I was diagnosed with PN about 20 years ago. Feet, legs, arms and hands involved. All the neuros that have checked me say it is idiopathic (unknown cause). The checks range from blood, spinal fluid, Lyme...up to DNA testing for Charcot Marie Tooth (CMT). CMT is for hereditary connection. All results for every known disease that was faintly connected was negative hence...the idiopathic designation. Nerve conduction tests revealed progressive dying nerves. Through the years the PN progressed until I am presently in a power wheelchair. I can walk a little but legs weak. As I can’t feel anything from the knees to my feet when I try to walk it is like walking on stilts. My balance is terrible. My beginning symptoms were foot drop caused from deterioration of the tibia muscle along my shins. Only pain I have ever experienced with it was intermittent shooting pain down legs to feet during the first few years. I tried gabapentin (always sleepy) and Lyrica but side effects were worse than the medicine. My main complaint from a pain standpoint is the coldness in my legs. I began having cold feet just after returning from Vietnam in 1970 and the coldness has progressed up to my thighs now. Perhaps I got too much Agent Orange while in Vietnam. Anyway, I have always felt that I was a bit lucky because I haven’t experienced severe pain with the PN. I have to keep my legs very warm to counter the creepy crawlies in my thighs. As a remedy sometimes when it gets to severe i take a very hot bath...hot enough to make my legs very red. This helps before I go to bed at night. About a month ago I started to work out at a fitness center. Full body and leg exercises on the machines and I feel a little stronger. I guess it looks a little strange to see a guy rolling around in a chair from machine to machine, getting off, climbing on the machine, do the exercise then roll to the next machine on my list but so far its working. I wish I had some kind of concrete items that would help your situation but I can say that my coldness can be countered by hot baths. The surprising thing about the coldness it that it is not a natural coldness...it is nerve coldness caused by the nerves dying.... it is on the surface and deep inside to the bone and takes a long time to warm up the effected area. If I can help in anyway...let me know. Salty
MR, first I want to apologize. I just didn’t see your reply, and I wanted to say thank you for such an interesting, and informative description of what you are going through. I am so sorry for what you’re experiencing. Everyone here has been wonderful sharing their experiences and suggestions, and I just wanted to include you. Thank you, and my prayers for your relief.