1. < Neuropathy

Neuropathy Feet and legs

Posted by danwealthy @danwealthy, Oct 6, 2022

Hi my feet and legs are like on pin and needles. I have lower back issues L4-L5 which shots in the low back have been unsuccessful. One of my doctors advised me to get some cream or something that has Capsaicin in it to help bloc the nerve signal. The one I choose was PainBloc 24 unfortunately they have stopped production. Im looking for anything I can replace it with any suggestions? I want a roll on or spray because I cant reach my back with a frozen shoulder!

Interested in more discussions like this? Go to the Neuropathy Support Group.

fisbo | @fisbo | Oct 9, 2022
In reply to @johnbishop "Hi @fisbo, I know it's not easy to live with chronic pain and it's definitely difficult..." + (show)
@johnbishop

Hi @fisbo, I know it's not easy to live with chronic pain and it's definitely difficult to be positive with so much pain. A lot of us have issues trying to deal with neuropathy and adjusting to our for lack of better words - new normal. There is an older discussion where members have shared their thoughts on the topic and might provide some help while you are searching for treatments that provide some relief.

-- Have You Made Any Kind of Peace With Having Your Neuropathy?:
https://connect.mayoclinic.org/discussion/have-you-made-any-kind-of-peace-with-having-your-neuropathy/
A few years ago I found a TED Talk by Dr. Amit Sood that gave me a new perspective along with some humor. I thought you might enjoy it also.
-- Happy Brain: How to Overcome Our Neural Predispositions to Suffering | Amit Sood, MD | TEDxUNI: https://youtu.be/KZIGekgoaz4

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Thank you so much I have not accepted it really. I just want things to be as they once were but alas. I will read what you have sent me

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jenatsky | @jenatsky | Oct 9, 2022

I saw in a past post of yours that you are being treated by your GP for this intractable pain? Have you seen anyone else too?

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fala | @fala | Oct 9, 2022

Yep, everyone is different. The reason I comment is for the "newbies" There are a few folks that don't have pain, but the ones that do, never have the same degree or explanation of the pain. I have tried many different creams until the one that worked for me was found. (THC) We all experiment...we have to. I want to warn those who are trying this and that to be careful. With severe PN in my feet, I once tried Capsaicin. The excruciating pain from that put me QUICKLY on the side of the tub, with a bottle of Dawn, a soft brush with the warm water running until I scrubbed and rinsed over and over. Don't try it and leave the house, (just in case! ) I WISH there was a universal solution to share...but here we go again with the "everyone is different" phrase!
Best wishes to all!

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rebsue | @rebsue | Oct 10, 2022

I am 18 months post a vertebral artery dissection resulting in a stroke. I've recovered extremely well from the stroke, but have developed burning pain in my legs and bottoms of my feet bilaterally, (all other symptoms are with my affected side only). I've been to an expert neurologist at UCHealth in Denver and just met with one at UCSF neuro rehab. (I live in rural Montana, where there is no longer a neurologist.)

Both experts could not explain my symptoms as a result of the stroke, and presentation is not aligned with a diagnosis of neuropathy. Denver doctor wanted to rule out other neural causes and I've had extensive blood work which rules out toxins, MM, leukemia, etc. I've been up and down on gabapentin and it's been recommended to take cymbalta or similar medication.

The neurologist at UCSF has scheduled me to return for an EMG and told me it would definitively rule out neuropathy. (He also wants a spinal MRI done to rule out tumor.) My local physiatrist told me that small fiber neuropathy can not be ruled out by an EMG. (As I've read through the Mayo posts here, she appears to be correct.)

Everything I've read indicates that even if a diagnosis of SFN is made (guessing the punch biopsy is next), there is no treatment other than the aforementioned recommendation of gabapentin or Lyrica, and a low-dose antidepressant.

I am seriously considering cancelling the EMG and MRI in December. I know it is the physician's job to leave no stone unturned in zeroing in on a diagnosis, but if the results do not point to a different treatment, I am reluctant to go down this rabbit hole. I am 75 years old, and want to focus on living the best life I can, enjoying everything possible. I have improved so much since my stroke (I work very hard at it!) and can accept that my damaged brain is sending out strange signals, and that maybe the power of neuroplasticity will continue to re-wire and my neuropathy symptoms will lessen over time.

