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?

@summertime4 You are welcomed. Good luck! Ask the neurologist questions as to why the injections. Is it to boost your energy? Do you have pernicious anemia? A specific blood test needs to be done for determination and not the B12 deficiency.

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@summertime4

@avmcbellar Thank you and @rwinney Good advise. I will check with the pharmacist and doctor. I don't know why I did not ask for a quick lesson so I can do this myself. Let me ask anyone who is low on B12 and injecting. My primary care doctor did not suggest B12 injections and my blood work showed normal levels. The neurologist prescribed the B12 without doing another blood test. He said that although the number is normal I may not be metabolizing or getting into my system because I had surgery on my stomach 9 years ago. I had a nisson funtalmentation? because my esophagus was being harmed by stomach acid. I do know this to be true, but didn't ask if that were going on wouldn't my B12 be under normal amount.

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@summertime4 Ahh…more to it than meets the eye.

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I have neuropathy in my feet, ankles, and lower back. The burning is so intense at times it brings me to tears. I have medical marijuana, it is an oil that you put under your tongue. I have taken a lot of it and it does nothing for me. I am thinking I need a cream to apply to my back. Has anyone experienced this? I have been to many doctors and clinics with no progress.

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Same as you! Am 68 with spinal stenosis! Had surgery, shots, creams and recently tried stimulator on spine! It works for me!

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@robtlhughes

I was diagnosed with idiopathic peripheral neuropathy about 18 months ago, primarily of the sensory kind. I've had an EMG/NCS and a plethora of blood tests. I take 600 mg of gabapentin at bedtime to help with sleep. There is no pain. But it began with uncomfortable, hard-to-describe numbness in my feet that over the past several months has crept up to my knees. After five or six hours in bed at night, my legs start to feel like they're burning, keeping me awake. Once I'm up and about it quickly and mostly disappears. My readings and Dr. Google suggest nothing can be done. The doctors around here don't disagree with that. I have an appointment at a teaching hospital in July, but because it's 500 miles away and because of the coronea virus, I'm thinking what's the point. Any experiences or advice to share will be welcomed.

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Hello @robtlhughes, Welcome to Mayo Clinic Connect. I also have idiopathic small fiber peripheral neuropathy and understand your feeling about what is next. You have taken a great first step by starting your journey of learning everything you can about your condition so that you can ask better questions and hopefully get better answers from your healthcare team or doctors. There are a few discussion here on Connect that you may want to join in and follow to learn what other members with similar symptoms have shared.

– Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
– Eliminating Foods for Neuropathy pain: https://connect.mayoclinic.org/discussion/neuropathy-pain-1/
– Ideas for pain relief from Small Fiber Neuropathy (SFN): https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

There are a couple of websites with resources for learning more about neuropathy that may be helpful for you:

– Neuropathy Commons: https://neuropathycommons.org/
– Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

I've been where you are with what's the point and all I can do is tell you it's a learning process and share my experience. Being that I let my neuropathy progress for 20+ years before seeking a diagnosis I would in retrospect would have tried to get a diagnosis sooner. Because I only had numbness with my neuropathy and I asked if I have the nerve test and you determine I have nerve damage what treatment will help with the numbness. They told me they didn't have a treatment that would help so I just let it go. The result may still have been the same for me but I would have started my learning process earlier and who knows what would have happened…I don't 🙂 One question you might ask your current doctor if you don't have pain with your neuropathy — why did they prescribe Gabapentin? When I finally started asking my care team questions and looking into the numbness in my feet and legs my primary care put me on Gabapentin. After 2 weeks and no change I met with the doctor and asked her why the was no change. She brought the other care team members and leader into the discussion and they had me describe my symptoms which were numbness only, no pain. Then they said Gabapentin only helps with the pain and does nothing for numbness so I stopped taking it. Gabapentin comes with it's own side effects which you may or may not have. Mayo Clinic has some information here: https://www.mayoclinic.org/drugs-supplements/gabapentin-oral-route/side-effects/drg-20064011

Do you have pain associated with your neuropathy?

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I was diagnosed with idiopathic peripheral neuropathy about 18 months ago, primarily of the sensory kind. I've had an EMG/NCS and a plethora of blood tests. I take 600 mg of gabapentin at bedtime to help with sleep. There is no pain. But it began with uncomfortable, hard-to-describe numbness in my feet that over the past several months has crept up to my knees. After five or six hours in bed at night, my legs start to feel like they're burning, keeping me awake. Once I'm up and about it quickly and mostly disappears. My readings and Dr. Google suggest nothing can be done. The doctors around here don't disagree with that. I have an appointment at a teaching hospital in July, but because it's 500 miles away and because of the coronea virus, I'm thinking what's the point. Any experiences or advice to share will be welcomed.

