Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

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

I have post-chemo treatents for S4 breast cancer that have caused neuropathy. As y'all know there is no treatment and no cure. I however have found some relief from using essential oil Frankincense & Myrrh for it. I order this from Amazon. I have also purchased CBD Balm from an approved Santa Fe dispensery for prescription grade CBD. It works well especially when traveling as the oil could leak in luggage when flying.

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@cidle3

I too had Rx with Chiropractor for $6874, It was red light, pills, spine stretching. decompression, electromagnetic Therapy, vibration therapy, Brain Body oxygen therapy. A waste of money.

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Welcome @cidle3, Unfortunately there are a lot of folks out there with so called neuropathy "cures" waiting to take your money and it's up to each of us to research and learn as much as we can about the condition and legitimate treatments that may help. NIH's National Center for Complementary and Integrative Health (NCCIH) offers guidance about integrative health and how to evaluate it.
-- https://nccih.nih.gov/health/decisions
-- https://www.nccih.nih.gov/health/pain

Also, the Foundation for Peripheral Neuropathy has a lot of information on living well with neuropathy that you might find helpful here - https://www.foundationforpn.org/living-well/.

Do you mind sharing a little more about your neuropathy diagnosis?

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@johnbishop

Welcome @cidle3, Unfortunately there are a lot of folks out there with so called neuropathy "cures" waiting to take your money and it's up to each of us to research and learn as much as we can about the condition and legitimate treatments that may help. NIH's National Center for Complementary and Integrative Health (NCCIH) offers guidance about integrative health and how to evaluate it.
-- https://nccih.nih.gov/health/decisions
-- https://www.nccih.nih.gov/health/pain

Also, the Foundation for Peripheral Neuropathy has a lot of information on living well with neuropathy that you might find helpful here - https://www.foundationforpn.org/living-well/.

Do you mind sharing a little more about your neuropathy diagnosis?

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Thank you for your response. I've had neuropathy 20 years. It began with pain and numbness in my right great toe, traveled to my left great toe and over three years it had traveled halfway up both calves, I'd experience pain, in both feet in bed at night, pain along outer aspect R lower leg, leg cramps, all were said be due to spinal stenosis by my Neurologist. I was advised to have back surgery which in 2015 and again in 2022, I'm 83 years old and have other medical issues. so I have not elected to have surgery. I am able to achieve an active exercise program at the local YMCA which I have lessened in intensity over the years but I try to get in 3 to4 times and they include Balance, Pool, exercise bike, and walking. I find I'm walking less and less as my feet become very heavy and it's an effort to move them. My back is not a persistent problem with regard to pain. I do get adjusted once a month and more often if a sciatica issue pops up, as it has twice in the last three years. other wise my back bothers me only if I'm on my feet too long and it goes away if I sit for awhile.

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Hello, I have had non diabetes peripheral neuropathy for ten years. It gets worse each year. Painful spikes in my feet toes and calf’s. Extreme itching top of my feet, ankles. Very few treatments work. On pregabalin 150 milligrams twice daily, fluocinine steroid cream, my understanding is that it gets worse and nothing to reverse damage. Avoid sugar & white flour.

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@jeffo22

Hello, I have had non diabetes peripheral neuropathy for ten years. It gets worse each year. Painful spikes in my feet toes and calf’s. Extreme itching top of my feet, ankles. Very few treatments work. On pregabalin 150 milligrams twice daily, fluocinine steroid cream, my understanding is that it gets worse and nothing to reverse damage. Avoid sugar & white flour.

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Welcome @jeffo22, Sorry to hear your neuropathy is getting worse. The Foundation for Peripheral Neuropathy has a list of complementary and alternative treatments that you might find helpful here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

Have you tried any complementary or alternative treatments?

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@jlf2

Hi my name is Jerrilyn and I have non disabilities neuropathy and am in a lot of pain sometimes in my legs and feet I’m on gabapentin 600mg 2x daily sometimes it helps and sometimes it doesn’t I would like to know what other are doing to help with the pain if you would like to share I’m interested ❤️🌼

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My name is Doug. I have idiopathic neuropathy in both feel and ankles. Like you, i am taking Gabapentin but I take 3200mg daily. I also take 10mg of oxycodone 3 times daily and 5mg of methadone 4 times daily. For the most part, this level of medication is reasonably effective but I recently had a Nevro spinal stimulator implanted. This combination is working very well most days.

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@randymor

Hello I have neuropathy in my feet and I started out on gabapentin which didn't really work, so my doctor put me on lyrica which does help
Hope this helps.
Randy

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I've had neuropathy for almost 3 years now.
At one point along with the Gabapentin I was using the lidocaine 5% gel on my toes. Well the neuropathy spread to the whole feet, so it made no sense in using a whole tube or more on each foot. So they wrote an RX for Pregabalin a year and a half ago. And so far it has done nothing. They are talking about a stimulator on my follow up appointment next month. Glad you got some relief Randy.

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@mayodoug

My name is Doug. I have idiopathic neuropathy in both feel and ankles. Like you, i am taking Gabapentin but I take 3200mg daily. I also take 10mg of oxycodone 3 times daily and 5mg of methadone 4 times daily. For the most part, this level of medication is reasonably effective but I recently had a Nevro spinal stimulator implanted. This combination is working very well most days.

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Glad to hear you have found help for it as for me that’s to much medication and I’m on a lot of other medications for other health issues it’s just to much for but I’m glad you found relief for your pain 🙏🙏❤️

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Do the bottoms of your feet swell up at night?

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@myfeetareonfire

I've had neuropathy for almost 3 years now.
At one point along with the Gabapentin I was using the lidocaine 5% gel on my toes. Well the neuropathy spread to the whole feet, so it made no sense in using a whole tube or more on each foot. So they wrote an RX for Pregabalin a year and a half ago. And so far it has done nothing. They are talking about a stimulator on my follow up appointment next month. Glad you got some relief Randy.

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I’m sorry you are not getting any relief of your pain my toes have been and I still get sharp pain sometimes it hurts so bad it’s a burning sensation but I to am hoping I can find something that works well for me so I can make some suggestions to my PCP and see what we can get going I know she’s going to send me to pain management I don’t like them they always want to give me shots they don’t work and hurt like the bajesus like with my back and hip problems I’m doing no more shots I will suffer till I find something else that works I hope your stimulated work for you keep us up to date if you don’t mind have a great evening ❤️

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