Looking to connect with people who have non-diabetic neuropathy

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 was prescribed OMEPRAZOLE for about 1-2 years from a previous RANIDATIDE prescriprion that was said to be more potent. I developed sensitive peripheral neoropathy at the tip of one toe (second digit/next to great toe). The VA primary doctor has prescribed GABAPENTIN 600mg/day, which I take only prior to sleep. The irritation normally occurs while trying to fall asleep, but sometimes it can irritate while walking or other activity. I quit the OMEPRAZOLE when I found a doctorate's report that said "all the 'AZOLES" have been known in side affect to cause peripheral neoropathy. I found the professional report during a Google search, and I would like some assistance to find that article report again - and if there are any other citations about "the AZOLES" family of PPI's that can complicate a neoropathy condition. Many times now I am seriously considering an amputation rather than saturating my body with up to 1500mg GABAPENTIN + TYLENOL, ASPERIN, and NAPROXEN to boost - and 1 or 2 CYCLOBENZAPRENE that a friend provides in good faith. I get very dizzy from that necessary saturation, and still have to continually massage that toe for a temporary relief. Sometimes I'll end up not sleeping for 24 or 36 hours if I had eaten prior to taking the GABAPENTIN, or did not take enough dosage for an unsuspected severe attack. The GABAPENTIN works best on an empty stomach, and takes a good 2-4 hours to take effect. I have red pimple-like spotted elements all over my skin surface that may be a form of melitus diabeties that may also have pre-disposed me to the neoropathy via introductory affects of the OMEPRAZOLE. I will try to get a VA appointment to see a neoroligist some day, as my VA clinical primary does not have the necessary specialty of this neorologic condition.

I am also trying to connect with people who are like me.
I have peripheral neuropathy also. Non-diabetic. I have had it for 8 years. In my feet. Was being treated with chronic back pain since 2010. Started with Tramadol now I’m at Norco/Hydrocodone. When neuropathy started it drove me crazy. Pain Dr. started me on Gabapentin. All I wanted to do was sleep. He said that would go away and it has. So I’ve been taking a pain pill and Gabapentin for a long time. I’m 78 soon to be 79. I have to wear socks and shoes during the day. Can’t go barefooted. I also wear bamboo socks and will sometimes at night. Or use Voltaren on my feet before bed.
I think mine is hereditary except my older brother has it in his feet and hands from Vietnam. Agient- Orange.
Sometimes mine really drives me crazy. I take 600 3x day and the new Nurologist’s says I can increase to 900. I’m starting out at night time only.
Is this typical for any of you?

I am 45 and have non-diabetic neropathy. In my youth I was a gymnast for 10 years, and a soccer player for 10 years. At 36 I had to have 3 plates and 7 screws in my left foot to repair old injuries. I also have a total knee replacement in my right knee. Although I was fully vaccinated, I got COVID 3 times. After the last bout of it, I started getting burning, tingling, stabbing, and weird numbness (numb, but not numb) feeling. I have loss of feeling going up to my knees in both legs. I also have lower back and leg pain.
I'm adopted so it's hard to determine if it's hereditary or not. I've heard that my bio father is diabetic, but I've been tested and that is not the case. I am in no way saying COVID is to blame, but it's weird that the symptoms of neropathy inconveniently showed up just after I had it. I work out 4-5 days a week and it is painful after every workout, but I'm in pain every day whether I work out or not. So I choose to try and stay healthy.
I have been an active person my whole life and it is heartbreaking to feel this helpless to fix the debilitating daily pain. I will not do opiates, as they are only a band-aid and are more harmful to my health.
I started to see a neurologist and have tried everything drug companies offer. Lyrica, gabapentin, topicals, compounded pharmacy remedies, etc. I am a great candidate for a spinal chord stimulator, and I'm in the process of getting approved. I have done the psychological evaluation, I'm getting my MRI's (thoracic and lumbar), and have spoken to reps from Abbot and Nevro. I've decided that I'd like to try the Nevro. It is ultra high frequency and has the best results for pain relief that I've read about. I've also read that people don't feel the buzzing (MORE pins and needles feelings) that the lower frequency Abbot causes (paresthesia). I'm going this route because I want my quality of life back without the side effects of drugs that will also take away from my daily activities.
Has anyone else considered this option or has had this implant? I'm curious about your results. Or any other advice for that matter.
Thanks!

