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Colleen Young, Connect Director avatar

Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 6 days ago | Replies (7042)

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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.

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Replies to "Hi my name is Hope and I am 80. I have neuropathy, but also have no..."

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. ❤️