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← Return to Unbearable Neuropathy
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Hi Ray, That's great you found a caring neurologist who can really help, and wish you all the best.
I've been through such a herd of orthopedic surgeons, pain specialists, and early on did see a neurologist who was absolutely no help at all.
But I did find (on my own) where a lot of the pain is coming from - it's called pes cavus, another neurological disorder. It's a foot with an abnormally high plantar longitudinal arch. It can be straightened through surgery, but due to other procedures, and the fact I have a highly sensitive foot, that isn't an option. So along with contracture of the plantar fascia and cockup deformity of the big toe, I can only hope it doesn't get worse. Orthotics don't help nor Pregabalin with the pain. Tried compression socks, and they help relieve the pressure from my high arches, and increase blood flow, but I don't know about wearing them all day. Just sick about it really as I was like you, so active in the past and now I have little incentive left.
Do go on my stationary bike, but life just isn't the same without the freedom of motion.
Your positivity, though, is encouraging to hear, and always glad to read your posts. Shall update in future if this deformity can somehow be corrected. My best to you also.
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Hi, Louise
"Herd" of doctors is right! That's how I felt; I'd look at my month's calendar and think, "How did I ever manage to accumulate so many doctors?" Most every appointment was a "follow-up," and I'd long since learned what most follow-ups mean: you meet with the doctor, you tell him about any changes since the previous follow-up, and then the doctor says, "Sounds good, Ray. Let's do another follow-up in six months." It can be quite dizzying. Discouraging, too.
Did I mention my three-ring binder in my earlier post – the binder in which I'm collecting the best information I can find on the very few genuinely authoritative websites about my condition? I was explaining to my partner only last evening that I'm doing this not to "out-talk" my doctors (I'd never want to do that) but only so that I can be a fully-educated layperson about my condition and then, when I sit with my doctors, ask good and meaningful (helpful, too, to the doctor) questions.
Your saying how you miss the "freedom of motion" on your stationary bike put a smile on my face – a smile of shared sadness because I knew exactly what you meant. I used to be a big-time distance runner; when I had a knee replacement and had to give up running, I took up cycling as a replacement – outdoor cycling ("real" cycling! LOL) – but caught myself complaining to friends how cycling wasn't the same as running. Why? Because I missed the "freedom of motion." Now that I can no longer ride my bicycle outdoors but instead have to content myself with my stationary bike, I'm again telling friends I miss the "freedom of motion" I used to enjoy cycling outdoors. It's easy to think: Our lives keep getting narrower and narrower. LOL
My very best to you, Louise.
Cheers!
Ray