T1D neuropathy

2 years ago, i broke 5 metatarsels bones and my ankle in my left foot. i was in 3 different casts with crutches for 8 months, homebound. shortly after the break, i developed terrible neuropathy from my foot up to my lower ankle. it was painful and frightening. all i could think about during my way-too-long recovery was that my foot was going to need to be amputated (my uncle had had this problem).

now, from time to time, i continue to get the neuropathy in that left foot. i have never fully recovered from it. i try to massage it, but that doesn’t work. i even jump up and down on it, like what you do when your foot falls asleep. no go.

anyone experience this themselves?

I have neuropathy pain and I was taking b12 methylcobalimin lozenges and folic acid- high doses, but now I’m going to get some thyroid testing done so I’ve stopped those for a while. I think alpha lipoic acid may help too. Mine is a bit confusing because I had blood clots so that could be involved also. I read on a thyroid site high levels of folic acid for too long can be bad for you so if I continue that I will do lower doses.

I take alphic Lipoic acid, l-carnitine by doctors orders, and benfotiamine (my decision) for my neuropathy. They help me. I couldn’t take lyrica and some of the other drugs they use. Had physical,problems with them.

couldn’t take lyrics either. now i will take your suggestion and try the vitamin route. i already take strong dosage of probiotics for my GI problems, and it has really made a huge difference.

Lyrica works great for neuropathy. Both my wife and I take it and the only issue I have, which is common with Lyrica use, is short term memory. I asked the doc’s office if stopping Lyrica (not something I can do) would bring my memory back to normal and they said “no”. I’ve no idea if that’s true, but I need to take the Lyrica to avoid the very unpleasant effects of PN.

I use gabapentin (prescription) and think a great deal of it. I see a neurologist for teh script.

Rick Phillips

I don’t do well on gabapentin. Zonks me out. My mom just got it because insurance didn’t want to give her Lyrica. She zonked out too. Now she has Lyrica and is doing better on it. it’s expensive but it works well.

I have neuropathy in my hands. It’s horrible, debilitating pain. It’s numbness and fire at the same time. There have been times when I’ve woken up in the middle of night with pain so bad I was crying and wanting to cut my hands off. There have been mornings when I’ve woken up and not been able to open my bedroom door because my hands were so funky. I’ve been taking gabapentin for about a month now and it does wonders with the pain. The weakness I still have and have had to give up a hobby or two (target shooting doesn’t seem safe anymore if I feel like I could drop the gun). Unfortunately, though, I have to grin and bear it with a smile on my face because, you know, “T1D isn’t that bad”, and “Oh, but you’re not really sick”. I’m young and healthy looking so I suffer in silence because people don’t believe that I can deal with such a horrible pain and go on living a normal life and working full time. Everyday I live with the fear of getting an infection and losing a finger because I just can’t seem to stop biting my nails and the skin around them. Wow, I’ve been ranting. Sorry…

…Yes, I experience it.

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I feel you! I also have had it in my hands (some in my feet but nowhere near the hell of having it in my hands). As mentioned above, taking a B12-B6 complex helped get rid of the really bad spasms at night, but now I drop things all the time. I also feel like I can’t say anything…

I have polyneuropathies. That is, different types of neuropathies. I have been taking gabapentin for approx. 10 yrs to keep the pain at bay. I also use tramadol and hydromorph when the pain gets intense. With that said, I’ve had to increase the dosages of gaba because I hit a threshold and it stops working. I have problems with memory and cognitive abilities. I asked my doc about Lyrica and he mentioned that, in the beginning, they had high hopes for the drug, but that it did not work as expected. The problem is, unless you are willing to deal with on-going, intense pain, you need to use the neurontin. Because I also have fibromyalgia, the combination of the two problems is unbearable.