Anyone here dealing with peripheral neuropathy?
Interested in more discussions like this? Go to the Neuropathy Support Group.
I’ve had PN for about six years, mainly on my left foot. I don’t have pain, just numbness. Of course, I’ve been taking the go-to drug, Gabapentin. When my neurologist first put me on Gabapentin, he did mention Lyrica as an alternative. However, I know I cannot drink alcohol on Lyrica, and I do like a glass (or two – 😱) of wine at night.
My problem with Gabapentin is that it does absolutely nothing for my numbness, and herein lies the problem! I’ve never really had pain with my PN, just the numbness.
Until last February, I’d been using a cane; however I’m now on a walker because I fell and broke my hip in three places. When it rains, it pours, but that’s a story for another day…..
I’ve been told vitamin B12 shots will help with the PN. I have an appointment with my primary care doctor Thursday, so I think I’ll try to start those.
Anyone else have more suggestions for this numbness?
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Hi @wascaly – I think you might want to have a discussion with your neurologist or doctor about stopping gabapentin as it is only used to treat the pain caused by neuropathy and does nothing for numbness. There are no drugs that help with neuropathy numbness. Before I was diagnosed with idiopathic peripheral neuropathy, my primary care doc had me on gabapentin for a couple of weeks and I told her it wasn't helping with my numbness. She consulted with her Mayo doctor team and they told me it only works for pain. I was later diagnosed by a Mayo neurologist and he said the same thing, there are no drugs or topicals that help with numbness from neuropathy.
You might find some suggestions in another discussion here:
— Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
Thanks. I used you link and looked it up. Sounds great and it would be something I definitely would do if I were younger. At my age  and with my health conditions, if I tried that, I might never be able to get up! LOL! 😉🤣 But, it looks wonderful and I am sure it would be helpful if I could accomplish it. Sadly I know I could not. I struggle intensely getting up from going down on the floor in any position, or even down to my knees! But, thanks for the info. I appreciate your help.
You and me both.
Thanks, John, I appreciate your response. I’ll certainly check out the link you sent. I’ve struggled with this numbness for a long time. I see others have, as well, and that reinforces the fact I’m certainly not alone.
As I mentioned in my post, a few people have told me B12 shots (not the pills) helped their PN. Have you heard that as well AND do you know if frostbite could play a role in PN?
We were stationed in Germany in 1984 when my hands (and feet) suffered frostbite. Just wondering if that might have anything to do with anything….?
I have been taking supplements that include B12 since 2016 and I do believe it has given me some of my feeling back in the feet but they still feel a little numb. This is what I take and a reference for how it works for helping neuropathy.
Methylcobalamin B12 4000 mcg – Methylcobalamin helps in the synthesis of neuronal lipids, regeneration of axonal nerves and has neuroprotective activity, which promote neurons to function in proper way and thus improves Alzheimer disease, Parkinsonism, Dementia and neuropathic syndromes. It is an approved treatment for peripheral neuropathy. https://austinpublishinggroup.com/pharmacology-therapeutics/fulltext/ajpt-v3-id1076.php.
I think frostbite could definitely play a role if it damaged some of the nerves. Here's a reference that talks about it.
— Long-Term Sequelae of Frostbite—A Scoping Review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8465633/
I'm not sure about B12 injections unless you have a B12 deficiency. It would be a good thing to discuss with your doctor or neurologist.
Thank you for your response. I was Dx'd with PN years ago, and it has gradually gotten worse, but it is to the point that it really bothers me. I have the numbness all the time, so yes, I have numbness with the color. But, I only notice the color changes in the shower. That could be because I am standing on my own [w/o cane] for probably the longest period of time that I stand? I have the pins and needles in my feet and a gritty feeling on the bottom of my feet when I walk. My PN is up to just under my knees and there is like a "line" just under my knees, where the PN is up to, and the skin below that line is much whiter and has a completely different feel than the skin elsewhere on my body. My calves and feet are nearly always swollen, but at times my ankles and feet are extremely swollen. [Almost like a cardia involvement] I am up to 1800 -2300mg of Gabapentin a day and take 2 x-strength Tylenol with each dose of Gaba. The relief is not long, but I cannot go over 2300 mg Gaba because I also have an involuntary neurological body movement and it causes me to fall. [I'm a MESS!😉] I haven't found any topicals that help. Thanks again for your empathy and offer to help. I appreciate that very much. I wish I could get a Dr to take as much interest as you! 😊
Have you ever been to a vascular surgeon to check out the circulation in your calves? On a suggestion I did and am so happy to report that my pain in my legs is Not from my PN. An angiogram is scheduled & hopefully the leg issue will be a thing of the past. Good luck to you & everyone trying to rid themselves of this relentless issue of PN.
I have been dealing with painful peripheral neuropathy for about 10 to 12
years. My main pain is in the bottoms of my feet but the neuropathy has
worked up to my knees. You talk about a frustrating experience. I
have tried every prescription, compounds, Anodyne therapy, Acupuncture and
Spinal Cord Stimulator. I am on a new and improved Spinal Cord Stimulator
now. I was told when all else fails the last thing they can do is a Pain
Pump. Well I have had that for about 2 years and get a steady dose of
Hydromorphone, Fentanyl and Bupivicaine every day, all day long. I can
also take up to 4 Hydrocodone a day and I also take Lyrica. I have had
Bilateral Endovenous Laser Ablation in both legs and Tarsal Tunnel surgery
on both ankles.
My average pain level is 5 to 6 every day. Now my only hope is that one
of the programs of the new Spinal Cord Stimulator will help. I am
seriously considering going to Mayo Clinic. Would be an expensive trip
No, not really expensive – Mayo is also in AZ. Make a little trip out of it and enjoy the scenery!
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
Hi, I have had neuropathy for 3 years. It came from one sugar spike from diabetes at the beginning of the pandemic. I keep my sugars well in check but the neuropathy is now going up my legs. Very scared. I'm so glad I found this forum. Thanks
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