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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 17 hours ago | Replies (6026)Comment receiving replies
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?
Replies to "Hi @robtlhughes, I'd like to add my welcome. You'll notice that I moved your message to..."
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
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@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