Living with Neuropathy - Welcome to the group

@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. I'm Barb, and I posted a comment yesterday, with no answering reply: I have burning and percolating legs on the shins at night, and my legs hurt during the day, especially if I stand more than 5 minutes in one place. Has anyone had these symptoms? Does this ever end?

My neurologist has suggested I can try a different medication if I want to, but warning that every medication has it's side effects. Since I have not had any side effects from the Gabapentin, I have decided to stay on it for now. Some days are better than others, but some days leave me wondering if I should be switching to something else. I don't like taking any more medication than necessary. I do wonder if more exercise like walking, would help or aggravate
the condition?

Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is a great place to ask questions, share your story and learn about others with similar health issues and possible treatments. Neuropathy can be difficult to comprehend sometimes due to number of different types, diagnosis and possible treatments. It's pretty awesome you have found some experienced specialists that are helping you. That is a big step.

Do you have a diagnosis you can share?

Mine is idiopathic small fiber peripheral neuropathy plus a few more issues. I have to share a story about the idiopathic diagnosis. I was at a Minnesota Neuropathy Association that had 3 different speakers. There was a short questions and answers session after each speaker. The first two speakers were asked the same question - how many people around the world are affected by peripheral neuropathy? The first speaker said the number was around 20 million or so. The second speaker said including China about 80 million had some form of neuropathy. The third speaker, an 80+ year old neurologist who still had a small practice and is doing research at the University of Minnesota to develop a inexpensive test to determine if you have peripheral neuropathy, said "in deference to my younger colleagues, idiopathic was named after the idiot neurologist who did the diagnosis. If you live long enough everyone gets neuropathy because the nerves will eventually start dying off". He drew the biggest laugh from the crowd.

Hoping for some answers for you.

John

I have numbness in my left calf and top of left foot and some around the feet. I don't have friends, family and souls to take me around. I am attracted and have many interests and was always independent. The numbness causes me to go off balance and must use a walker and hold onto someone too

I had back surgery and had it before the surgery. Surgeon said it should go away with time as nerve was compressed for a long time.
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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.

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 Barb

I had burning shins snd feet. I was put on Duluxetine 60 mg a date. The later added 300 mg Gabapentin three times a day. Really helped me.

So sorry you have not found relief yet.

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.