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?

@qball2019

I find relief by sleeping with my feet up. I'm talking like on a 90 degree angle.

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@qball2019
How can you achieve that angle? Do you have an adjustable bed?

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I know nothing about relieving the pain for this at all. This is why I am reaching out.

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@hopeful33250

@qball2019
How can you achieve that angle? Do you have an adjustable bed?

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How would l get off floor

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@sandy552

I know nothing about relieving the pain for this at all. This is why I am reaching out.

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Hello @sandy552, Welcome to Connect. Are you able to share a little more about your neuropathy diagnosis and what treatments you have tried?

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I am margaretob and did join the group…M.

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@sandy552

I know nothing about relieving the pain for this at all. This is why I am reaching out.

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See a NEUROLOGIST FOR MEDS…M.

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@johnbishop

Hello @sandy552, Welcome to Connect. Are you able to share a little more about your neuropathy diagnosis and what treatments you have tried?

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John, thank you for your concern. Serious pain and DABETIC PERIPHERAL NEUROPATHY DIAGNOSED.
GOT GABAPENTIN AND METANX…..told to also include COFFEE (helps) and ASPIRIN when the pain is bad.

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@margaretob

John, thank you for your concern. Serious pain and DABETIC PERIPHERAL NEUROPATHY DIAGNOSED.
GOT GABAPENTIN AND METANX…..told to also include COFFEE (helps) and ASPIRIN when the pain is bad.

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IT TAKES A COUPLE OF WEEKS …to slow down the pain…M.

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I’m interested in finding out more about painful burning and tingling neuropathy in my hands and wrists that wakes me up at night and keeps me awake for extended periods of time.

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@gramm

I’m interested in finding out more about painful burning and tingling neuropathy in my hands and wrists that wakes me up at night and keeps me awake for extended periods of time.

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Hello @gramm, Welcome to Connect. I know the tingling and burning in your hands and wrists can be awful especially when it wakes you up and keeps you awake. Have you been diagnosed with neuropathy by a neurologist or doctor? Does the burning and tingling symptoms occur during the daytime also?

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@johnbishop

Hello @gramm, Welcome to Connect. I know the tingling and burning in your hands and wrists can be awful especially when it wakes you up and keeps you awake. Have you been diagnosed with neuropathy by a neurologist or doctor? Does the burning and tingling symptoms occur during the daytime also?

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I’ve not been tested for neuropathy but have been tested for carpal tunnel. I do have severe carpal that I refuse surgery for because I’m handicapped and non-ambulatory, so use my hands and arms to move from wheelchair to toilet, etc. My doctor has checked and says I have neuropathy though too.

I get the numbness during the daytime but seldom the pain. I’ve had to give up my knitting and crochet work because of it. I also drop things a lot.

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@gramm

I’ve not been tested for neuropathy but have been tested for carpal tunnel. I do have severe carpal that I refuse surgery for because I’m handicapped and non-ambulatory, so use my hands and arms to move from wheelchair to toilet, etc. My doctor has checked and says I have neuropathy though too.

I get the numbness during the daytime but seldom the pain. I’ve had to give up my knitting and crochet work because of it. I also drop things a lot.

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@gramm I also have severe carpal tunnel in my hands and sometimes at night when I'm sleeping on my side I will get the tingling and numbness in my hands, wrists and arms which wakes me up. I am usually able to shake it off after a few minutes though. Have you tried any hand exercises to help?

Therapeutic Exercise Program for Carpal Tunnel Syndrome
https://orthoinfo.aaos.org/en/recovery/carpal-tunnel-syndrome-therapeutic-exercise-program/

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@gramm carpal tunnel is one cause of neuropathy. Usually neuropathy is the whole nervous system, but a bad back or carpal tunnel will involve only the nervous system after the blockage. The operation for carpal tunnel is quite easy and you recover fairly quick. I understand your reluctance to have the operation due to having to use your hands to move. However the carpal tunnel is cutting off your nervous system in your hands which could result in permanent damage to your nerves there. If that happens you would end up with hands you would not be able to use. If in the US, insurance will often cover a stay in a rehab facility until you can use your hands if needed. Your situation seems to be one of those. Maybe your doctor can help you with that, or maybe your clinic has a patient co-ordinator that would help with that. My grandmother had the surgery at 80 years old so it is certainly doable.

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I had carpel tunnel surgery about 20-39 years ago and it solved the problem completely. I had six weeks in a sling & it was well worth it. One day I went and picked up a little light piece of make up and man it just went crazy with pain & I dropped it and I couldn’t pick up anything. Before that date I had episodes of pain and soreness wore a brace especially at night it hurt then it was all over at one time

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@johnbishop

Hello @sandy552, Welcome to Connect. Are you able to share a little more about your neuropathy diagnosis and what treatments you have tried?

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@johnbishop An interesting, but lengthly article from a medical journal https://onlinelibrary.wiley.com/doi/10.1111/jns.12298

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