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?

Go to website. Reddit

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@straightway22

I have peripheral neuropathy and it’s getting worse. In fact I have autonomic peripheral neuropathy. I have no pain. But I can barely walk. I fell today. My balance is terrible. What do you people do. Is there any relief from this

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Hello @straightway22, welcome to Connect. Sorry to hear that you fell and also have peripheral neuropathy. I also have no pain with my neuropathy but I do have balance issues like you. There are some exercises you can do to help with the balance issues. There is a discussion that you may want to read through and see what others have done to help their balance problems.

> Groups > Healthy Living > Having trouble keeping your balance?
https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Have you looked at any different therapies or exercises to help with your balance problem?

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@seniordon09

I've had peripheral neurpathy for over 10 years now !
I've been to too many doctors than I want to think about who told me that they could stop my pain in my feet and toes !!?
Everyone one of them couldn't help my pain !
I to had a nerve stimulator implanted in my lower back over a year ago and had it taken out today ( 1-30-2020 ) !
I'm not giving up, still looking for a doctor ?

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@seniordon09 @straightway22

I had a Burst DR spinal cord stimulator implant in June, 2017, and it has made a significant improvement in the neuropathy pain in my feet. More so the first year. Now I need to have it adjusted every 3 months, but it does still continue to improve my pain. I have small fiber idiopathic peripheral polyneuropathy and the beginning of autonomic neuropathy. PN accounts for the pain and numbness and tingling in my feet and elsewhere. Signs of autonomic neuropathy include (possibly) diplopia, esophageal dysmotility, silent reflux, ED, balance, sudden temporary knee muscle loss, who knows what else.

I've tried a very long list of medications, beginning with my PCP, then neurologists, and pain specialist. I'm taking Imipramine now, and it's the first one that has helped with the pain without unacceptable side effects. I wish I could say that my feet don't hurt, because they do, depending on my activity. It would be so, so good to be pain free for a day!

I was being treated for clinical depression, anxiety disorder, PTSD and suicidal ideation several years before the pain started. When I began feeling first numbness and tingling, then a couple of years later the burning pain, it set me back to deeper depression. Pain and depression fuel each other for many people, including me. So, not only would it be possible to be pain free for a day, it would be great not to have mental health issues for a day.

Finding the right treatment for neuropathy can be a very long process, unless you chance to hit upon the right medication right off the bat. I wish you well. Hang out here in the Connect group and see what has helped others in your shoes. We're always sharing ideas, as well as searching for answers.

Jim

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Hello
I'm new to the Group. I was recently dignosed with
peripheral neuropathy. While at the doctors for my test results and told I have peripheral neuropathy,
I left my doctors office last week realizing she said absolutely nothing to me about my new dignose? ( I don't believe she understands how bad my life has become)
I have no idea what kind of doctor to see, what this is caused from, will it ever get better and so many more questions left unanswered.
It's gotten so bad that I can only lay on my back at night to sleep because trying to sleep on either side causes so much hip pain that's become unbearable. My biggest worry is, when I wake-up because it's become a point that I'm unable to walk.
Can anyone help me out with some
Ideas of a specialist I should see, what others may be going through or any helpful ideas?
I'm really worried that one day I'll be unable to walk. I started myself on a high dose of vitamin B12 and a calcium vitamin. Anyone's input would be so welcomed.
Thank you
All so much
Ruth From Florida

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@adrianna143

Hello
I'm new to the Group. I was recently dignosed with
peripheral neuropathy. While at the doctors for my test results and told I have peripheral neuropathy,
I left my doctors office last week realizing she said absolutely nothing to me about my new dignose? ( I don't believe she understands how bad my life has become)
I have no idea what kind of doctor to see, what this is caused from, will it ever get better and so many more questions left unanswered.
It's gotten so bad that I can only lay on my back at night to sleep because trying to sleep on either side causes so much hip pain that's become unbearable. My biggest worry is, when I wake-up because it's become a point that I'm unable to walk.
Can anyone help me out with some
Ideas of a specialist I should see, what others may be going through or any helpful ideas?
I'm really worried that one day I'll be unable to walk. I started myself on a high dose of vitamin B12 and a calcium vitamin. Anyone's input would be so welcomed.
Thank you
All so much
Ruth From Florida

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Hi Ruth

Welcome to Connect. You will see my response earlier to a newly diagnosed member. Well, same thoughts are for you. It really does suck and is unfortunate …the way we need to fend for ourselves with this disease.