I am 45 and have non-diabetic neropathy. In my youth I was a gymnast for 10 years, and a soccer player for 10 years. At 36 I had to have 3 plates and 7 screws in my left foot to repair old injuries. I also have a total knee replacement in my right knee. Although I was fully vaccinated, I got COVID 3 times. After the last bout of it, I started getting burning, tingling, stabbing, and weird numbness (numb, but not numb) feeling. I have loss of feeling going up to my knees in both legs. I also have lower back and leg pain.
I'm adopted so it's hard to determine if it's hereditary or not. I've heard that my bio father is diabetic, but I've been tested and that is not the case. I am in no way saying COVID is to blame, but it's weird that the symptoms of neropathy inconveniently showed up just after I had it. I work out 4-5 days a week and it is painful after every workout, but I'm in pain every day whether I work out or not. So I choose to try and stay healthy.
I have been an active person my whole life and it is heartbreaking to feel this helpless to fix the debilitating daily pain. I will not do opiates, as they are only a band-aid and are more harmful to my health.
I started to see a neurologist and have tried everything drug companies offer. Lyrica, gabapentin, topicals, compounded pharmacy remedies, etc. I am a great candidate for a spinal chord stimulator, and I'm in the process of getting approved. I have done the psychological evaluation, I'm getting my MRI's (thoracic and lumbar), and have spoken to reps from Abbot and Nevro. I've decided that I'd like to try the Nevro. It is ultra high frequency and has the best results for pain relief that I've read about. I've also read that people don't feel the buzzing (MORE pins and needles feelings) that the lower frequency Abbot causes (paresthesia). I'm going this route because I want my quality of life back without the side effects of drugs that will also take away from my daily activities.
Has anyone else considered this option or has had this implant? I'm curious about your results. Or any other advice for that matter.
Thanks!

I am also trying to connect with people who are like me.
I have peripheral neuropathy also. Non-diabetic. I have had it for 8 years. In my feet. Was being treated with chronic back pain since 2010. Started with Tramadol now I’m at Norco/Hydrocodone. When neuropathy started it drove me crazy. Pain Dr. started me on Gabapentin. All I wanted to do was sleep. He said that would go away and it has. So I’ve been taking a pain pill and Gabapentin for a long time. I’m 78 soon to be 79. I have to wear socks and shoes during the day. Can’t go barefooted. I also wear bamboo socks and will sometimes at night. Or use Voltaren on my feet before bed.
I think mine is hereditary except my older brother has it in his feet and hands from Vietnam. Agient- Orange.
Sometimes mine really drives me crazy. I take 600 3x day and the new Nurologist’s says I can increase to 900. I’m starting out at night time only.
Is this typical for any of you?

I was prescribed OMEPRAZOLE for about 1-2 years from a previous RANIDATIDE prescriprion that was said to be more potent. I developed sensitive peripheral neoropathy at the tip of one toe (second digit/next to great toe). The VA primary doctor has prescribed GABAPENTIN 600mg/day, which I take only prior to sleep. The irritation normally occurs while trying to fall asleep, but sometimes it can irritate while walking or other activity. I quit the OMEPRAZOLE when I found a doctorate's report that said "all the 'AZOLES" have been known in side affect to cause peripheral neoropathy. I found the professional report during a Google search, and I would like some assistance to find that article report again - and if there are any other citations about "the AZOLES" family of PPI's that can complicate a neoropathy condition. Many times now I am seriously considering an amputation rather than saturating my body with up to 1500mg GABAPENTIN + TYLENOL, ASPERIN, and NAPROXEN to boost - and 1 or 2 CYCLOBENZAPRENE that a friend provides in good faith. I get very dizzy from that necessary saturation, and still have to continually massage that toe for a temporary relief. Sometimes I'll end up not sleeping for 24 or 36 hours if I had eaten prior to taking the GABAPENTIN, or did not take enough dosage for an unsuspected severe attack. The GABAPENTIN works best on an empty stomach, and takes a good 2-4 hours to take effect. I have red pimple-like spotted elements all over my skin surface that may be a form of melitus diabeties that may also have pre-disposed me to the neoropathy via introductory affects of the OMEPRAZOLE. I will try to get a VA appointment to see a neoroligist some day, as my VA clinical primary does not have the necessary specialty of this neorologic condition.