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?

I’ve recently been diagnosed with small fiber neuropathy with unknown cause. I first started having pain about 4 years ago. I am just a bit depressed and discouraged and need to know I’m not alone.

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@alaskaann

I’ve recently been diagnosed with small fiber neuropathy with unknown cause. I first started having pain about 4 years ago. I am just a bit depressed and discouraged and need to know I’m not alone.

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Hello @alaskaann, welcome to Mayo Connect. Connect is a great place to ask questions and learn what others with similar health problems are doing for treatments. Let me be the first to tell you that you are not alone. I also have idiopathic small fiber peripheral neuropathy which I’ve had for 20+ years.

Do you have any pain with your neuropathy? Also, is the neuropathy in your hands and feet? I only have the numbness and tingling with mine. If you want to read the details of my story, I’ve shared them in a post here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985

It’s understandable to be discouraged and a bit depressed. What is good is to learn everything you can about your health situation and try to find something that helps you. You are your best advocate.

Do you have any questions you are trying to get answered?

John

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Thank you for your quick reply and encouraging words. I have pain ranging from numbness, tingling, stabbing, burning and buzzing. Sometimes it feels like the ” Aurora Borealis” of pain ebbing through my body, mainly in my legs, arms and left side of my face. I was taking gabapentin, then switched to Lyrica after seeing a neurologist. However, I had some bad side effects with Lyrica and weaned myself off of it. So, for about 2 weeks, I haven’t taken anything. I can’t sleep very well because of the pain. ( It took a while to get in to see my family doctor.) She wrote a prescription for Gralise. I’m not sure if my insurance will cover it. I’m wondering about CBD? I also take Cymbalta.

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@alaskaann

I’ve recently been diagnosed with small fiber neuropathy with unknown cause. I first started having pain about 4 years ago. I am just a bit depressed and discouraged and need to know I’m not alone.

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@alaskaann

You’re surely not alone. I have been having burning pain in my feet from idiopathic peripheral neuropathy for a number of years. I tried every medication for neuropathy, with no help. I had a spinal cord stimulator implant in June and the pain is greatly reduced, but not eliminated, unfortunately

I have both small fiber and autonomic neuropathy, still learning.

Medications for neuropathy has helped a lot of people.

Jim

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Hi @alaskaann, there are a couple of existing discussions on CBD here that might be helpful:

– CBD https://connect.mayoclinic.org/discussion/cbd/
– Chronic pain and medical marijuana https://connect.mayoclinic.org/discussion/chronic-pain-2bd75e/

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I’m so glad to have found this group. I broke my back 15 years ago, 8 surgeries later and two implants of nerve stimulator, the second one with 16 leads in my spinal column I’m still in relentless chronic pain. I’m prone to falls, my balance is severely affected. I’m the object of what they call failed fusion surgery, of which I had two. 15 months ago I had a bad fall in the shower and sustained a severe brain trauma. Coma scale 4 for a week. Subdural hematoma, filled half of my brain. Emergency surgery, followed by another to replace the 4 inch hole in my skull with an acrylic plate.
I’m aware that I’m a walking, talking miracle. However, the headaches are debilitating, sensitivity to noise and bright light, instances of slurred speech and memory loss, more balance issues and my back pain is worse than ever. My quality of life sucks and sometimes I wonder if it’s worth trying to carry on. I’m but a shell of who I used to be.
I am useless to my family. Just a subject of constant worry for them. I used to write, but I forget words all the time, it takes me forever to write even this because I know what I want to say but it takes forever to put together a sentence which makes sense. I was condsidered intelligent and eloquent, was fluent in three languages.
I am on Neurontin but can’t take opiates because I developed an addiction. So I’m left to over the counter stuff, which actually works on my headaches if I alternate between ibuprofen, Tylenol, and naproxen. It does nothing for the relentless back pain. I feel I’m at the end of my tolerance and although my family is supportive I know they are tired.
Any advice?

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@sabinebloomquist

I’m so glad to have found this group. I broke my back 15 years ago, 8 surgeries later and two implants of nerve stimulator, the second one with 16 leads in my spinal column I’m still in relentless chronic pain. I’m prone to falls, my balance is severely affected. I’m the object of what they call failed fusion surgery, of which I had two. 15 months ago I had a bad fall in the shower and sustained a severe brain trauma. Coma scale 4 for a week. Subdural hematoma, filled half of my brain. Emergency surgery, followed by another to replace the 4 inch hole in my skull with an acrylic plate.
I’m aware that I’m a walking, talking miracle. However, the headaches are debilitating, sensitivity to noise and bright light, instances of slurred speech and memory loss, more balance issues and my back pain is worse than ever. My quality of life sucks and sometimes I wonder if it’s worth trying to carry on. I’m but a shell of who I used to be.
I am useless to my family. Just a subject of constant worry for them. I used to write, but I forget words all the time, it takes me forever to write even this because I know what I want to say but it takes forever to put together a sentence which makes sense. I was condsidered intelligent and eloquent, was fluent in three languages.
I am on Neurontin but can’t take opiates because I developed an addiction. So I’m left to over the counter stuff, which actually works on my headaches if I alternate between ibuprofen, Tylenol, and naproxen. It does nothing for the relentless back pain. I feel I’m at the end of my tolerance and although my family is supportive I know they are tired.
Any advice?

