Looking to connect with people who have non-diabetic neuropathy

I just joined the forum. I was recently diagnosed with peripheral nephropathy. I was in the hospital last week the pain was so bad. They gave me a prescription for Gabapentin, that's it. Pain level is usually about 9 especially when I go to sleep.? I am using Medical Marijuana for pain, walking/exercising,eating well,and resting. I slept two 3 1/2 hour shifts last night...woke with pain in between. This is new to me. I am 70 and old age is a little different than I imagined it would be. I guess I need support from others who understand how scary and painful this illness is.

Can you send the information to me?

I just read your post about neuropathy pain and I also would like you to send me information on what helps !
Thank You,
Donald Goss

Yes, it is scary, and your inner strength is really tested by how quickly a pretty decent day, filled with cautious optimism, can end up with so much pain that I am digging through my meds, trying to find something to help! One thing that this forum has shown me in the short time I’ve been a member is that we’re all fighting the same battle.
I am 61, and had done all the right things to prepare for an excellent old age until this neuropathy hit me. I won’t bore you with all the things I’ve given up. My diagnosis is length-dependent small fiber neuropathy, most like genetic, as my sister has the same symptoms.
Because I am an RN, the best thing for me has been to keep all my medical records, and note any trends. Most importantly for me is having gained the trust of my physicians to tailor my daily meds to my needs. I see a pain doctor, and take a small dose of Percocet, 7.5 mg 1/2 tab four times daily as needed. Baclofen ( muscle relaxant) has become more useful. Gabapentin made me too drowsy. Lyrica helped but I lost my intelligence! I’m now on Tegretol, and I think it will work, once we get the dose worked out. I’m willing to try any cream, supplement, patch, socks, etc and that is how I’ve found what works for me.
My life is pretty good. Most people don’t realize I have this “invisible illness”. Doctors are still learning about it. My physical therapist is learning along with me. It definitely forces you to learn your own inner strength, but there are medications out there to ease your suffering!

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 have seen two neurologists. The first didn't seem to know or care. My primary doctor recommended a different neurologist. He was very helpful. I had never heard the term "small fiber" before and neither doctor asked about my background but I don't have a history or anything that might have caused it.
My doctor recommended nortriptyline (2 / 25mg capsules) in the evening. Now I sleep very soundly and most of the time it seems like I don't have neuropathy. Hoping it doesn't get worse.

Good evening @seniordon09......I am still here for you. However, since there are more than 200 different versions of neuropathy, I would appreciate knowing what your most annoying symptoms are at this time. Let's begin with where in your body you feel the impact of neuropathy and what, if anything, you have tried so far in hopes that it would control your discomfort.

I will jump ahead a few years and tell you that my neuropathic pain is totally controlled by medical cannabis. Two products, tinctures and topicals support a positive quality of life that I could not have imagined when I was first diagnosed 9 years ago.

My diagnosis of SFN (small fiber neuropathy) is the result of traumatic body injuries and surgeries. Do you know how neuropathy found you?

Sometimes symptoms can pop up for a while and then go away. For example, I had what felt like a burning fire in my abdomen for about 6 months. Then, I had feet so numb that I wasn't able to safely drive a car. Right now I am forcing myself to deal with the "neuropathic itch" which is by far the most annoying symptom I have had.

Let's see if we can figure out what your most irritating symptom is right now. What symptoms have come and gone already?

May you be safe, protected, and free from inner and outer harm.
Chris

I have seen two neurologists. The first didn't seem to know or care. My primary doctor recommended a different neurologist. He was very helpful. I had never heard the term "small fiber" before and neither doctor asked about my background but I don't have a history or anything that might have caused it.
My doctor recommended nortriptyline (2 / 25mg capsules) in the evening. Now I sleep very soundly and most of the time it seems like I don't have neuropathy. Hoping it doesn't get worse.