Living with Neuropathy - Welcome to the group

@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.

@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

@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.

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

@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 ☺

@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

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.

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.

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.

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.