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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 5 hours ago | Replies (6025)

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@imagine1

Hi, I'm Dawn. Diagnosed (after several doctor visits and tests) with peripheral polyneuropathy, which has become much worse over the last year. Have a lot of balance issues and fall fairly frequently. Try to get exercise by going up and down shopping aisles (because I can hang on to the cart and pretend I'm walking somewhat normally), but if I do too much of that, I'm awake all night because of unrelenting pain in my legs. Does anyone else experience that? On Gabapentin, but not sure how much it helps. So glad to find this forum for support and information. What a frustrating diagnosis! The neurologist essentially said, don't know why you have it but that doesn't make much difference - there's not a lot you can do about it.

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Replies to "Hi, I'm Dawn. Diagnosed (after several doctor visits and tests) with peripheral polyneuropathy, which has become..."

Hi Dawn @imagine1, Welcome to Connect. I have to be careful with balance myself. I haven't fallen but a few times the past few years but I'm always conscious that it could happen and have become an expert in the senior shuffle, especially during the winter time. There are a couple of other discussions where members have discussed balance issues and might be helpful.
--- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/
--- Anyone try Tai Chi to help with neuropathy and balance?: https://connect.mayoclinic.org/discussion/anyona-try-tai-chi/.

The Foundation for Peripheral Neuropathy has a lot of information that might help you learn about available treatment options and learning more about neuropathy - https://www.foundationforpn.org/living-well/.

I don't have the pain with my neuropathy but do have some numbness and tingling. It has been helpful for me to keep the skin on my legs from drying out too much by putting a hydrating lotion on every night and then putting socks on. I have used different lotions but one of my favorites is Life Flo Magnesium lotion as it seems to make my legs feel a little better.

What is your number 1 annoyance with neuropathy?

@imagine1
Hello Dawn,
I read your post and first I want to say I am sorry you have neuropathy, it can very very painful at times and challenging to life. You asked if anyone had experience with gabapentin, I have CIDP and that also comes with a great deal of pain and I have been taking gabapentin for about two years now. I have to say in the beginning it didn’t seem to help much but I have had my dosage increased a few times and now the pain has substantially decreased. One important thing that I have learned is to take the medication routinely as close to eight hours apart as possible.
If I get busy and don’t take the medication on time the pain gets severe and it is difficult to get back under control. I also feel that it took several months
for the pain to subside. I find that being active, attempting to decrease my sugar intake and getting my IGG infusion as scheduled also makes life better. I do hope you fell better in the future. Keep us posted.
Kim

Hi Dawn, I'm so happy to be in this group with others who know and feel what I'm going thru. Diagnosed just last week with bilateral peripheral polyneuropathy. Not a diabetic, perfectly healthy otherwise. Now I'm suffering 24/7 with leg pain and tingling, difficulty walking...not with balancing but because of pain. Followed up today with Dr. who told me there's no cure. I'm still in denial but coming to terms slowly.

Hi, Dawn. Welcome! I read your post with a bit of a smile as I just got back from the supermarket, where I spent the past three-quarters of an hour pushing a cart up and down the aisles. Mine is an idiopathic neuropathy, and my neurologist, like yours, was at a loss to give advice. He also didn't seem too interested in puzzling out the cause. At first, that frustrated me. But he's a good guy and otherwise appears 100% committed to helping me. Our last meeting was a month ago. Since that time, I've been doing a lot of self-educating, trying to learn as much as I can about idiopathic neuropathies. (I realize that sounds self-defeating: idiopathic neuropathies wouldn't be called idiopathic if there was much to learn!). However, studying my condition has helped me put together a bunch of good questions to ask my neurologist (at least, I hope they're good questions). This morning I phoned him and made arrangements to meet in a few weeks' time for the two of us to go over my questions. Frankly, at the moment, I can't think of much else to do to keep my spirits up other than to pursue a cause, even if, once found, knowing the cause is of no help. If you've not yet visited their site, you might want to check out the Foundation for Peripheral Neuropathy; also (and maybe especially) the Foundation's YouTube site, where you'll find dozens of informative videos. Good luck to you! And again, welcome! ––Ray (@ray666)