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@robtlhughes

I was diagnosed with idiopathic peripheral neuropathy about 18 months ago, primarily of the sensory kind. I've had an EMG/NCS and a plethora of blood tests. I take 600 mg of gabapentin at bedtime to help with sleep. There is no pain. But it began with uncomfortable, hard-to-describe numbness in my feet that over the past several months has crept up to my knees. After five or six hours in bed at night, my legs start to feel like they're burning, keeping me awake. Once I'm up and about it quickly and mostly disappears. My readings and Dr. Google suggest nothing can be done. The doctors around here don't disagree with that. I have an appointment at a teaching hospital in July, but because it's 500 miles away and because of the coronea virus, I'm thinking what's the point. Any experiences or advice to share will be welcomed.

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Hi @robtlhughes, I'd like to add my welcome. You'll notice that I moved your message to this existing discussion:
– Living with Neuropathy – Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I did this to introduce to all the members of the group so you can connect with other who have idiopathic peripheral neuropathy. Click VIEW & REPLY to scroll through past messages. Like you, several members experience numbness and burning, but no pain.

What do you do to relieve the burning?

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@colleenyoung

Hi @robtlhughes, I'd like to add my welcome. You'll notice that I moved your message to this existing discussion:
– Living with Neuropathy – Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I did this to introduce to all the members of the group so you can connect with other who have idiopathic peripheral neuropathy. Click VIEW & REPLY to scroll through past messages. Like you, several members experience numbness and burning, but no pain.

What do you do to relieve the burning?

Jump to this post

@robtlhughes

I started out with the tingling in my feet and legs, and after a couple of years numbness in my feet, and then the pain started. It gradually has been getting worse and become a burning pain and has spread to include the tops of my feet and most recently has moved to my ankles. It hurts and my ankles feel like I have a band around them, being stretched harder and harder.

Morphine sulfate contin and imipramine are keeping the pain manageable. Three years ago I had a spinal cord stimulator implant that gave me a lot of relief from the pain until a few weeks ago. It's been slowly losing its effectiveness over the past year. I turned the stimulator off a month ago and I haven't felt any change in my pain. So now I'm waiting to get to see the neurosurgeon. So frustrating to have my health care put on hold.

For the burning pain, I put numbing cream on my feet. I have prescription lidocaine cream, but Medicare won't cover it anymore, so I found on Amazon a product called Uber Numb, and instead of the $125 copay for the prescription it's $16 on Amazon. It helps relieve the burning for a couple of hours so I can go to sleep.

Jim

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@colleenyoung

Hi @robtlhughes, I'd like to add my welcome. You'll notice that I moved your message to this existing discussion:
– Living with Neuropathy – Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I did this to introduce to all the members of the group so you can connect with other who have idiopathic peripheral neuropathy. Click VIEW & REPLY to scroll through past messages. Like you, several members experience numbness and burning, but no pain.

What do you do to relieve the burning?

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Many thanks. In bed if I move my legs or roll over, the burning goes away for a minute or so, then roars back. Make me wonder if something else–maybe spinal stenosis–could be going on too.

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@colleenyoung

Hi @robtlhughes, I'd like to add my welcome. You'll notice that I moved your message to this existing discussion:
– Living with Neuropathy – Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I did this to introduce to all the members of the group so you can connect with other who have idiopathic peripheral neuropathy. Click VIEW & REPLY to scroll through past messages. Like you, several members experience numbness and burning, but no pain.

What do you do to relieve the burning?

Jump to this post

Good afternoon, @robtlhughes, Before my small fiber neuropathy took a firm hold of my body's efforts to function, I had a lot of burning….legs, feet, thighs, and the most treacherous, abdomen. It usually woke me up every morning like a flame from a glass fireplace that just goes along the top of the installation. Moving my body didn't help. And at that time I didn't know about using cannabis tinctures as soon as I awoke. So, I just lay there quietly until the pain that flickered right under the skin had disappeared. It usually took about 15-20 minutes.

