Looking to connect with people who have non-diabetic neuropathy

I'm wondering if the following discussion might provide another option for relief from your pain.
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.
Have you heard of or tried Myofascial Release Therapy?

Good evening @jlf2.....I was searching for a particular post and I just saw yours about Medicare.
I just might have a couple of suggestions for you. Last year I had a "heck" of a time getting coverage for a new product for neuropathic itch called Dupixent. The first thing I discovered was that this injection product was not even listed on the Medicare Formulary. I had to request a special exception just to have it placed on the Formulary "momentarily". After that was corrected, I found that the copay was way out of my monetary league.

This "itch" had been a major cause of my most difficult and fearful days. I spent time in the ER and my dermatologist even came in from her vacation to tell me to stay out of the ER and Urgent Care because they wouldn't know how to help me. She ordered a topical medication at least for my face which was inflamed and itching. She had already submitted the prescription directly to the company for approval and I was ready to go.

I happen to have a daughter who has spent 30 years working with patients in a dental surgery center. She took over the search for the copay and lo and behold she got it. I don't know all the details but I suspect there are some issues relative to those of us over the age of 60. Pharmaceutical companies need to qualify for additional research and development funding before the current products face the creation of generic copies with much lower prices.

So.....the medication was temporarily placed on the formulary and I was approved for the copay support. Whew....it took a year. The medication worked from the first time I tried it and has given me another chance at living an itch-free and therefore pleasant life. You may be able to find a way to fund your prescription by digging a little deeper.

May you be free of suffering and the causes of suffering.
Chris

I have been diagnosed with idiopathic peripheral nephropathy with pain in my feet only at night, and sometimes up my legs as well. I have tried Gralise, which worked but my insurance company would no longer pay for this medication. I've tried Metanx as well and that also worked and my symptoms went away. Now my symptoms are back and I'm using CBD oil on my feet at night. This helped for a while, but now I am experiencing pain in my feet during the day as well. I'm at a loss at to what to try next because I have also tried Gabapentin 100 mg, and I am loathe to try a bigger dose because of serious side effects. Also, I read that the Covid 19 vaccine can exacerbate PN, and I'm wondering if that is the cause of renewed PN. Whatever the cause of the renewed pain, I'd like to find some treatment that will reduce or eliminate the pain so that I can sleep at night.

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.

Hello @user_ch98d0b5c -- I read from your earlier post that you do not know what the cause is for your peripheral neuropathy. I also have idiopathic small fiber peripheral neuropathy. They suspect hereditary but don't know. You also mentioned you have an upcoming appointment at John Hopkins with Dr. Hoke in September. I know it must be frustrating waiting and wanting some answers.

@user_ch98d0b5c have you found anything that helps with the pain?

I've found that I always wear socks, even at night. I mainly do this because I can't tell if my feet have been injured when I step on something walking around the house. I've found that socks made with bamboo fiber are really soft, stretchy and very easy to put on and take off. I guess they probably wouldn't help you if you can only wear flip flops. Have you tried any kind of shoe that doesn't cause you pain?

I was not sure by the title of your discussion if you were trying to locate members who do not have diabetic neuropathy or that do have diabetic neuropathy?

John

I do NOT have diabetes or the pain, except from my arthritis. That I control with Advil, Extra Strength Tylenol, Creams for controlling Arthritis Pain.
But the Neuropathy has advanced from feet to upper thighs with the heavy feelings, standing on sandpaper, extra sensitivity to cold, and the feel of feet and legs being asleep with no control when walking. Advice from my Primary Doctor was to see a Neurologist.