I need to sleep in my recliner 50% of the time for pain reasons like yours. It's not fun waking up feeling like you've been hit by a train

My fears of not walking one day are the same as yours and I understand how much negative thoughts can consume the mind.

My best advice is to take each day as it comes, as hard as it may be to stay in the moment. Learn as much as you can about the disease. Understand that each persons case will be unique to them. Keep connected and talk about what you are going through.

Wishing you the best. Take care
Rachel

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Hi Ruth, another Floridian here. Just one thought for you-did your bloodwork she a deficiency in B12 and calcium? The first neurologist I had gave me an RX for a 'super B' type vitamin. He never did bloodwork. I took it for about 5 days and my pain got worse because I didn’t need the B6, my primary dr. then did bloodwork so I know now I did need B12.

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@adrianna143

Hello
I'm new to the Group. I was recently dignosed with
peripheral neuropathy. While at the doctors for my test results and told I have peripheral neuropathy,
I left my doctors office last week realizing she said absolutely nothing to me about my new dignose? ( I don't believe she understands how bad my life has become)
I have no idea what kind of doctor to see, what this is caused from, will it ever get better and so many more questions left unanswered.
It's gotten so bad that I can only lay on my back at night to sleep because trying to sleep on either side causes so much hip pain that's become unbearable. My biggest worry is, when I wake-up because it's become a point that I'm unable to walk.
Can anyone help me out with some
Ideas of a specialist I should see, what others may be going through or any helpful ideas?
I'm really worried that one day I'll be unable to walk. I started myself on a high dose of vitamin B12 and a calcium vitamin. Anyone's input would be so welcomed.
Thank you
All so much
Ruth From Florida

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Hi Ruth @adrianna143, I would like to add my welcome to Connect along with @rwinney and other members. You are doing a good thing learning as much as you can about your health condition. I have idiopathic small fiber peripheral neuropathy but I only have numbness. The neurologist who diagnosed me thought it may be heredity in my case. He had no treatment suggestions since they have nothing that works for numbness. I started doing my own research and trying to learn as much as I can to help my condition.
I do take supplements which help me and seems to have slowed or stopped the progression of the neuropathy. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I also have trouble sleeping on my right side due to hip pain but I don't think mine is related to neuropathy. I think mine is related to arthritis joint pain. I'm thinking about getting an adjustable bed that has a zero gravity setting which make it easy for sleeping – slightly elevates the head and the legs but you can also manually control the leg and head positions.

Did your doctors offer any suggestions?

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@johnbishop

Hi Ruth @adrianna143, I would like to add my welcome to Connect along with @rwinney and other members. You are doing a good thing learning as much as you can about your health condition. I have idiopathic small fiber peripheral neuropathy but I only have numbness. The neurologist who diagnosed me thought it may be heredity in my case. He had no treatment suggestions since they have nothing that works for numbness. I started doing my own research and trying to learn as much as I can to help my condition.
I do take supplements which help me and seems to have slowed or stopped the progression of the neuropathy. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I also have trouble sleeping on my right side due to hip pain but I don't think mine is related to neuropathy. I think mine is related to arthritis joint pain. I'm thinking about getting an adjustable bed that has a zero gravity setting which make it easy for sleeping – slightly elevates the head and the legs but you can also manually control the leg and head positions.

Did your doctors offer any suggestions?

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I have soreness on both sides so I cannot sleep except in recliner. The problem is inflammation which really hurts. I find green tea and turmeric helps.

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@arlenejc

I have soreness on both sides so I cannot sleep except in recliner. The problem is inflammation which really hurts. I find green tea and turmeric helps.

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You may want to research Red Kratom! It’s not marijuana

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@adrianna143

Hello
I'm new to the Group. I was recently dignosed with
peripheral neuropathy. While at the doctors for my test results and told I have peripheral neuropathy,
I left my doctors office last week realizing she said absolutely nothing to me about my new dignose? ( I don't believe she understands how bad my life has become)
I have no idea what kind of doctor to see, what this is caused from, will it ever get better and so many more questions left unanswered.
It's gotten so bad that I can only lay on my back at night to sleep because trying to sleep on either side causes so much hip pain that's become unbearable. My biggest worry is, when I wake-up because it's become a point that I'm unable to walk.
Can anyone help me out with some
Ideas of a specialist I should see, what others may be going through or any helpful ideas?
I'm really worried that one day I'll be unable to walk. I started myself on a high dose of vitamin B12 and a calcium vitamin. Anyone's input would be so welcomed.
Thank you
All so much
Ruth From Florida