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@sabinebloomquist

I'm impressed with how far you've come. I understand having to sit and wait for the right word to come. That's surely a benefit of being able to communicate online. No one has to know how long it took me to put the last sentence together.

I have a spinal cord stimulator for peripheral neuropathy pain in my feet. It really reduced the amount of pain I have. Are your stimulators treating your back pain?

I'm trying Gabapentin for the second time right now, and take morphine sulfate contin. The morphine is the only thing that's touched the pain. At this point, I'm not addicted to it, but if I can't find some other medication, I'm going to ask my doctor to increase my dosage, which is really low right now. It's good that you've found a rotation of OTC meds that work for you. I do have oxycodone if pain is really bad, but I rarely take it.

It's really helpful to have a supportive family. Can you move around enough to get a bit of exercise?

Jim

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@sabinebloomquist

I’m so glad to have found this group. I broke my back 15 years ago, 8 surgeries later and two implants of nerve stimulator, the second one with 16 leads in my spinal column I’m still in relentless chronic pain. I’m prone to falls, my balance is severely affected. I’m the object of what they call failed fusion surgery, of which I had two. 15 months ago I had a bad fall in the shower and sustained a severe brain trauma. Coma scale 4 for a week. Subdural hematoma, filled half of my brain. Emergency surgery, followed by another to replace the 4 inch hole in my skull with an acrylic plate.
I’m aware that I’m a walking, talking miracle. However, the headaches are debilitating, sensitivity to noise and bright light, instances of slurred speech and memory loss, more balance issues and my back pain is worse than ever. My quality of life sucks and sometimes I wonder if it’s worth trying to carry on. I’m but a shell of who I used to be.
I am useless to my family. Just a subject of constant worry for them. I used to write, but I forget words all the time, it takes me forever to write even this because I know what I want to say but it takes forever to put together a sentence which makes sense. I was condsidered intelligent and eloquent, was fluent in three languages.
I am on Neurontin but can’t take opiates because I developed an addiction. So I’m left to over the counter stuff, which actually works on my headaches if I alternate between ibuprofen, Tylenol, and naproxen. It does nothing for the relentless back pain. I feel I’m at the end of my tolerance and although my family is supportive I know they are tired.
Any advice?

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I no longer believe in miracles.

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@sabinebloomquist

I’m so glad to have found this group. I broke my back 15 years ago, 8 surgeries later and two implants of nerve stimulator, the second one with 16 leads in my spinal column I’m still in relentless chronic pain. I’m prone to falls, my balance is severely affected. I’m the object of what they call failed fusion surgery, of which I had two. 15 months ago I had a bad fall in the shower and sustained a severe brain trauma. Coma scale 4 for a week. Subdural hematoma, filled half of my brain. Emergency surgery, followed by another to replace the 4 inch hole in my skull with an acrylic plate.
I’m aware that I’m a walking, talking miracle. However, the headaches are debilitating, sensitivity to noise and bright light, instances of slurred speech and memory loss, more balance issues and my back pain is worse than ever. My quality of life sucks and sometimes I wonder if it’s worth trying to carry on. I’m but a shell of who I used to be.
I am useless to my family. Just a subject of constant worry for them. I used to write, but I forget words all the time, it takes me forever to write even this because I know what I want to say but it takes forever to put together a sentence which makes sense. I was condsidered intelligent and eloquent, was fluent in three languages.
I am on Neurontin but can’t take opiates because I developed an addiction. So I’m left to over the counter stuff, which actually works on my headaches if I alternate between ibuprofen, Tylenol, and naproxen. It does nothing for the relentless back pain. I feel I’m at the end of my tolerance and although my family is supportive I know they are tired.
Any advice?

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Welcome to Connect, @sabinebloomquist
I, too, speak 3 languages. Judging from your message posted here, your fluency in writing English remains at a high level. Have you noticed that your injuries have affected the languages differently?

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Is anyone familiar with Norman Doidge and his research work with neuroplasticity? Pretty interesting stuff and may provide some hope for some chronic pain patients. I ordered his book "The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity" and I'm hoping if nothing else it will be an interesting read. He has a lot of videos on YouTube if you search on his name + YouTube.

