SFN in feet

@jchet, I have lymphedema in my legs and now wear compression socks during the day. Before being diagnosed my feet sometimes felt warm. I'm guessing it could be from the inflammation and swelling that causes the warm feet and not the small fiber neuropathy. I have idiopathic small fiber neuropathy with just numbness and I struggle to keep my feet warm now. There are several conditions that may be causing the swelling.

-- Swollen Ankles and Feet: https://www.webmd.com/a-to-z-guides/swollen-ankles-and-feet

Have you discussed the swelling with your doctor?

My dermatologist gave me the best advice - to elevate my feet above my heart for 30 to 45 minutes twice a day. No more swelling in my feet, ankles and lower legs; and no more water pills.

I don’t want to scare you but my feet and about a foot above my legs was swollen. Then it just went away and about 4 months later my neuropathy started ? I have no idea if they are related so just take this as something that happened to me.

Yes. I have this all over my body at times. I get intense burning. I actually find relief walking barefoot on cool tiles in my house. I live in NY as well, and it gets cold.

I first noticed SFN about 2017. It has progressively gotten worse. It hurts for me to walk or stand. I find Kuru shoes to help with the pain. I have tried several drugs and none really work. I am sure in the future I will have to start a life of opioides to control the pain. There is no cure and it is progressive. It is what it is. I have never had any swelling. My feet are actually physically fine. The nerves are just sending the wrong signals. I was officially diagnosed in 2018. They did lots of tests and have no idea what the underlying cause is. Unless there is some stemcell treatment this is just the life I have.

Hello @repstein713, Welcome to Connect. My small fiber neuropathy is also idiopathic but I only have numbness and no pain. They think mine is probably hereditary. I posted my story in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.

I also have difficulty walking and standing for very long but it's more back pain that anything else. You are right about no cure and it is what it is but I wouldn't give up on your search for something that helps provide some relief. Each of us are a little different and there are a lot of different complementary or alternative treatments and therapies that might help. So it's good to do your own research. Here are a couple of sites that I think might be helpful.

--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.

It's really good to hear that your feet are OK. Have you had to make any lifestyle changes due to your SFN diagnosis?

John - must have missed your prior post. I share your experiences, with me, lower leg swelling south of the knees. My old army friend was an RN for 25 years told me to begin drinking roughly 50 oz of water a day which I did starting 3 weeks ago and reduce salt intake. Big help, just thought I'd pass it on. In 36 hours, I noticed difference and first thing each morning, I drink 12 oz of water and sip throughout the day.

Same here... I try to drink 64 oz of water a day but don't always make it. A few weeks ago a friend recommended these small packets of lemon crystals that just add flavor and no sugar. I've bought both the lemon and lime, and now think I might try the orange.
https://www.amazon.com/gp/product/B003YP3MUS/

I find raising your legs above your heart also helps. I have an adjustable mattress which makes this easy to do.

lecowing - I have done the same with good results after 30 minutes. At times, watching TV at night, I'll get the feet up which helps. I am not sure but I'm thinking there has to be a connection between PN and swelling of legs because my swelling is exactly where I have PN... below he knee. ED