I would love it if any of you would share your thoughts, as I think about this decision of testing. Thanks! Rebecca

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1 reply
oliviaflickamay | @oliviaflickamay | Oct 10, 2022
In reply to @njed "to fala - When you posted - we are all so different - talk about hitting..." + (show)
@njed

to fala - When you posted - we are all so different - talk about hitting the nail on the head! So true, a med or treatment might help 10 people out of 100. The 90 other people wonder why a certain drug or treatment did not work for them. We with PN have such different causes and such different symptoms. The trial and error as you mention is needed. We all need to find what might give us some degree of relief. There is no one magic pill for a cure. Meanwhile, sharing information is helpful and for now, if each person can find something that helps to improve their life style while living with PN, then that is a step in the right direction. Best to all! Ed

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My years of progressively worsening PN turned out to be caused by Amlodipine. All gone now. (Keep searching for the right answer).

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3 replies
johnmacc | @johnmacc | Oct 10, 2022
In reply to @johnbishop "Hi @fisbo, I know it's not easy to live with chronic pain and it's definitely difficult..." + (show)
@johnbishop

Hi @fisbo, I know it's not easy to live with chronic pain and it's definitely difficult to be positive with so much pain. A lot of us have issues trying to deal with neuropathy and adjusting to our for lack of better words - new normal. There is an older discussion where members have shared their thoughts on the topic and might provide some help while you are searching for treatments that provide some relief.

-- Have You Made Any Kind of Peace With Having Your Neuropathy?:
https://connect.mayoclinic.org/discussion/have-you-made-any-kind-of-peace-with-having-your-neuropathy/
A few years ago I found a TED Talk by Dr. Amit Sood that gave me a new perspective along with some humor. I thought you might enjoy it also.
-- Happy Brain: How to Overcome Our Neural Predispositions to Suffering | Amit Sood, MD | TEDxUNI: https://youtu.be/KZIGekgoaz4

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John, would you mind sharing the brand name of the r aka that you use and where you buy it. Thanks, Johnmacc

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1 reply
johnmacc | @johnmacc | Oct 10, 2022
In reply to @johnmacc "John, would you mind sharing the brand name of the r aka that you use and..." + (show)
@johnmacc

John, would you mind sharing the brand name of the r aka that you use and where you buy it. Thanks, Johnmacc

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I mean r ala of course 😂

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1 reply
andyoman50 | @andyoman50 | Oct 10, 2022
In reply to @fisbo "What does the THX cream do and what does it stand for. I have severe PN..." + (show)
@fisbo

What does the THX cream do and what does it stand for. I have severe PN in feet and lowerlegs. Severe pain and need something that will work

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First, I used SalonPas (Lidocaine) patches, and now I use a cannabis salve and a hand-held massager. My pedicurist taught me to do leg massages to increase blood flow. That helps me every day. Talk to your doctor about cannabis. It has helped me a lot.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 10, 2022
In reply to @johnmacc "I mean r ala of course 😂" + (show)
@johnmacc

I mean r ala of course 😂

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The R-ALA that I'm using is from GeroNova Research. The 300 mg capsules are currently unavailable on Amazon but they do have the R-ALA in 100 mg capsules. I take two 300 mg capsules in the morning and two at night (1200 mg). - https://www.amazon.com/Geronova-Research-R-Lipoic-Acid-Vcaps/dp/B003JOBJ5O/ref=sr_1_3.

I get the R-ALA as part of the Protocol 525 supplements - https://theprotocol525.com/

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1 reply
fisbo | @fisbo | Oct 10, 2022
In reply to @andyoman50 "First, I used SalonPas (Lidocaine) patches, and now I use a cannabis salve and a hand-held..." + (show)
@andyoman50

First, I used SalonPas (Lidocaine) patches, and now I use a cannabis salve and a hand-held massager. My pedicurist taught me to do leg massages to increase blood flow. That helps me every day. Talk to your doctor about cannabis. It has helped me a lot.

Jump to this post

Thank you I will talk to doctor

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