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.

@johnbishop

Ok, after seeing this video, I definitely don't have CIDP but now a question what is GBS?

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@johnbishop

@lecowing, I found the article after looking deeper into possible causes for my neuropathy and other things I could work on to help. That along with learning more about low carb healthy fat eating along with intermittent fasting was when I started thinking there was a relationship between the metabolic syndrome and neuropathy. There is another discussion on the low carb eating and why here:

-- Low-carb healthy fat living. Intermittent fasting. What’s your why?
https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

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Thank you for the added information.

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@26sabrina

Ok, after seeing this video, I definitely don't have CIDP but now a question what is GBS?

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Ok, I didn't recognize the initials. I know what that is.
I am hoping for some better information on relief from the symptoms.

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Hello, this is actually two people. I have had chemo induced neuropathy for the past 13 years, worse now, since a return of cancer in 2019 and a second round of chemo. My husband has peripheral neuropathy in his feet and lower legs of unknown origin, probably age related (74 years old). We are encouraged to join the conversation and hope to find some strategies to help.

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@keithandsue

Hello, this is actually two people. I have had chemo induced neuropathy for the past 13 years, worse now, since a return of cancer in 2019 and a second round of chemo. My husband has peripheral neuropathy in his feet and lower legs of unknown origin, probably age related (74 years old). We are encouraged to join the conversation and hope to find some strategies to help.

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Good evening @keithandsue, welcome to the Neuropathy group on Connect. This is the first time I have had the opportunity to welcome a couple. Obviously, you two have discovered a number of issues that you shared and then also found symptoms that only affected one of you.

In 13 years what strategies have been the most helpful for Keith? What symptoms have been similar for both of you? Do you both have the same neurologist or clinical specialist? Hopefully, that will mean you are both on the same page and can help each other.

You may already know about the following two referral links. If not, it might be worthwhile to see what fits your individual situation.

Neuropathy Commons
https://neuropathycommons.org/

Foundation for Peripheral Neuropathy
https://www.foundationforpn.org/

Do each of you have different questions to ask? You can include them in the same response or separate them. We'll try to keep Keith's separate from yours Sue.

May you both be free of suffering and the causes of suffering.

Chris

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I jus joined the group too and thank you for the sites for learning more about neuropathy.

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Thank you, Colleen. I was diagnosed with PN a couple years ago at Mayo Clinic and it has become more severe. I feel fortunate to only have to deal with it at night, when I have severe leg and foot cramps that continually interrupt my sleep. For the past week, I have been going to a chiropractor, who has completely eliminated the cramps with spinal adjustments, Tens treatments and the nightly application of a roll-on solution called Muscle Pain. It has done wonders for my sleep and attitude. I am a very active 115 lb. 77 year young female and am not ready to sit down. I know the condition will progressively get worse, but want to be prepared for what to do by reading this site to see what others are doing. Thank you for taking the time to help your community.

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I have had neuropathy since my 40s. Doctors, disbelieving doctors, meds that don’t work. Now I’m 80 and the pain is intense. Burning, pins and needles. Wakes me up and keeps me awake unless I walk around and sometimes go to sleep. Yoga, meditation. In desperation I’m trying them again. Had spine MRI. Things wrong but not enough to cause this pain. I’m convinced doctors think I’m crazy but I do have neuropathy numbness from my waist down and hands.

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@colonial1

I have had neuropathy since my 40s. Doctors, disbelieving doctors, meds that don’t work. Now I’m 80 and the pain is intense. Burning, pins and needles. Wakes me up and keeps me awake unless I walk around and sometimes go to sleep. Yoga, meditation. In desperation I’m trying them again. Had spine MRI. Things wrong but not enough to cause this pain. I’m convinced doctors think I’m crazy but I do have neuropathy numbness from my waist down and hands.

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Hello @colonial1, Welcome to Connect. I'm sorry to hear your doctors don't listen or understand the pain you having. Not getting a good nights sleep makes it even worse.
I've also had neuropathy since around my 40s. I only have the numbness with a little tingling. It's good that you are looking into different treatments to help provide some relief for your symptoms. There is another discussion that you might find helpful.

-- Neuropathy Pain at Night: What helps?
https://connect.mayoclinic.org/discussion/night-pain-2/

Also, the Foundation for Peripheral Neuropathy has a list of treatments including complementary, alternative treatments and a list of supplements that have been helpful in relieving neuropathy symptoms here - https://www.foundationforpn.org/treatments/

Is the Yoga, meditation been helpful so far?

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