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DiscussionLooking to connect with people who have non-diabetic neuropathy
Neuropathy | Last Active: Jul 14 1:33pm | Replies (960)Comment receiving replies
Replies to "I just joined the forum. I was recently diagnosed with peripheral nephropathy. I was in the..."
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!
From what you've written here, I wonder if they gave you any other options - if the gabapentin didn't really help that much. It was the first one I was given by my primary care doctor, and it did nothing for the condition, then came the narcotics including morphine. The narcotics put me in the hospital until they got me off them and scheduled me for the pain clinic. The doc studied my case and gave me a starter dose of Amitriptyline that helped. He increased the dose that helped me considerably. My neuropathy has gotten worse, but the amitriptyline still helps.
I don't know if this helps you any. Just thought I'd share it with you.
Hello @pacodennis, Welcome to Connect. You are not alone. I'm 79 and this neuropathy crept up on me for 20+ years. For me, it's not life threatening but it does make old age a little different than I also imagined. I posted my story in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.
I do think acceptance is part of our journey and think you might find this older discussion somewhat helpful knowing what other members have shared on the topic.
-- Acceptance: Anyone have difficulty accepting new limitations daily?: https://connect.mayoclinic.org/discussion/acceptance/
It can be scary at times and one thing that I think is helpful is to learn as much as you can about your diagnosis and available treatments. Here are a couple of my favorite sites to learn more:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
It sounds like you already doing some of the more important things for living healthy. Have you done any research on complemenary or integrative therapies for neuropathy?