Living with Neuropathy - Welcome to the group

Hi my name is Hope and I am 80. I have neuropathy, but also have no cartilage in either knee. Gabaopentin does nothing. Alene works better, but not well. It is getting worse and my feet turn red and feeling is gone , but not the pain. I can step on glass and cut my foot and not even know it. Does anyone know how to stop the pain? Do chiropractors really help? I have these bands that do pulsating shocks and found them some help. I really think back and think this started years ago, my feet felt like they were asleep. I complained and was sold orthopedic shoes. I constantly was twisting my ankle and foot it felt sprung. I would fall because it gave way. This was at least 48 years ago. I was a teacher.

@johnbishop
Yes, I have severe pain after standing on my feet for 1-2 hours while shopping….i’m a shopaholic, fortunately or unfortunately I can’t drive because of the condition. I used to say to myself,”I wish I could dance again”…. Now it’s I wish I could walk again without numbness, pain , and balance problems! Biggest concern with Neurologists is they don’t exam the patient once they hear former dx of neuropathy.

Has anyone never had such severe pain that they thought about amputating their feet, (which is totally ridiculous when your pain subsides), but what pain
medication do you use?
Bobbie78

@bobbie78 You are definitely not alone. A search of Connect using "severe neuropathy pain in feet" shows 151 related discussions. Here's the search with links to each of the discussions if you want to scan through them to look what members found helpful - https://connect.mayoclinic.org/search/discussions/

Welcome Hope @hocbc, Sorry to hear you haven't found much that helps. I think the feet turning red can be an indication of a circulation or vascular problem. @tprift and @cher27 have mentioned red feet in other discussions and may have some thoughts to share with you.

Have you discussed the red feet with your primary care doctor? Do your feet feel warm or burning when they turn red?

@hocbc Hi Hope. Your post really caught my attention because I also have neuropathy and have had very painful, red, burning feet. I saw neurologists, a podiatrist, pain management and eventually a vascular specialist for years without an explanation. It was actually this Mayo Clinic forum that first introduced me to the word erythromelalgia (EM). I mentioned it to my doctor, but it still took about two years before I was finally diagnosed while I was hospitalized. I'm not saying that's what you have, but with your feet turning red and being extremely painful, I would specifically ask your doctor about it.
The fact that you can step on glass and not know you've injured yourself is also very important. Please protect and inspect your feet carefully because you've lost protective sensation. And I would definitely tell a neurologist about your much earlier history—the “asleep” feeling, your feet giving way, repeatedly twisting your ankles and falling. That's a remarkable 48-year neurological history.
I also want to caution you about procedures on already painful, neurologically abnormal feet. I went to a vascular specialist originally because my feet were turning red, not for cosmetic reasons. I had vein ablation and was not adequately warned about the possibility of irritating nearby nerves; I subsequently had two years of additional misery. Later, a foot/ankle skin biopsy was followed by severe cellulitis and a four-day hospitalization. I'm not saying these procedures are wrong for everyone, but I would ask exactly what a procedure is intended to accomplish and what the risks are in your particular situation.
Gabapentin alone wasn't enough for me either. My doctors currently have me on 2,400 mg gabapentin plus 60 mg Cymbalta, but I'm mentioning that only to suggest that there are other approaches to neuropathic pain worth discussing with your doctor—not as a recommendation for your treatment.
I hope you find some answers. This forum helped me find the word that eventually helped me find my diagnosis, and I hope mentioning EM might give you one more avenue to explore. ❤️

I am89 years old living in Denver and due to the fact that my pcp has no knowlege of nueropathy and has no idea what to do except refer me to a nuerologist. Denver has so few that there is a six monh wait to see one and then most are not taking new patients, I have had what I assumed was nuetopathy in my feet for years - i have friends who have it so know the symptoms. I only was aware of something wrong when in bed and did mention itto my pcp in Portland when I was living there but didnt make a big deal about it since i knew there was little to do from my friends plus it really wasn't a problem.

It is now years later and it has become a real problem. My calves and sometimes arms hurt - the calves feel like they are cased in cement so walking can be slow.. I have had an ultrasound of the veins inmy legs and was told there is no blockage so bottom line is I am coping as best I can without medical supervision. I found this site and there are things I can try like putting vicks on my feet at nighttime which hasnt helped and I do have some gabapentin 100mg tablets that was the only thing my pcp knew about but I dont know how much to take andmy pcp doest seem toknow either. I am unsure of what another doctor could tell me. The podiatristI went did nothing butclip my toenails and did nothing about my feet when I told them about the pain at night. The vein doctor didn't help either once it was determine that I had no clots whatever was going on was not his specialty evidently.

I am open to doing anything I can d o on y own . Thanks for listening.