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?

@lynnaustin

I take 300mg of Gabapentin and just started 60 mg of Cymbalta at bedtime . I haven’t found any topicals for stinging.
Actually reading many of the posts are scaring me . Does PN always progress ? Hoping mine would remain
stable . Thanks for your help.

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@lynnaustin, Thanks for your feedback. In my world so far, Gabapentin is effective in that it calms the nerves that are irritated and bent on sending pain somewhere in your body. I hear you loud and clear about your fear. There are many moments that are frightening. I try to remember that everyone reacts differently. My spiritual advisor/life coach repeatedly tells me "Welcome the pain and then learn from it." I actually converse with my pain. "So, you're back again are you?" "Oh no, not today." With this firsthand information, you can learn to distinguish levels of pain and the pains response to treatments or medications.

It seems like you are on the lowest dose of Gabapentin. Is that taken in the morning or at night with the Cymbalta? For me, Cymbalta is a morning medication for anxiety. It makes a difference in how I approach my day. By helping control anxiety, it prevents you from ending up in the pain, anxiety, pain….loop. During the night when I am asleep, I don't need that help.

At this point, I am going to re-introduce @johnbishop. He is quite familiar with what he calls the supplement protocol. His experience has been that the protocol has enabled him to put the brakes on his neuropathy, e.g. to prevent its progress.

I have found that to control the neuropathy, we must also control both depression and anxiety. With mindful meditation and daily yoga practice, I believe I am able to take charge of the pain and meet it head-on.

With this condition and its advancing nature, it is sometimes necessary to give up an activity that we have enjoyed for many years. The challenge is to find a replacement. And we do have to grieve for the loss of a favorite activity, especially one which offered social engagement as well as physical effort. My bouts with self-harm were always because of a loss. Now I have a replacement and the opportunity to help you and others walking down the same path.

Finally, are you in an open medical cannabis state? There is so much being done with topicals and they last longer than those without the cannabis. Let me know what is available to you?

Have a restful sleep. And find some joy tomorrow. Chris

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@lynnaustin

I take 300mg of Gabapentin and just started 60 mg of Cymbalta at bedtime . I haven’t found any topicals for stinging.
Actually reading many of the posts are scaring me . Does PN always progress ? Hoping mine would remain
stable . Thanks for your help.

Jump to this post

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 ☺

IMG_2206

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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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Hi John , I’m having trouble joining Protocol (not sure of name ). I’d like a list of supplements . Do you have one? Maybe you know website address? If so please send it to me. Thanks

Liked by Leonard

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@lynnaustin

Hi John , I’m having trouble joining Protocol (not sure of name ). I’d like a list of supplements . Do you have one? Maybe you know website address? If so please send it to me. Thanks

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@lynnaustin here are the two links – one to the closed Facebook group which should let you join the group but you might get asked a few questions. This is the Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://www.facebook.com/groups/spnpd – they have a website with links to order the protocol supplements: http://solutions2pnpd.com/. When you join they have a wealth of research information in their Files section. I don't have the pain that most members had with their PN. I feel the supplements have slowed or possibly stopped the progression of the PN in my legs. I still have the numbness but I do have some days better than others and it has not gotten worse as my neurologist said it would 3 years ago.

Liked by Leonard, rwinney

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@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

@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 My neurologist told me that the rate of progression is unpredictable and varies from one person to another. I was diagnosed with pn 10 or 15 years ago, and after years of intractable pain, I had a Burst DR spinal cord stimulator implant two years ago. It reduced the pain by 75+%, but I think that it's not been doing the job over the past few months. A week ago I turned it off to see what would happen, and so far the pain hasn't gotten any worse. I'm seeing a new neurosurgeon in a few weeks to talk about implanting a new stimulator tied into my dorsal root ganglion. I'm hoping it will be effective.

Jim

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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 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.

Liked by Leonard, sherryw

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

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@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 ☺

Liked by Leonard

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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.

Jump to this post

@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.

Liked by Leonard

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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.

Liked by Leonard

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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.

Liked by blocker

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