Then, I began to use a cannabis tincture of 2:1 CBD/THC upon awakening and the fire was snuffed out. The "burn" has not come back but may have moved on to someplace else.

Right now I am "suffering" neuropathic itching. Don't worry about it yet, you won't like it.
I am throwing everything at it….including a 1:30 CBD/THC dosage that I have just started. Just know that if you get it, don't start scratching…..seek topical or internal capsule. The Connect members in the "Skin Health" group know all about it.

May you be free of suffering and the causes of suffering.
Chris

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@robtlhughes

Many thanks. In bed if I move my legs or roll over, the burning goes away for a minute or so, then roars back. Make me wonder if something else–maybe spinal stenosis–could be going on too.

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@robtlhughes

What specialists have you seen? Have you had a spinal MRI? I understand how unbearable the pain can be. One thing that puzzles me is that regardless what my feet felt during the day, as soon as I lie down, it feels like a switch was turned on and my feet suddenly hurt terribly with burning pain. When I wake up in the morning, my feet don't hurt. The same thing happens when I put my feet up in the recliner.

If you think that spinal stenosis is a contributing factor, I say have it checked. What I usually do is research online to learn all I can. @johnbishop Is really good at finding links to suggest that might give you some answers.

Keep advocating for yourself until you get a doctor's attention, a doctor who will listen to you and take your pain seriously.

Jim

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Thanks. I've seen two neurologists. Neither has been encouraging. An MRI showed some stenosis, but nothing that would justify more than physical therapy. In my 24 hours with the Mayo neurology, I have realized I am far, far from being the worst off. Thanks for your note. Bob

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@artscaping

Good afternoon, @robtlhughes, Before my small fiber neuropathy took a firm hold of my body's efforts to function, I had a lot of burning….legs, feet, thighs, and the most treacherous, abdomen. It usually woke me up every morning like a flame from a glass fireplace that just goes along the top of the installation. Moving my body didn't help. And at that time I didn't know about using cannabis tinctures as soon as I awoke. So, I just lay there quietly until the pain that flickered right under the skin had disappeared. It usually took about 15-20 minutes.

Then, I began to use a cannabis tincture of 2:1 CBD/THC upon awakening and the fire was snuffed out. The "burn" has not come back but may have moved on to someplace else.

Right now I am "suffering" neuropathic itching. Don't worry about it yet, you won't like it.
I am throwing everything at it….including a 1:30 CBD/THC dosage that I have just started. Just know that if you get it, don't start scratching…..seek topical or internal capsule. The Connect members in the "Skin Health" group know all about it.

May you be free of suffering and the causes of suffering.
Chris

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Thanks for your post and your good wishes. I've started CBD and it's helped with sleeping. Keeping my fingers crossed. Bob

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@jimhd

@robtlhughes

I started out with the tingling in my feet and legs, and after a couple of years numbness in my feet, and then the pain started. It gradually has been getting worse and become a burning pain and has spread to include the tops of my feet and most recently has moved to my ankles. It hurts and my ankles feel like I have a band around them, being stretched harder and harder.

Morphine sulfate contin and imipramine are keeping the pain manageable. Three years ago I had a spinal cord stimulator implant that gave me a lot of relief from the pain until a few weeks ago. It's been slowly losing its effectiveness over the past year. I turned the stimulator off a month ago and I haven't felt any change in my pain. So now I'm waiting to get to see the neurosurgeon. So frustrating to have my health care put on hold.

For the burning pain, I put numbing cream on my feet. I have prescription lidocaine cream, but Medicare won't cover it anymore, so I found on Amazon a product called Uber Numb, and instead of the $125 copay for the prescription it's $16 on Amazon. It helps relieve the burning for a couple of hours so I can go to sleep.

Jim

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Sounds like it's worth a try. I'm already keeping Amazon in business. Thanks and take care. Bob

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My name is Craig,
I have SFN and it is extensive over my whole body, including my scalp and hair follicles. Over time it has played havoc with my skin on my arms, neck and shoulders. The skin is discolored and burns like having a sunburn. It is very uncomfortable.
The brunt of my attacks are at night after I have been in bed and asleep for about 1 hr. Than when I re-position myself in bed the discomfort starts. A hot burning sensation all over my body. Everywhere. It is horrible. Sleep is difficult. The next day I am drained and don’t start to recover till mid morning and know I will face the same thing again when I retire for the night. Is there anyone out experiencing the intensity of such attacks of SFN in their lives? kcshoemaker

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