Icy feet and ankles with Small Fiber Neuropathy....anyone?

Are hands in the same catagory as fet? Sometimes my hans feel as though theirm temp is around 10 degres C

I have the same cold feet people here are talking about. Sometimes they actually are freezing cold but I think they are cold pretty much all the time - like a burning cold. In the winter the rest of my body like the room fairly cold so my feet get so cold I can't get to sleep unless I warm them up with a heating pad that I wrap around my feet. I have to be careful though not to burn my feet!

Offthegrid, I am happy you posted this! I have not found out definitely what is wrong with me and the cold cold feet just started recently. Sorry you have it too, but happy I am not "alone".

Yes, no discrimination against hands. 🙂

Hi @offthegrid I too experience cold and hot with both my hand and feet. My neuropathy is not bilateral only the left side is affected. It is important to find out the cause of the condition, if possible, to help stop the progression. My cause was the surgery to repair my ruptured AVM. So my condition is NOT ongoing for the neuropathy to worsen. Sorry to hear you are experiencing those awful symptoms. Perhaps a circulation problem is hindering the nerves with the proper nutrition for them to keep living. My blood supply was cut off thus killing my nerve cells. The reaction is for the remaining nerves to become excited causing the hot and/or cold feeling. I too have to cover or uncover my leg and arm. Doing exercises improves the circulation and may help with your neuropathy. I feel exercise has helped me but it is a slow process. @johnbishop and others do exercises as well for regenerating nerve cells. Each case is different so be patient in learning how to help yourself. Glad you are asking the questions. We will gladly help in any we can. Wish you the best!

@avmcbellar I too have cold feet have had for a long time. I blame it on SFN from fractures I have in my back as the Dr told me about this in our discussions. I found that I use a TENS unit on my back and this lets the muscles release the nerve pathway . This and the heating pad work for me . Just a suggestion

@lioness I haven’t tried a heating pad and TENS unit. Thank you for the suggestion. I am glad you found a solution. You must have fractures in your spine. Do you also use exercise for nerve cell regeneration? I would imagine you need to be careful and use a low impact cardio workout but some exercises can be performed sitting in a chair to increase your heart rate. Does your doctor offer any advice for additional help to lessen the pain? Since the fractures are causing your neuropathy, preventing fractures will be a more permanent solution rather than using the TENS unit and heating pad to decrease the pain. Will wearing a back brace offer any assistance?

@avmcbellar Thanks for the suggestions. I have done all of them .My first fracture was in 05work fracture then in 19 I was to see a neurosurgeon but the virus hit and I just won't go out and chance it . My PCP has helped me but I found the tens myself and knowing the anatomy of the body I thought it would help and it does. My worst was at night till I started using it in the evening then another thing I found was if I keep my foot raised up ,I have an adjustable bed , best thing I did for myself , anyways this helps also . Didn't have any trouble in adjusting to this way of sleeping . I hope you get relief from your problems.

@lioness i don’t blame you for not wanting to take a chance with the dangers of the virus. Sounds like positioning your body helps. I would research the risk for neuropathy with the surgery. For me, I always try to exhaust other avenues before surgery. Surgery should be my last option. I have known people left to deal with neuropathy as a result of hip replacements, knee replacements, and back surgeries. My neurosurgeon was the cause of my neuropathy after the 3rd and last surgical repair of my ruptured AVM. I never experienced neuropathy pain until that last surgery. Don’t get me wrong. I am grateful for all his efforts but I am the one still struggling with the pain. So be careful and research before making your decision.

@steeldove, thank you for your contribution. Do you have any idea why cold feet were more of an evident symptom than painful or numb feet? I have had this diagnosis for four years and I have never had cold feet. It just sort of crept in and stayed a few days ago.

May you have comfort and ease.
Chris