vienna( I believe my on line tag is #kvienna)
I haven’t been on in a while. Just checking to see if there is any new information on CRPS. I explained before that I developed it in my rt. foot in 2007 after a major back surgery.(My 5th back surgery since I had harrington rod placed in 1969. The pain has now spread to my knee. Terrible nerve pain, weakness, numbness, balance issues. (I am now using a walker) I started developing numbness in my left foot this past January after I had surgery to place a rod in my left femur after developing an atypical femoral fracture from taking Prolia for osteoporosis . My pain dr. is sending me to a “Naturalist Dr.” who can help me decide what kind of medical marijuana I should try. I am taking so much medicine now that only “touches” the pain and for only a short time. I am hoping marijuana will due a better job.

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Marijuana will help. Maybe not in the ways you are hoping. There are many types available. I find green weed, the kind you roll in a joint works great for many people and others do well with edibles. CBD Oil benefits many others need the CBD and THC Oil. I personally use concentrates called shatter. Here is how it works for me. I have a genetic wasting neuropathy and I find it relaxes me and allows my prescription meds do their job better. If you are considering adding Marijuana to your regime remember there are many ways to use it and it works different for each person so don’t be afraid to keep trying until you find what works best for you.

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Hi everyone, I believe I have neuropathy in my feet but my orthopedic doctor has diagnosed it as Reynaud’s. But th skin on my feet in winter or when it’s cold do not appear to whiten. Is his diagnosis incorrect?

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Hello @psearby17 – Welcome to Mayo Connect. We are happy you found us. Connect is a good place to ask your health related questions and learn what other Connect members with similar health concerns do for treatments. I have peripheral neuropathy (PN) in both feet but I believe the only way to tell whether or not you have PN is to have an EMG test to check for nerve damage. Mayo Clinic has a good overview of Reynaud’s disease here:
http://www.mayoclinic.org/diseases-conditions/raynauds-disease/basics/symptoms/con-20022916
Also here is an easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin: https://youtu.be/8nrv7lRvvwU

John

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@bburleson1

Guess what guys, I have POEMS blood plasma disorder that causes neuropathy in my hands and feet..I’ve found that Vicks Vapor Rub has a lot of uses..

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Hi @bburleson1
I encourage you to start a new discussion about living with POEMS syndrome in the Blood Cancers & Disorders group https://connect.mayoclinic.org/group/blood-cancers-disorders/ to help connect people living with this rare disorder.

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@johnbishop

Hello Delane @homdee3041, welcome to Mayo Connect. We are happy that you found us. Connect is a good place to ask questions, share your health concern and learn what others with similar health problems are doing for treatment. Are you able to share a little more about your neuropathy? Have you seen a neurologist and received a diagnosis?

John

John

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Thank you for your reply. This is a frightening condition. I am active and have been so active all my life, people tell me I may end up in a wheelchair like them. obviously people whom I have met who are in wheelchairs.

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Thank you so much for your reply. I an seeing a neurologist and am on Nadnlol ( RX) It seems to help now but have had to increase the dosage. I pray you are doing better

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@johnbishop

Hello Delane @homdee3041, welcome to Mayo Connect. We are happy that you found us. Connect is a good place to ask questions, share your health concern and learn what others with similar health problems are doing for treatment. Are you able to share a little more about your neuropathy? Have you seen a neurologist and received a diagnosis?

John

John

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Delane – Well, the people telling you where you might end up lacks a positive spin, I think. So here’s a different take on it – maybe soon medical science will accomplish another miracle and PN and its “similars” will be a thing of the past. In the meantime, we all may end up in a wheelchair at some point. At the risk of seeming “Pollyanna”ish, I am glad someone invented wheelchairs so when we find them necessary, we can go on enjoying our lives, eating good food, laughing with friends and hugging loved ones. You are so right – it is a frightening disease but be assured with as many of us as are affected, someone is trying to figure out how to fix it. I hope it’s soon, though – I’m 81 and I’d like to see how much of all this input is making some kind of sense to those whose job it is to stop it.

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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

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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Hello Birdie (@bookworm), Welcome to Mayo Connect. We are glad you found us. Connect is a good place to ask questions, share your health concerns and learn what other Connect members with similar health concerns are doing for treatments. I would recommend reading through this discussion starting from the first post (just go to the top and click First at the bottom of the discussion description. If you see a post by a Connect member and want to ask them a question, just use their Connect name which has the “@” sign in front of it.

I have idiopathic small fiber peripheral neuropathy along with a few other health issues. You can read my story here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985
Can you share what you are doing to treat your neuropathy and other symptoms?

John

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@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

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@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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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.

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@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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@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

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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.

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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.

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