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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@rorygirl

weakness in legs

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Welcome @rorygirl, I think a lot of us with neuropathy have weakness in the legs. I don't think there is a magic pill for us when it comes to neuropathy but there are things we can do to improve our lives when we have neuropathy. A good source of information is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/.

Do you also have burning in your feet and legs, along with numbness in hands and feet like @randymor mentioned?

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@johnbishop

Welcome @rorygirl, I think a lot of us with neuropathy have weakness in the legs. I don't think there is a magic pill for us when it comes to neuropathy but there are things we can do to improve our lives when we have neuropathy. A good source of information is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/.

Do you also have burning in your feet and legs, along with numbness in hands and feet like @randymor mentioned?

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Hello, @rorygirl
I was just sitting here putting together some notes for a meeting I have with my neurologist this coming Friday. As I saw your post, I was underlining leg weakness as one of my chief concerns. I have idiopathic peripheral neuropathy. My symptoms are poor balance and an unsteady gait. Luckily, however, I have no pain. It does bother me that my legs will feel so "weary" (and "weary" is the right word), especially toward the end of the day. What I find puzzling is that these same legs can peddle away on my stationary bicycle without complaining. My question for my doctor is, Can it be my neuropathy alone that is sapping strength from my legs? In years past I would expect to be able to rebuild lost strength in muscles that have gone unused for a term. That no longer seems to be true.
I wish you success in managing your own leg weakness.
Best wishes,
Ray (@ray666)

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Is anyone else managing small fiber/peripheral neuropathy with diet? I am on the Auto Immune Protocol diet and wondered if anyone else has done that or how it went. I was recently diagnosed with Small Fiber Neuropathy. I have numbness, tingling and burning in the feet and fingers, with some loss of balance. I am 65.

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I was diagnosed with peripheral neuropathy. I went to a doctor that specializes in treating neuropathy. He did a treatment on my legs. It sort of helped but I’m a senior citizen on a very limited income and couldn’t afford the apparatus required to do the treatments at home. I also had a TKR in November and am having a feeling around my knee and behind my knee like there is a tight band around my knee. It isn’t above my knee it’s right on my knee. I also have had rods and screws put in my lower back and some kind of surgery on my SI joint. I am in horrible pain all the time. And I am a caregiver to my husband who has kidney cancer. He had his right kidney removed 20 years ago because of cancer and now it’s in his left kidney. He has decided to have his kidney removed and to go on dialysis. Other than all of that, we are fine. We both are trusting God through all of this.

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@ebero

Is anyone else managing small fiber/peripheral neuropathy with diet? I am on the Auto Immune Protocol diet and wondered if anyone else has done that or how it went. I was recently diagnosed with Small Fiber Neuropathy. I have numbness, tingling and burning in the feet and fingers, with some loss of balance. I am 65.

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Hi @ebero, Welcome to Connect. I do think diet is important when it comes to neuropathy, especially the elimination of sugar, processed foods and limiting carbs. I haven't looked into the Autoimmune Protocol Diet but thought I would share this link for others who are looking for more information on the diet:
--- AIP (Autoimmune Protocol) Diet: A Beginner's Guide: https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet.

There are a couple of other neuropathy diet related discussions you might find helpful while you wait for members with experience to respond:
--- Small Fiber Neuropathy: Is there a special diet I should be on?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-10/
--- Eliminating Foods for Neuropathy pain: https://connect.mayoclinic.org/discussion/neuropathy-pain-1/.

I am not on a specific diet but have made changes to eat healthier which I believe has helped some with my neuropathy although I don't have pain with my small fiber peripheral neuropathy. I just have the numbness.

How long have you been on the Autoimmune Protocol Diet? Have you noticed any difference in your symptoms?

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@psmlford817

I was diagnosed with peripheral neuropathy. I went to a doctor that specializes in treating neuropathy. He did a treatment on my legs. It sort of helped but I’m a senior citizen on a very limited income and couldn’t afford the apparatus required to do the treatments at home. I also had a TKR in November and am having a feeling around my knee and behind my knee like there is a tight band around my knee. It isn’t above my knee it’s right on my knee. I also have had rods and screws put in my lower back and some kind of surgery on my SI joint. I am in horrible pain all the time. And I am a caregiver to my husband who has kidney cancer. He had his right kidney removed 20 years ago because of cancer and now it’s in his left kidney. He has decided to have his kidney removed and to go on dialysis. Other than all of that, we are fine. We both are trusting God through all of this.

