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I’m familiar with this forum because I’m a fulltime caregiver to my mom, who lives with my husband and I, and has late stage Alzheimer’s. So, I’m asking for any suggestions because it’s me who suffers from it. Help!

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I have peripheral neuropathy from toes to my knees in both legs. I take as little medication as possible because the effect wears off after awhile and have to switch to another medication. I don’t use opioids and I didn’t find gabapentin or Lyrica helpful. I take 50 mg of amitriptyline at bedtime. I also ice my feet in the evening which helps. I keep my blood sugars at the right level. I follow my ADA diet strictly, keep a1C level below 5. I don’t want anymore heart problems than I already have. It’s hard but I try to walk 4 or 5 miles a day. My balance is terrible and I fall regularly. The pain is bad but I find toughing it out is easier than taking medications. I’ve heard people talking about taking various vitamins, but I didn’t get any help with those. I also use a whirlpool bath regularly and also a hot tub (but keep the water temperature cool). Occasionally use Lidocaine patches or lidocaine gel, both prescription strength. OTC patches and cream are ineffective.
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LeBronFan May 2019
My heart goes out to you for you and your struggle and i totally respect your decision not to take any medication. I wish you all the best and pray you are blessed with some relief.
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I always wondered if my Mom roller skating in the late 30s and 40s had anything to do with her neuropathy. Her's was in her ankles and you use them skating. She went at least 4x a week. When Mom fell, she went down like a lead balloon.
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Both my dad (deceased) and my mom (92) have non-diabetic neuropathy for some odd reason. Mom's is so severe that she can barely walk; uses a walker but really needs a wheelchair, imo. Too much Gabapentin caused her vertigo to get even worse than it already is, which is hard to imagine, so her dose was lowered to practically nothing. It didn't make a difference, really, she still suffers the same now as she did while on the high doses. The neurologist says there is nothing that can be done for neuropathy......nerve damage is irreparable and something a person has to deal with, I guess. Mom has insisted there is an 'answer' for out there, and has been schlepping around to doctors for decades, but the results are always the same: there is nothing anyone can do except write prescriptions. It's a lot, I know, especially when combined with the dementia/AZ aspect. Sigh. My mother has fallen no less than 3 dozen times over the past few years, twice in the past month alone, because she can't feel her feet. The imbalance issue causes the vertigo and the whole thing is a giant MESS!

The one thing she claims DOES help her a bit is a cream called Penetrex which you can order on Amazon; I get it for her in a 3 pack: https://www.amazon.com/gp/product/B01DE8KXQU/ref=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&psc=1

Wishing you the best of luck dealing with all that's on your plate, my friend.
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LeBronFan May 2019
Wow! You are the first person I have ever heard of that both parents had non-diabetic neuropathy! Sorry to hear the loss of your father. My father passed 2 years ago May of this year. He had diabetes Type II and spent nearly 6 years on dialysis and when he died it was of kidney failure. He had horrible diabetic neuropathy! I felt incredibly bad for him and then ironically I get Diabetes Type II also along with the diabetic neuropathy. It’s been dibilatating at times, very painful and aggravating because there is no cure and people have a hard time relating because they don’t think it’s legitimate! I take 2400mg of Gabapentin a day just to ward of the painful enemy, plus 1000mg of Glucophage(Metformin) and try to watch what I eat. My sugar has been under control for a while now but the damage is done. Thanks for the input and yes my plate is full with a husband and a mother with late stage Alzheimer’s who lives with us! Ah, but life goes on.....
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My former mil used a cream that contains CBD oil. It helps her in addition to her gabapentin.

it is legal to use in Canada.
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I was caregiver for a diabetic man. He had untreated insulin dependent diabetes for years! Anyway, he have sever nerve damage in his legs and took 3600 mil of gabapentin daily, Yeah, 3600.

It took that to control it. He was afraid of lyrica because of the serious drug dependency the labels warned about. Also, he worried about reported issues of escalating dementia.

The damage that that causes nerve damage is causing lots of damage to all the internal organs. He died in his late 50s, because of all that damage done by sugar all those years.

PS... one side benefit to gabapentin is that it is also a mood stabilizer.
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LeBronFan May 2019
I tried Gabapentin first, then thinking newer would work better, tried Lyrica. It didn’t work for me so now I take 2400mg of Gabapentin a day to control my pain. It’s horrible! Sometimes my feet hurt so bad I can’t walk.
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There's also Lyrica, which is a spin off of gabapentin. It may work better for you. DH can't stand anything tight on his ankles and calves so we found diabetic ankle socks with wide, soft cuffs. Peripheral neuropathy can be caused by other things (not just diabetes) - for DH, it was a side effect of meds.
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LeBronFan May 2019
Well, unfortunately, mine is definitely from very many years as an undiagnosed hyperglycemic. I am a Diabetic Type II on Tresiba and Glucophage plus Gabapentin for my Diabetic Neuropathy. It’s very painful still and no cure. My sugars under control now but nerves still need to heal. Thanks for your response.
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My Mom had neuropathy and doctor said its damaged nerves and may take 2 or 3 yrs rejuvenate. She wasn't a diabetic.

I don't think there is really anything you can do. Its part of being a diabetic. Maybe another member can help.
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LeBronFan May 2019
Any insight is helpful. Thank you for your time.
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