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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.

zeavalden | @zeavalden | May 13 12:04pm

I am wheelchair bound, having had polio in 1945 and finally becoming tired of holding myself up with one Lofstrand, then two Lofstrand canes...eight years ago. In 2020 I began having intense itching on the soles of my feet at night (feet elevated due to daytime swelling from not walking anymore).
Three MDs not having a clue, I now take responsibility for my foot weirdness such as taking turns with heat-and-itching and icy-cold, one foot red and one blue ... then switching off to the opposite foot a day or two later.
I have tried the basic gabapentin-type medications and found myself on the floor unable to get back in the wheelchair.
I bought a small freezer to place next to the recliner I sleep in to keep home-made ice packs to change out during the night, take no medications for the condition; and am researching food allergies such as peanut butter and tomatoes, and adding cinnamon and black pepper to my intake.
Once every month or so I may have one 8-hour day of relief; this month I had 5 days and nights free of symptoms. Thinking I'm on to something gives me hope!

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sbrown293 | @sbrown293 | May 14 9:16am
In reply to @suchadoc "I am not too good using technology. But, I do keep trying. ;-) I am wondering..." + (show)
@suchadoc

I am not too good using technology. But, I do keep trying. 😉 I am wondering if anyone can tell me about the tests that confirm neuropathy. If they cannot cure or heal it (no treatment for it) why subject myself to such a painful test or tests? I don't want gabapentin (sp) because I understand we can build up a tolerance to it, causing a need to increase the mgs. I don't want that. I am finding that neuropathy affects my balance and my gait. I feel that I walk like a toddler walks. It's humiliating! Has anyone really had any improvement with PT?

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Welcome to Mayo Clinic Connect. You have come to the right spot for information. Folks are great to share their experiences. Neuropathy is horrible. I watched my late husband suffer with neuropathy and Raynaud’s syndrome.

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1 reply
peterj1 | @peterj1 | May 14 11:51am
In reply to @sbrown293 "Welcome to Mayo Clinic Connect. You have come to the right spot for information. Folks are..." + (show)
@sbrown293

Welcome to Mayo Clinic Connect. You have come to the right spot for information. Folks are great to share their experiences. Neuropathy is horrible. I watched my late husband suffer with neuropathy and Raynaud’s syndrome.

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Thank you very much. I look forward to working myself through this many entries.
Georg.

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pacarnut | @pacarnut | May 15 11:12am

I have been diagnosed with generalized sensorimotor polyneuropathy. My neurologist has done a comprehensive workup lots of lab, MRIs of total spine with no answer. I was in Viet Nam some 50 years ago I am wondering if agent orange might be involved. Any one have any experience or thoughts on that?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 15 11:34am
In reply to @pacarnut "I have been diagnosed with generalized sensorimotor polyneuropathy. My neurologist has done a comprehensive workup lots..." + (show)
@pacarnut

I have been diagnosed with generalized sensorimotor polyneuropathy. My neurologist has done a comprehensive workup lots of lab, MRIs of total spine with no answer. I was in Viet Nam some 50 years ago I am wondering if agent orange might be involved. Any one have any experience or thoughts on that?

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Welcome @pacarnut, You are not alone with the agent orange neuropathy side effects. Here's a link to comments by other Vietnam vets on the topic - https://connect.mayoclinic.org/search/comments/?search=agent%20orange%20+neuropathy.

The VA also has a public health article on the topic here
-- Peripheral Neuropathy and Agent Orange: https://www.publichealth.va.gov/exposures/agentorange/conditions/peripheral_neuropathy.asp

Are you being seen by the VA doctors or neurologists?

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mlmbhsrnpb3 | @mlmbhsrnpb3 | May 15 3:28pm
In reply to @johnbishop "Welcome @suchadoc, You sound a lot like me years ago when I first started having neuropathy..." + (show)
@johnbishop

Welcome @suchadoc, You sound a lot like me years ago when I first started having neuropathy symptoms only I didn't have pain as a symptom, just some numbness and tingling. My wife told me I walked like an old man even when I was in my 50s and younger. The answer is different for each of us as to why we would want to have the tests and get a diagnosis. Although there is no cure, there are treatments that may help with the pain. Neuropathy Commons has a good explanation of tests that are used here - https://neuropathycommons.org/diagnosis/diagnosing-peripheral-neuropathy.

I myself didn't think the EMG and nerve conduction tests were painful but they were a little uncomfortable. I didn't have a skin punch biopsy so can't share any experience. There are many things you can do to help improve your quality of life. I do think PT can help with balance issues. I've had a few sessions that gave me exercises I can do at home that help some with balance. You might find some good suggestions on the Foundation for Peripheral Neuropathy website here - https://www.foundationforpn.org/living-well/.

There are quite a few discussions on what helps with neuropathy. Here is a link to the discussions and comments from other members - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20what%20helps.

Can you share a little more about your neuropathy symptoms?

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My feet and legs are becoming numb , as well as my arms.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 15 3:38pm
In reply to @mlmbhsrnpb3 "My feet and legs are becoming numb , as well as my arms." + (show)
@mlmbhsrnpb3

My feet and legs are becoming numb , as well as my arms.

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Welcome @mlmbhsrnpb3, I see from your earlier posts that you have tried red light therapy and it helped some and you also mentioned the doctors thought you had IBS. Have you been diagnosed with a form of neuropathy?

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1 reply
mlmbhsrnpb3 | @mlmbhsrnpb3 | May 15 3:43pm
In reply to @johnbishop "Welcome @mlmbhsrnpb3, I see from your earlier posts that you have tried red light therapy and..." + (show)
@johnbishop

Welcome @mlmbhsrnpb3, I see from your earlier posts that you have tried red light therapy and it helped some and you also mentioned the doctors thought you had IBS. Have you been diagnosed with a form of neuropathy?

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Not specific but caused by stenosis in the spine.

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gregd1956 | @gregd1956 | May 16 3:34pm

. I’m here to… sometimes, like this, I write longer than other folks. Well, it’s here… 🙂

12 years ago I had a bicycle accident that caused me a TBI. I lost 80% of my brain… think about a good or bad changes.

Alright, pass my TBI is here on the pain in back my legs & lost of feeling on a big part from my feet. What do I do? My unbalanced has killed my things like walking outside with my doggies, a few times a week; cutting grass - front & back for a 2.5 hour per week; fixing/cutting/cleaning bushes and other things inside or outside…

Why did it fall my rear ends in our garage for wooden steps? That killed me 2 years ago and lost my physical things that I did. 4 weeks ago, I had a (losing the word, daggone) surgery (finally) from my top of 1 rear end and to the bottom of my back. My Doctor A. had a choice for me: (1) add some meds that, maybe could help me to get rid of pain >or< (2) seeing the pictures of what he could - one little part of my (daggoneit, losing the next word coming) large nerve right between the two L6-L7 (sorry, I can’t k ow the L something) and moved that nerve out from my back part. My pain is gone! Now, I try to exercise from my rear end to the bottom feet… stretch, move from one part to the other..

Yes, no pain, but fix my lower body. ❤️

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gramma206 | @gramma206 | May 17 12:16am

I have chemotherapy-induced peripheral neuropathy in my hands and feet. Last year it was so severe that I ended up in a nursing home/rehab facility for 3 months. I've been working with physical therapists since then and am getting stronger. I can put up with the pain easier than the bilateral foot drop which affects my balance. I wear large AFOS on both feet to keep me from tripping over my toes. Would love to hear from people with similar issues and successful treatments.

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