Living with Neuropathy - Welcome to the group

Posted by Colleen Young @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?

@sherryw

How soon do you think the new product will be released? @johnbishop

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@sherryw the website with the order links says coming soon but I don't have any other information. It's been well over a year in the making with members and the groups leader involved with the financing. They normally have a Facebook live session for members every Wednesday evening at 9pm EST but I haven't been able to watch it for quite awhile due to work and other committments and needing to get up at 5am ☺

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@sherryw

@johnbishop Hello! Have other members of the group seen a slowed progression of their PN? You give me hope since you have been fighting this disease for 20 years.

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@sherryw
Hi there,
My Polyneuropathy started between 30-35 years ago. It started on the bottom of my feet and was bilaterally symmetrical. It progressed up just past my waist but it’s improved in the last 10 years. My feet are mostly numb and feel huge. They still hurt when I walk on them but not as bad and the stinging is gone and the burning virtually all gone. Neurontin or Lyrica never helped. Fentanyl eased my pain better than anything.
Jake

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@johnbishop

@sherryw I know others in the group have been able to taper off all of their pain medications and have a new normal. Like @jimhd said it's unpredictable. I just know that when I started taking the supplements in Sept 2106 that I noticed a dfference after 2 months. The numbness which was just below the knees in each leg was now just above the ankles. It is subjective on my part and each person is different but from my perspective it's seemed to have stopped or slowed down the progression. Others in the group were bedridden and it's allowed them to have more normal life without the pain. The supplements provide the body with what it needs for natural healing of the nerves. I look at it as an alternative to pharmaceuticals used for neuropathic pain that were designed to treat seizures and actually mess with the brain to block the pain signals (my non medical background words/opinion). I still have good and bad days but I feel the supplements really helped me when I had my right knee replaced this April. My recovery went well and I didn't have to take any of the oxycodin tablets they sent home with me for pain. Instead I took Tylenol at night and it did the trick.

If you do decide to join the group, you need to read the welcome new member message that explains everything. You can also search the group for any questions you may have. It's a group focused on helping people help themselves so they won't do the reading for you. Good luck whatever you decide. FYI…the group which is a 501c3 is working on their own product to reduce the number of pills that we have to swallow each day. That is my one downside for me now and I am looking forward to when they release the new product.

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Hi John, are you saying just 1 pill will supposedly replace the entire regimen of supplements suggested in the program? If so, I would think the cost would be prohibitive.

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@helennicola

Hi John, are you saying just 1 pill will supposedly replace the entire regimen of supplements suggested in the program? If so, I would think the cost would be prohibitive.

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Hi @helennicola — I'm not sure exactly but I think there will be 12 different pills a day vs the 20+ I'm taking daily now.

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I am 44 years old and was diagnosed with peripheral neuropathy almost a year and a half ago. This has been a really rough 17 months. There is, so far, no underlying reason that has been determined. I take Gabapentin for pain, Trazodone to help me sleep and recently started Ropinirole for muscle spasms. I began to struggle to walk a few months ago and that has gotten progressively (and rapidly) worse.
I've seen diabetic neuropathy studies and treatments but peripheral neuropathy treatment and outcomes seem, so far, depressing and almost nonexistent.
Gabapentin causes me serious memory issues, and the neuropathy and Gabapentin cause me balance issues, exacerbating my struggles to walk and it's difficult not knowing when I'll suffer a flare so the not knowing makes life difficult to plan for with school aged children.
I often find myself feeling defeated and depressed to think that I will have to live the rest of my life in chronic and unpredictable pain.
Any words of wisdom or advice for someone quite new to this life would be greatly appreciated.

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@blocker

I am 44 years old and was diagnosed with peripheral neuropathy almost a year and a half ago. This has been a really rough 17 months. There is, so far, no underlying reason that has been determined. I take Gabapentin for pain, Trazodone to help me sleep and recently started Ropinirole for muscle spasms. I began to struggle to walk a few months ago and that has gotten progressively (and rapidly) worse.
I've seen diabetic neuropathy studies and treatments but peripheral neuropathy treatment and outcomes seem, so far, depressing and almost nonexistent.
Gabapentin causes me serious memory issues, and the neuropathy and Gabapentin cause me balance issues, exacerbating my struggles to walk and it's difficult not knowing when I'll suffer a flare so the not knowing makes life difficult to plan for with school aged children.
I often find myself feeling defeated and depressed to think that I will have to live the rest of my life in chronic and unpredictable pain.
Any words of wisdom or advice for someone quite new to this life would be greatly appreciated.

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Hi @blocker, Welcome to Connect. I'm sorry for your pain. Neuropathy can be a rough journey. I'm hoping the joining the discussion here on Connect and learning as much as you can about your condition will help you find some answers that will help your pain and give you some relief. I have idiopathic small fiber peripheral neuropathy but I only have the numbness with my PN. I've posted my story and what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I do think some forms of mild exercise may help with the balance issues. The Foundation for Peripheral Neuropathy has some information that may be helpful on their site here:
https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/
Is your peripheral neuropathy mostly in your feet and/or legs? @artscaping and other members may be able to share what helps them also.

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@blocker

I am 44 years old and was diagnosed with peripheral neuropathy almost a year and a half ago. This has been a really rough 17 months. There is, so far, no underlying reason that has been determined. I take Gabapentin for pain, Trazodone to help me sleep and recently started Ropinirole for muscle spasms. I began to struggle to walk a few months ago and that has gotten progressively (and rapidly) worse.
I've seen diabetic neuropathy studies and treatments but peripheral neuropathy treatment and outcomes seem, so far, depressing and almost nonexistent.
Gabapentin causes me serious memory issues, and the neuropathy and Gabapentin cause me balance issues, exacerbating my struggles to walk and it's difficult not knowing when I'll suffer a flare so the not knowing makes life difficult to plan for with school aged children.
I often find myself feeling defeated and depressed to think that I will have to live the rest of my life in chronic and unpredictable pain.
Any words of wisdom or advice for someone quite new to this life would be greatly appreciated.