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I also have restless leg syndrome and that makes my neuropathy worse and my knee. At the end of the day I can hardly walk at all.

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@psmlford817

I was diagnosed with peripheral neuropathy. I went to a doctor that specializes in treating neuropathy. He did a treatment on my legs. It sort of helped but I’m a senior citizen on a very limited income and couldn’t afford the apparatus required to do the treatments at home. I also had a TKR in November and am having a feeling around my knee and behind my knee like there is a tight band around my knee. It isn’t above my knee it’s right on my knee. I also have had rods and screws put in my lower back and some kind of surgery on my SI joint. I am in horrible pain all the time. And I am a caregiver to my husband who has kidney cancer. He had his right kidney removed 20 years ago because of cancer and now it’s in his left kidney. He has decided to have his kidney removed and to go on dialysis. Other than all of that, we are fine. We both are trusting God through all of this.

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Hello @psmlford817, Welcome to Connect. I know it has to be difficult to be the primary caregiver for your husband when you have significant health issues of your own that are causing so much pain. I haven't had the tight band feeling around my knee with my TKR but others have posted about it in another discussion that you might find helpful:
--- Tight IT band after TKR: Does this tightness go away?: https://connect.mayoclinic.org/discussion/tight-it-band-after-tnr/.

The Foundation for Peripheral Neuropathy has a list of treatments that you might find helpful on their website here - https://www.foundationforpn.org/treatments/.

You mentioned the treatments at the doctor specializing in treating neuropathy sort of helped but it costs too much. That sounds similar to my experience when I first looked into a neuropathy clinic and what first brought me to Mayo Clinic Connect trying to find some answers. Have you discussed your pain with your primary care doctor to see if they may have some suggestions to help with pain relief?

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@johnbishop

Hi @ebero, Welcome to Connect. I do think diet is important when it comes to neuropathy, especially the elimination of sugar, processed foods and limiting carbs. I haven't looked into the Autoimmune Protocol Diet but thought I would share this link for others who are looking for more information on the diet:
--- AIP (Autoimmune Protocol) Diet: A Beginner's Guide: https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet.

There are a couple of other neuropathy diet related discussions you might find helpful while you wait for members with experience to respond:
--- Small Fiber Neuropathy: Is there a special diet I should be on?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-10/
--- Eliminating Foods for Neuropathy pain: https://connect.mayoclinic.org/discussion/neuropathy-pain-1/.

I am not on a specific diet but have made changes to eat healthier which I believe has helped some with my neuropathy although I don't have pain with my small fiber peripheral neuropathy. I just have the numbness.

How long have you been on the Autoimmune Protocol Diet? Have you noticed any difference in your symptoms?

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Thank you for the links, John!
After two serious falls in October, I was referred to a neurologist. I don't have diabetes. I was sent through the Brain MRI, skin punch biopsies, EMH nerve tests, blood work, etc, with an eventually SFN diagnosis, and a referral to a rheumatologist (next week.)
In November I went to my GP about knee pain, thought to be arthritis. He put me on the AIP diet. Within a week or so, I could walk up and down stairs again! If nothing else, that has been a big benefit. I was on the AIP through Thanksgiving....Christmas....traveling after Christmas....sigh. Now I'm trying to add foods back in but it is a slow process and sometimes the signs of good, acceptable or not good results are indistinct. I've noticed an uptick in numbness and pain in my feet and hands recently and after reading through your links I think it may be because I added a tiny amount (1 tsp each) of cocoa and instant coffee to hot water for the last week, trying for a hot drink while snowed in. I'll stop that and see if the problem improves. Thanks again.

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Thanks for invite. My problem is severe itching at night and in morning. It is sometimes unbearable. Sometimes it is accompanied by a hives rash and other times there is no rash. I put everything on that i have to little avail.
Any ideas would be appreciated
Ira

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@psmlford817

I also have restless leg syndrome and that makes my neuropathy worse and my knee. At the end of the day I can hardly walk at all.

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I have been using for 6 weeks Red Light Therapy by Novaalab cost me $224 is FDA . Has worked for my Neuropathy in my legs, my torn Labrium in my Shoulder

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