Living with Neuropathy - Welcome to the group

My neuropathy started with my feet feeling as tho they were in shoes or had cardboard on the soles. It has progressed to the point where the big toe on left toe is excruciating and numbness is up to knee in that leg.

It seems that a lot of you are taking gabapentin. Have you been to a pain management clinic?. I take lyrica which is pregabalin. Dr. Said he starts new patients on 900 mg a day. This proved too much for me. I take 200 mg during the day and 300 ng. At night. I am a 76 yr. Old woman who weighs about 180. This dose keeps the night pins and needles out of my feet ankles and calves. I know a lot of people have tried lyrica and didn't like the side effects but I kind of knew that they would be my last hope after not getting any help on gabapentin. I think my advice is to give lyrica a try and see if you can tolerate. I can function fine play a mean game if scrabble and do some household chores so perhaps my expectations were low to begin with but I think there again everyone is different in what they consider functioning. Good luck and I continue to follow posts to hear what gas and hasn't worked. I don't know are any research dollars going into this problem?

I take 2400 mg of gabapentin daily and get some relief. Without that high dose, my pain is unbearable, but what else can I do?

Thanks, I'm going to ask my doc to up the dose

I am 68 female, with a hereditary peripheral neuropathy (CMT) which was diagnosed at around 50 years of age. My father has it, and is still alive at 93, but has very poor balance and can barely walk with a walker and ankle braces. He was in a wheelchair because his legs became too weak to walk, but PT helped him recover. My brother is 2 years older than me and has worse symptoms than me, needs ankle braces and a cane. My brother and I were avid alpine skiers and athletes, but that type of athleticism is gone because of leg weakness and loss of proprioception. I am doing what I can to keep what muscle strength I have. I saw something about LLLT and thought I would ask.

Welcome @cmtperson, It's good to hear that you are doing what you can to keep your muscle strength. It definitely helps. There are quite a few discussions on CMT that you might find helpful. Here is a list - https://connect.mayoclinic.org/search/discussions/?search=CMT. Also, there is a discussion on Low Level Laser Therapy (LLLT) that you might find helpful:
-- Anyone try LLLT red light therapy for helping with PN?
https://connect.mayoclinic.org/discussion/anyone-try-lllt-red-light-therapy-for-helping-with-pn/
Have you seen the Foundation for Peripheral Neuropathy website? - https://www.foundationforpn.org/living-well/

Hi, My name is Mat and I am 70 years old. My experience with PN started in a roundabout way. Some years ago, I was taking a small daily dose of antibiotics for a low grade bladder infection and I developed a prickling sensation all over. I attributed the prickling to a rare side effect of the antibiotic. I stopped the antibiotic and the prickling slowly went away.
I was referred to a neurologist. The neurologist didn't have any good answer for the prickling. He ordered brain MRI's which were normal for my age. I mentioned to him I had had a slightly painful spot on my right foot between my big toe and toe, which had turned to numbness and spread to the undersides of my toes on both feet. In addition, I was experiencing some burning in my feet. He told me it was idiopathic polyneuropathy.
Eventually the burning got worse and seemed to follow a daily pattern like Restless Leg Syndrome; painfree in the morning and increasing in intensity until late in the night. The pain was alleviated by moving my feet similar to restless leg. The Dr prescribed Gabapentin, which was effective. Over the years since, I have had to increase the dose.
Since then, the sensation of having toes (proprioception) has gone away and the numbness is continuing to spread. The burning is also getting worse but the Gabapentin does help.
In my office visits, the Dr checks where my sensation of vibration ends on both my hands and feet. He also checks where the sensation of coolness ends.
From this I surmise I have both large and small fiber neuropathy. I have also noticed bouts of feeling hot and needing to shed clothes or bed covers, so I suspect autonomic nerve system involvement too.
I do not seem to have balance or strength issues. I can walk, run, or hike mountain trails with no issues, other than not being able to sense the terrain under my feet as well as I used to.
I have fears of having increasing pain as I get older and losing all sensation in my feet and eventually my hands.
I hope to see how others are doing and what I can expect.
My Dr keeps telling me everyone is different, therefore He can't tell me how fast things will change or what kind of impairment or discomfort I can expect.

Has anyone tried the Nooro Grouding mat for their neuropathy? Please comment. Thank you.

Hi Mat @matk, Welcome to Connect. Well, I can tell you that you are not alone. All of us with neuropathy have asked ourselves at one time how fast will things change, what can I expect and like your doctor says each of us are different and there's no one answer that works for everyone. What I can suggest is to keep moving and learning as much as you can about the condition and what treatments are available. A good place to learn more is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/.

I've been dealing with neuropathy since my late 40s and will be 82 next month. I shared my story in another discussion along with other members here - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

Have you looked into any alternative or complementary therapies?

Haven't heard of the Nooro grounding mat but there are a few discussions and quite a few comments from members who mentioned grounding mats if you want to scan through them - https://connect.mayoclinic.org/search/?search=grounding+mat.