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First this site will help you find suggestions and information to discussion with your healthcare providers. Information is empowering and power helps with regaining control of your life. Search for a therapist who deals with chronic pain, not just sport and surgical injuries. It takes understanding to help us with the difficulty we deal with everyday and will not be solved with a quick fix. Firmness and resolve are needed to find what works for you. My provider changed my meds from Gabapentin to cymbalta due to balance issues and it also treats depression. Good science based website are valuable but there is a lot of garbage type of sites offering misinformation. Keep looking for helpful people and support, it is out there.

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@johnbishop

Hi @lynnaustin, Welcome to Connect. I have idiopathic small fiber peripheral neuropathy but I only have numbness in my feet and just above the ankles. I don't have the typical pain or stinging/burning. I'm tagging @artscaping who may be able to share from her experience. You can read what has helped me in an earlier post on Connect where I shared my story: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You might also be interested in another discussion here on Connect:
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you able to share a little more about your PN diagnosis and what you have tried for treatments?

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Hi John..I was on TheProtocol website and read that the newer program will be out in Fall of 2019. I know you had success with it but I was disappointed that there weren't a lot of testimonials from people who were successful. I only read a few of the moderators that wrote of their improvements.

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@zorrospouse

First this site will help you find suggestions and information to discussion with your healthcare providers. Information is empowering and power helps with regaining control of your life. Search for a therapist who deals with chronic pain, not just sport and surgical injuries. It takes understanding to help us with the difficulty we deal with everyday and will not be solved with a quick fix. Firmness and resolve are needed to find what works for you. My provider changed my meds from Gabapentin to cymbalta due to balance issues and it also treats depression. Good science based website are valuable but there is a lot of garbage type of sites offering misinformation. Keep looking for helpful people and support, it is out there.

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I was changed from gabapentin to Cymbalta & I started with 30 mg & I was just increased to 60 mg & I have been on it for 4 days now & I still don't see any improvement & I was on the 30mg for a month. I sure hope it helps bc I haven't noticed any side effects as of yet.

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@lynnaustin

Hi John..I was on TheProtocol website and read that the newer program will be out in Fall of 2019. I know you had success with it but I was disappointed that there weren't a lot of testimonials from people who were successful. I only read a few of the moderators that wrote of their improvements.

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Hi @lynnaustin — The website was setup after the Facebook group started growing as an easy way to order the different vitamins and minerals through Amazon. You are right, they've only shared a few testimonials on the website. If you want to see all of the testimonials from members who have had success with the protocol, join the Facebook group – http://www.facebook.com/groups/spnpd. You may have to answer a few questions to join but once you join and read through the new member welcome message you can easily find many, many testimonials by going to the top of the groups Facebook page and typing #theprotocolworks. This was the tag that members used to post their success using the protocol in group. The groups Files section has a wealth of research information in it which was one of the highlights for me.

I've been a member since August 2016 when the group was less than 500 members. The group is currently 8.9K members in numbers which will give you an idea of the all the folks with PN looking for relief.

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@johnbishop

Hi @lynnaustin, I agree with Chris's @artscaping approach to neuropathy. I have dealt with numb feet for over 20 years and when it seemed to be getting worse in 2016 I started worring which didn't help me. I had avoided having tests to diagnose the PN because years earlier when I asked the doctor what can they do to fix it if they determine it's nerve damage. The doctor said nothing and I just avoided thinking about it until it started getting worse. After my diagnosis of idiopathic small fiber peripheral neuropathy mostly likely genetic the neurologist told me there are no topicals or medications that can help with the numbness and I didn't have any pain or burning. I was depressed until I started doing my own research and learning as much as I can about neuropathy.

One of the first things I did was join the Minnesota Neuropathy Association when looking for a local support group. At one of their meetings I heard some words of wisdom from an 80+ year old neurologist still doing research at the University of Minnesota. He said if you live long enough you will get neuropathy because nerves eventually die. So I started looking for alternative ways of helping with my particular numbness only neuropathy. You can read about how I found the supplements I taked in my story in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Bottom line that I have learned from all my research is that there is no cure for neuropathy but you can find treatments for the symptoms and live a more normal life. My great hope for the future is stem cell therapy for neuropathy but it's just not there yet. As promising as stem cell research is for a lot of things, I don't believe there has been any successful treatments for neuropathy. There is another discussion that you might find interesting and a warning from the FDA.

Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

There are also some warnings about all the stem cell clinics popping up.

Consumer Updates > FDA Warns About Stem Cell Therapies
https://www.fda.gov/forconsumers/consumerupdates/ucm286155.htm

There are a lot of things that I can no longer do, some because I'm a lot older and some due to my health conditions. Like Chris and others I try to take each day one at a time the best I can and find something that gives me joy each day. I do like taking photos from the window next to my computer ☺

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Nice photos ! Relaxing I’m sure.
Thanks for your suggestions and guidance for all of us dealing with various forms of chronic pain. You really are an inspiration with your positive attitude and always researching for others for treatment that might help.
Keep up the great work- to you and the other moderators as well.

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@mlross4508

Nice photos ! Relaxing I’m sure.
Thanks for your suggestions and guidance for all of us dealing with various forms of chronic pain. You really are an inspiration with your positive attitude and always researching for others for treatment that might help.
Keep up the great work- to you and the other moderators as well.

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@mlross4508, thank you for the kind words! That was one of my surprise photos. I think I might have spilled some sunflower seeds when filling the bird feeder and the neighborhood cleanup crew took care of the mess I made ☺

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