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Hello Ruth from Florida: So sorry for all the pain you are suffering.
I recently purchased a Cold Laser (12 days ago from Amazon for $129) and have been using morning and night. It has pretty much stopped the pain in my feet. I had also started an over the counter magnesium tablet daily. Maybe it is the combination – but I will keep doing both as long as it is working. It is nice to be able to sleep again.
As a side note to this the numbness in my feet still persist.
Wish you well and hope you can get some relief.
Mike from Surprise AZ

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@johnbishop

Hi Ruth @adrianna143, I would like to add my welcome to Connect along with @rwinney and other members. You are doing a good thing learning as much as you can about your health condition. I have idiopathic small fiber peripheral neuropathy but I only have numbness. The neurologist who diagnosed me thought it may be heredity in my case. He had no treatment suggestions since they have nothing that works for numbness. I started doing my own research and trying to learn as much as I can to help my condition.
I do take supplements which help me and seems to have slowed or stopped the progression of the neuropathy. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I also have trouble sleeping on my right side due to hip pain but I don't think mine is related to neuropathy. I think mine is related to arthritis joint pain. I'm thinking about getting an adjustable bed that has a zero gravity setting which make it easy for sleeping – slightly elevates the head and the legs but you can also manually control the leg and head positions.

Did your doctors offer any suggestions?

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Hi all. I purchased a Sleep Number bed 2 years ago for pain reasons. It was quite costly however worth It overall. My husband loves the zero gravity setting as @johnbishop referred to. I am all over the map with my settings. Unfortunately, my neuropathy has a mind of its own and every day may be different, resulting in different sleep needs. Sleep Number is definitely worth a try if in the budget.

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@rwinney

Hi all. I purchased a Sleep Number bed 2 years ago for pain reasons. It was quite costly however worth It overall. My husband loves the zero gravity setting as @johnbishop referred to. I am all over the map with my settings. Unfortunately, my neuropathy has a mind of its own and every day may be different, resulting in different sleep needs. Sleep Number is definitely worth a try if in the budget.

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@rwinney and @johnbishop, Can either of you explain what "zero gravity" means in terms of a sleep number bed?

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I believe John detailed it a bit in his previous post but it's somewhat of a weightless setting, as if you are floating. Head up, feet up…taking pressure off spine. Google Sleep Number if you can or the anazing @johnbishop will attach a link! 😊

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@hopeful33250

@rwinney and @johnbishop, Can either of you explain what "zero gravity" means in terms of a sleep number bed?

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Hi Teresa @hopeful33250 @rwinney — Here's a description of the zero gravity setting.

The position relieves the pressures of gravity from the body by distributing the body's weight evenly to permit for the right amount of needed support. Zero Gravity in the adjustable bed frame allows for the legs and head to be raised at just the right angle to reduce back pressure and increase circulation.

I think the Sleep Number is a good option but I'm looking at a Ghostbed adjustable frame and mattress since I can get two XL single frames together (both adjustable individually) for a lot less money than the Sleep Number. We had a Sleep Number bed when they first came out and I loved it. Over the years it started losing air and we got a Ghostbed mattress and used the Sleep number frame. I was probably too large for the bed ☺ — 300+ pounder on one side of the bed was me. Fortunately I'm no longer at that weight and eating much healthier.

Here's more information on how the zero gravity helps: https://www.ghostbed.com/education/benefits-of-zero-gravity-adjustable-bed-base/

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@johnbishop

Hi Teresa @hopeful33250 @rwinney — Here's a description of the zero gravity setting.

The position relieves the pressures of gravity from the body by distributing the body's weight evenly to permit for the right amount of needed support. Zero Gravity in the adjustable bed frame allows for the legs and head to be raised at just the right angle to reduce back pressure and increase circulation.

I think the Sleep Number is a good option but I'm looking at a Ghostbed adjustable frame and mattress since I can get two XL single frames together (both adjustable individually) for a lot less money than the Sleep Number. We had a Sleep Number bed when they first came out and I loved it. Over the years it started losing air and we got a Ghostbed mattress and used the Sleep number frame. I was probably too large for the bed ☺ — 300+ pounder on one side of the bed was me. Fortunately I'm no longer at that weight and eating much healthier.

Here's more information on how the zero gravity helps: https://www.ghostbed.com/education/benefits-of-zero-gravity-adjustable-bed-base/

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Said it before and I'll say it again…You are THE MAN John Bishop!!!!

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