Living with Neuropathy - Welcome to the group

Hi Mike @fluffy10, Welcome to Connect. PHN is under the Neuropathy group. There are several discussions that might be helpful:
-- Shingles and Postherpetic Neuralgia and Pain: https://connect.mayoclinic.org/discussion/shingles-and-neuropathic-pain/
-- Postherpetic neuralgia from Shingles: Low Level Laser Therapy: https://connect.mayoclinic.org/discussion/chronic-phn-from-shingles-red-light-cold-laser-therapy/.
-- Postherpetic Neuralgia (Shingles) nerve damage: https://connect.mayoclinic.org/discussion/postherpetic-neuralgia-shingles-nerve-damage-around-eye-eyebrow-forehead-scalp-8/.

According to the CDC - "The most common complication of shingles is long-term nerve pain called postherpetic neuralgia (PHN)." -- https://www.cdc.gov/shingles/about/complications.html.

Do have PHN from shingles?

Hi @gleng, I’m in the same boat and don’t have a solution. I’ve tried a few things with mixed results.
- just keep walking, as others have suggested.
- switching some part of my exercise to things that are easier on the feet. I’ve tried cycling (regular and stationary) and joined a gym for elliptical and rowing machines
- wearing extra thick socks. You can find some that are thicker on the bottom but they’re probably not going to be cheap.
- putting more rugs around the house to help recovery between walking sessions.

For me, walking in nature is my main form of physical and mental therapy so I really don’t want to give it up.

Best of luck with everything.

Happy I found this group! My husband suffers from severe neuropathy. Healthy 71 male. I thought I could easily make an appt at Mayo Jacksonville to see a neurosurgeon. His GP thinks it’s related to back issues. I was shocked to hear they weren’t accepting any new patients at this time. No where to turn at this point. Hoping to learn from this group

Welcome @dw9050, I sorry to hear that you weren't able to schedule an appointment for your husband to see a neurosurgeon. You mentioned his GP thinks it's related to his back issues. You might see if your GP could try setting up referral related to your husbands back issues which may be another way of getting an appointment and seeking some answers for the neuropathy pain.

There is another discussion that you might find helpful if your husbands pain is connected with nerve compression in the back.
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.

If you want to learn more about neuropathy and different treatments available, the Foundation for Peripheral Neuropathy is a good place to start -- https://www.foundationforpn.org/living-well/.

You mentioned he suffers from severe neuropathy. Are you able to share a little more about his diagnosis and neuropathy symptoms?

Your last paragraph makes me sad, because walking in nature, along with gardening, are my main sources of pleasure. A year ago I did a 2 mile hike near my house once a week. I also prepped and planted all my flower beds.
I last tried the hike a month ago (sheer stubbornness) and it was painful from the first step. I grimly pushed on. I’ve also tried walking in my neighborhood recently, just a mile. Every body part involved in walking, from my waist down, hurts the entire time. Of course I was in a lot of pain for several days afterward, worse than usual. Hobbling. Struggling to get up steps.
This is a progressive disease. It sucks.

I had some success with Sanexas Treatments. I'm certain that my experience is different than most, but may help someone.

The background is that I suffered severely from lower back pain for years. I had a 4 level PCL in 2010 and an L3-L4 Fusion in 2014. Pain was improved a little after surgery, and I was able to get around better. But, ~ 2016 I started having problems with balance and was unable to lift up on the balls of my feet. I was diagnosed with Peripheral Neuropathy by the Veterans Administration (also where I got the surgeries.) A neurologist performed the "conduction" tests only, and called it idiopathic hereditary peripheral neuropathy like CMT. I later had blood tests to rule out 35 kinds of neuropathy, including CMT, and was told my problems were probably a combination of neuropathy and nerve problems from L3-4.

Finally, to Sanexas. Knowing that my back was probably part of the problem, I asked if I could have the B12 injections and electrode treatment on the lower back. They agreed, and set me up with a PT who used dry needling for the "pins and needles" in my feet and exercise to loosen up the lumbar and increase stability. I had 20 treatments of Sanexas and 20 sessions of dry needling with exercise supervision.
The good news is that for more than a year, I haven't gotten "pins and needles" in my feet. They were the worst, because no amount of massage, itching, etc. would get rid of it. I found out, later, that some people use Aspercreme with Lidocaine for that issue, but I don't know if it would have worked for me.

The bad news is that I still cannot lift myself even a millimeter onto the balls of my feet. The stretching and stability exercises help with muscle tightness and balance, though.

Medicare covered 100% of the cost of the 20 Sanexas and PT treatments. I don't know how. But I was so worried about payment that I made them give me a statement specifying 100% coverage. Twenty treatments was the limit for Medicare. I would love to see if more treatments could help my strength problem. I want to get a portable unit like "tens" that uses the same sine wave as Sanexas.

Neuropathy can be caused by back problems, so I would suggest doing some homework prior to getting treatments. A small change may reap rewards. Good Luck to everyone that suffers.

I was told I had CRPS which expresses itself with increasing numbness and painful tingling in my lower extremities. How can I beat this?

Thank you the welcome. I am 86 years young and was diagnosed with neuropathy 40 years ago. Since then 25 years aginI diagnosed with chronic back pain due to trapped and seized nerves. Last year I was a candidate for back surgery but it was discovered I had osteoporosis even in my jaw bones and the bones were not struck enough to hold the screws. I am never without pain, have tried Lyrica, endep, and pregablin for the nerve pain but they all interfered with my head I was foggy headed all the time. A naturopath I consulted recommended Tumeric and Lipoec but here in Australia the latter is very hard to purchase. Is there anything else? My GP is inclined to downplay the pain I have and is inclined to put all discomfort down to the back issues. Even though I have physio weekly, an hour’s exercise every morning and a 20 minute or walk every day I do not know what else to do. I am gradually losing mobility. I am not looking for a cure, that would be great but how to manage my condition. Thank you for the opportunity to describe my health issues,
K e

Welcome @decrepit, Such great advice about doing some homework prior to getting treatments for neuropathy. There are a lot of businesses out there selling hope in the form of a cure for neuropathy when there is none. We just have to find something that provides relief from our neuropathy symptoms.

@duquer also shared his story of how Sanexas helped him and may have some thoughts or suggestions. He shared his story here - https://connect.mayoclinic.org/comment/645606/.

You mentioned PT treatments. Have you had any PT sessions to help you work on strength building?

Welcome @sunshine4me, I'm sorry to hear you have CRPS that seems to be getting worse. There is another discussion which I think you might find helpful on CRPS.

-- Want to talk with others. Have you found relief from CRPS?
https://connect.mayoclinic.org/discussion/crps-2/.

Have you looked into any pain management programs?