Living with Neuropathy - Welcome to the group

Hi, for the burning of hands and feet my neurologist has me take an extra gabapentin, so I take 2-600mg pills, sometimes it helps. My ice feet and hands have always been- told Raynaud’s since cold feet turn corpse like or 1- purple the other foot red burning. Rheumatologist gave me viagra for it, don’t I don’t bother.
It is all a draining puzzle that can’t be finished. Feel well.

Welcome @cheesehead10, There are a couple of other discussions you might find helpful to connect with others with CMT:
-- CMT=Charcot Marie Tooth Disease Type 2 Neurological Disorder form of MD:
https://connect.mayoclinic.org/discussion/cmtcharcot-marie-tooth-disease-type-2-neurological-disorder-form-of-md/
-- CMT Type 1A and gabapentin for restless legs: https://connect.mayoclinic.org/discussion/cmt-type-1a-and-gabapentin-for-restless-legs/.

Mayo Clinic also has some information on CMT here that might be helpful: https://www.mayoclinic.org/diseases-conditions/charcot-marie-tooth-disease/diagnosis-treatment/drc-20350522.

Has your doctor recommended any treatments or lifestyle changes that might help with your symptoms?

Hello @asergio714, @djk1211, @simonewillard, @klschauer, @bcomplex31 and @barb0922, Welcome to Connect. I'm glad to see that some of you have already connected with each other and I'm hoping you will be able to find some answers and help in your neuropathy journey.

The Neuropathy Support Group has many discussions that may help you find other members with similar symptoms where you can learn from their experiences.
-- Neuropathy Support Group Discussions: https://connect.mayoclinic.org/group/neuropathy/.

I shared my neuropathy story in another discussion here - https://connect.mayoclinic.org/comment/310341/. If I can offer one suggestion it is to learn as much as you can about your condition and any treatments that are available. Two of my favorite reference sites for neuropathy are:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/.

Hi - I just recently started seeing the blue toes and feet, sometimes red first, more in one foot vs the other. Did your Neurologist consider it just part of our PN? I worry about circulation and just wondering in advance of my next doc appointment. Thanks!

I try to avoid drugs, but Gabapentin has been the only help I got for the extreme hot/cold feet and hands. The cold was intolerably painful, wore gloves even to bed in the hot weather until the Gabapentin dosage got to help level. I still get a little uncomfortable at times, but my life is so much better now. I still avoid nature extremes without protection, and control my water temperature.

Hi I am Ian Dunlop in Perth Australia. I have had a neuropathy for some years now. My main problem is how to exercise with this condition. Walking and jogging are out and I am near useless with an exercise bike.
So what works?
I was extremely fit but now at 81years still good but not up to my expectations. I am a strong believer in keeping fit as you age.

Have idiopathic peripheral Neuropathy for 15 years but lately progressing quickly. Any way to stop itm

Have PN unknown etiology, age 76, not diabetic, no injuries, accidents, diseases, no medications, although have tried gabapentin and Lyra and 10 mg steroid for 6/days. No remarkable change. Did take Pfizer covid vaccine, 2 shots and booster, mRNA carrier. Read yet unconfirmed study done at Stanford Medical Univ, connecting spike protein to attack on nerves to feet.
Condition has increased beginning to effect walking.

Welcome Ian @iandunlop, Jogging is definitely out for me also and I'm at a minimum for walking unless the weather is good and I can use trekking poles to stay upright while walking. I have a couple of indoor exercise machines which I'm able to use without too much of a problem. One is a Teeter FreeStep Recumbent Crosstrainer and the other is a Sunny Health & Fitness Row-N-Ride PRO Squat Assist Trainer. Like you, I think it's important to stay fit but I'm a long ways from being extremely fit at 79 soon to be 80.

You might find the following webinar from the Foundation for Peripheral Neuropathy helpful: Webinar: Physical Exercise and Peripheral Neuropathy: https://www.foundationforpn.org/webinar-physical-exercise-and-peripheral-neuropathy/.

Also, there is another discussion you might find helpful:
-- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/.

Are you taking any medications or supplements to help with your neuropathy?

I've only recently found this site and joined today. Thank you all in advance for the information I'm sure I will be gathering in the coming days and months. A bit about me - I'm 73 yo, a Vietnam era Marine Corps Vet, Type 2 Diabetic. I have peripheral neuropathy in my lower legs and feet that varies by the day. On top of that I have osteoarthritis in the great toe of my right foot that causes many painful days and sleepless nights. I am currently taking 900 mg of Gabapentin daily which does seem to help with the neuropathic symptoms. My diabetes is fairly well controlled with my A1C consistently between 5.9 and 6.3.

Again, thanks for this site and I look forward to getting to know some of you as time passes.

As an aside, if any of you are interested what my name on the site means, just do a quick search for 1967 AC Cobra. It's a crazy dream for me.