John

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@johnbishop

Is anyone familiar with Norman Doidge and his research work with neuroplasticity? Pretty interesting stuff and may provide some hope for some chronic pain patients. I ordered his book "The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity" and I'm hoping if nothing else it will be an interesting read. He has a lot of videos on YouTube if you search on his name + YouTube.

John

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I will look into him and purchase his book. I try to stay open to any new ideas which may help. This illness is a monster, but we humans are pretty clever at dealing with it. I have learned that from the people on this website. Just wish I didn't dream I am my physical self of ten years ago.

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@sabinebloomquist

I’m so glad to have found this group. I broke my back 15 years ago, 8 surgeries later and two implants of nerve stimulator, the second one with 16 leads in my spinal column I’m still in relentless chronic pain. I’m prone to falls, my balance is severely affected. I’m the object of what they call failed fusion surgery, of which I had two. 15 months ago I had a bad fall in the shower and sustained a severe brain trauma. Coma scale 4 for a week. Subdural hematoma, filled half of my brain. Emergency surgery, followed by another to replace the 4 inch hole in my skull with an acrylic plate.
I’m aware that I’m a walking, talking miracle. However, the headaches are debilitating, sensitivity to noise and bright light, instances of slurred speech and memory loss, more balance issues and my back pain is worse than ever. My quality of life sucks and sometimes I wonder if it’s worth trying to carry on. I’m but a shell of who I used to be.
I am useless to my family. Just a subject of constant worry for them. I used to write, but I forget words all the time, it takes me forever to write even this because I know what I want to say but it takes forever to put together a sentence which makes sense. I was condsidered intelligent and eloquent, was fluent in three languages.
I am on Neurontin but can’t take opiates because I developed an addiction. So I’m left to over the counter stuff, which actually works on my headaches if I alternate between ibuprofen, Tylenol, and naproxen. It does nothing for the relentless back pain. I feel I’m at the end of my tolerance and although my family is supportive I know they are tired.
Any advice?

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I do not either. At the same time it was a "miracle" of sorts to find this group. Yes,the cane,the pain, the depression – all still here. But there are voices with the same with suggestions,maybe a joke or squirrel pic, to lighten the day. Thinking of you.

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@sabinebloomquist

I’m so glad to have found this group. I broke my back 15 years ago, 8 surgeries later and two implants of nerve stimulator, the second one with 16 leads in my spinal column I’m still in relentless chronic pain. I’m prone to falls, my balance is severely affected. I’m the object of what they call failed fusion surgery, of which I had two. 15 months ago I had a bad fall in the shower and sustained a severe brain trauma. Coma scale 4 for a week. Subdural hematoma, filled half of my brain. Emergency surgery, followed by another to replace the 4 inch hole in my skull with an acrylic plate.
I’m aware that I’m a walking, talking miracle. However, the headaches are debilitating, sensitivity to noise and bright light, instances of slurred speech and memory loss, more balance issues and my back pain is worse than ever. My quality of life sucks and sometimes I wonder if it’s worth trying to carry on. I’m but a shell of who I used to be.
I am useless to my family. Just a subject of constant worry for them. I used to write, but I forget words all the time, it takes me forever to write even this because I know what I want to say but it takes forever to put together a sentence which makes sense. I was condsidered intelligent and eloquent, was fluent in three languages.
I am on Neurontin but can’t take opiates because I developed an addiction. So I’m left to over the counter stuff, which actually works on my headaches if I alternate between ibuprofen, Tylenol, and naproxen. It does nothing for the relentless back pain. I feel I’m at the end of my tolerance and although my family is supportive I know they are tired.
Any advice?

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See below. (Keep trying)

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@johnbishop

Is anyone familiar with Norman Doidge and his research work with neuroplasticity? Pretty interesting stuff and may provide some hope for some chronic pain patients. I ordered his book "The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity" and I'm hoping if nothing else it will be an interesting read. He has a lot of videos on YouTube if you search on his name + YouTube.

John

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Hello @keeptrying, I'm a dreamer too ☺ Before you buy the book you might want to watch a few of his videos on YouTube where he explains his research and provides examples of what he has seen. Here's one that's 28 minutes long.

Norman Doidge: Brain's Healing Energies – YouTube

Here's a search link of all of his YouTube videos:
https://goo.gl/F2N9fg

John

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@johnbishop

Is anyone familiar with Norman Doidge and his research work with neuroplasticity? Pretty interesting stuff and may provide some hope for some chronic pain patients. I ordered his book "The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity" and I'm hoping if nothing else it will be an interesting read. He has a lot of videos on YouTube if you search on his name + YouTube.

John

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@johnbishop

Maybe you can give us a book report after you've read it.

Jim

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