Living with Neuropathy - Welcome to the group

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.

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?

@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

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.

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

@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

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

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

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

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