Living with Neuropathy - Welcome to the group

Hi Chris, I am not a pill pusher either, so I do not take any medication for my neuropathy, although I have been prescribed several along my journey. I started having problems in 2011, when one day my legs and feet blew up like balloons. I think I should look into cannabis too, does it help for you ? I would be interested as to what brand you use and what doses. If that would be something you would care to share in a post. I’m trying different exercise to combat my balance issues. My feet are numb pretty much all of the time at this point, so if you have this issue could you tell me what you do.
This condition is very frustrating and I hate it, so any help or tricks would be very useful to me. I may not beat this, BUT I’m not giving up !!
Thank you for responding.........

I had chemotherapy for breast cancer 30+ years ago, and was later diagnosed with PN. Is that the cause of the severe lower extremity cramping? I take meds for RLS, but nothing for the PN. I’m also beginning to get hand cramping; its all very frustrating.

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.