Thank you for starting this thread! I have found "my people"
For those who don't "know me" here, I am young- but have had type I diabetes for 24 years. I have maintained excellent control of my blood sugar with 2 brief periods of loss of control (starting college and going through a divorce, that was complete shock of my life).
I have experienced TERRIBLE neuropathy, but not from diabetes. Almost 2 years ago, i was on top of the world. I had just competed in the world's championship of my sport (I didn't even finish the race, but hey, i still went!)....when the next thing i knew just a month later, I collapsed outside my apartment unable to walk.
I had contracted guillain barre syndrome- a neurological disorder where the autoimmune system attacks the mylein sheath of the body's nerves. patients become paralyzed and it typically lasts 6-12 months. 80 percent recover, 20 percent will be paralyzed permanently or die.
I was very lucky to have a "mild case" and went from only able to walk 1 mile in 1/4 mile increments at 5 months out, to completing a 14 mile trail race up and down a mountain at 6 months
As the nerves "wake back up" the numbness became excrutiating burning fire and ice. For the initial serious part, i was prescribed oxies, but soon was able to get by with large doses of gabapentim. it is a great drug for nerve pain, and it is non habit forming and unless you take a TON, it doesn't make you too out of it to function.
Now my nerves have mostly healed, and i oly experience it when my feet get cold or from overuse.
things my Dr has me do:
1. take gabapentim when needed
2. take B1 and B12 to keep it at bay! I take both daily.
3. keep my feet warm! massage them when cold or numb. wear big socks and slippers, if my husband has AC on too high for me.
4. NEVER walk barefoot on sand- Dr worries i could burn my feet, without knowing i am doing it.
5. very, very sadly- i had to stop running. the stress from landing flares it terribly and the numbness makes it dangerous. i do still enjoy long walks, and hiking, and occasional mountain trail racing- i just walk them....
i also enjoy yoga to help with balance issues.
and i enjoy strength training to work on rebuilding the muscle tissue that was wasted from my body.
looking forward to hearing what has helped everyone!