Extreme pain in my feet. Neuropathy

Sorry to hear about all this @jim777 . Much of what you describe matches the various pains and sensations I get. Most of mine is fleeting (10 seconds to 2 minutes), but the stabbing, shocks, toe in a vice all are level 10. Aching and RLS an issue and go for hours. Mostly in evening or at night when resting. If constant I couldn't take it. Getting more frequent and places other than feet. It sounds like yours is more constant. I blame my shoes and socks for a lot of weird sensations that are never their fault since the feeling remains even barefoot. I feel like my socks are strangling my feet, but same sensation barefoot. Numbness is constant for decades.

I'm not sure if your burning is the same as that I had for decades, but rarely get now. My son also had it for a long time. We would suddenly get burning, itching, pain in our hands or feet separate from the other sensations. The palms and soles would turn white with purple polkadots. I thought it was Raynaud's at first, but that really doesn't fit. Not triggered by cold. It usually happened when we were up moving around. I discovered if I elevated my hands and feet it stopped in about 5 minutes. Worked for my son too. I had to hold my arms like "touchdown" for my hands. Looked pretty silly in public. If my feet, then lie on my back on the bed and put my heels up on the wall so my legs were at a 90 degree angle. We both have Hereditary Neuropathy with Pressure Palsies (HNPP). Oddly enough, my leg hair disappeared about 20 years ago. As a woman, that's ideal for me although I knew some disorder was causing it. I always assumed that was a vascular issue, but after reading your note maybe it's the neuropathy? Hopefully, you're able to see a neurologist at Mayo or some other top notch facility where they see more odd cases and are willing to pursue it. Your average doctor just doesn't see a lot of odd cases so they are lost if it's not textbook. Only one of my doctors (neurologist) had heard of HNPP and she came from a teaching hospital. Prayers you get some relief soon.

Thanks for the reply. Money talks when it comes to getting good healthcare. My neurologist was a joke. I rarely were shoes, when I do at the most its 2 hours and sneakers.

Has any meds/supplements helped with pain?

I’m allergic to NSAIDs and I don’t metabolize narcotics or most meds well. Just get side effects with no benefit so I haven’t tried anything for this. My short episodes happen about 10-20 times a day. My cancer meds have increased episodes. I worry about if/when they become constant. Have you asked to be referred to a pain management specialist?

.....that is a lot of pain to put up with, do you feet also get red/flushed... i have it on my face its not Rosacea but did start on cheeks and nose off and on and burning like what is said, boiling hot water or a flame, sometimes face red but it can burn or sting without being red and then started down right side of neck and top of chest.... have some p.n. from years ago but wasnt too bad mainly hands and feet, no meds, but this burning night or day up to 5 hours is perplexing... dermatologist said not his field and waiting for neurologist appointment... i didnt want to try cold packs but bought some small round ones just keep in fridge not freezer and although they seem to hurt fact when hold one each side on cheeks, after about five minutes does bring some relief... maybe could try some on feet etc? J.

@lacy2 -- All that burning sounds pretty miserable. I don't really get it in my feet and hands anymore like I did for decades, thankfully. It's rare the issues cease. When you talk about that burning, it reminds me of when I was told to take niacin to help something and that caused that horrible flush reaction for me where I was literally under cold water trying to get relief. It started about 30 minutes after I took it and would last for about 45 min. My skin would turn bright red and hot to the touch like a bad sunburn. Just checking to be sure you're not taking niacin for anything. I hope the neurologist will provide you with some answers and relief.

So sorry for you. I am 72 and dealing with this for maybe 10 years. Neuropathy was caused by diabetes but my numbers were never real bad. As per doctors orders, I'm pretty strict with my diet, not perfect but strict. I am not even heavy. It has basically ruined my life as when it flares up I do not want to be far from home base. I take Gabapentin 2400 per day. Maybe works a little, maybe. "like getting your foot run over by a truck, them having boiling water poured on it" says it all. I've tried stem cell, prp, light therapy, electro-acupuncture, many different pills and lotions. NADA!!!! I hope you find something and pass it on to all of us. Good luck, my friend!!!

...thanks no not taking niacin but i did read about what you are saying,.. appreciate the suggestion; even as am typing it is starting under chin/neck but just came up stairs quickly... I have no idea after 8 months what it is .. and months wait to see specialists and from what I have read, not easy for them to diagnose either and with all my other illnesses it is just a bit too much (my tinnitus has been joined by its cousin hyperacusis, and its aunt - moderate hearing loss - its uncle - eustachian tube pain and its grandmother - musical ear!! It is defeating me tho as the jigsaw puzzle of my health has a piece missing: cure! LIke many others, glad yours is a bit better!

I am 55. I can provide some insight about Peripheral Neuropathy with no harm to discourage you. But, I am a diabetic II since 2017 (after stroke) which was not known beforehand. My PN (feels as walking barefoot on broken glass) started approximately 2018 with my toes then affected my feet. They became tingling and numb but I just ignored it and thought it would just go away in time. I was deadly wrong!

My A1 have been between 9 and 11 for many years. Until this day, I am unable to drop below 9.

Then, early 2019 is when PN start to escalate it moved upwards to calves and thighs then waist. Sadly, I became impotent and barely able to walk and painful nerve shocks started to occur within my entire legs. And I started to lose a lot of weight. I used to weigh 170 and weight shrunk drastically to 109 with severe PN and diabetes.

Initially, I visited emergency rooms, hospitals, clinics, neurologist, etc as PN became so unbearable and extremely painful ! ALL doctors and specialist only provided band-aids to help ease the discomfort such as gabapentin, juniva, insulin, deloxine, etc which was a waste of time and of course, lots of money. The ultimate cure was to amputate toes, feet, and/or legs. THIS IS ABSOLUTELY NOT AN OPTION AS I COULD NOT LIVE WITH IT !!!

I wear special shoes with cushions to help walk as I still do not feel my feet (tingling and numb) and barely my legs plus unfortunately impotent until this day. Now, I am insulin dependent as I check my glucose 3 times a day. I have short and long lasting insulin injections to help drop my glocuso especially when I eat and as far as PN, I ignore the discomfort and pain. And take rubbing reliefs such as Vapor Rub and Icy Hot, etc. and heavily rely on sleeping pills in hope I do not overdose on them….

To say the least, I constantly worry that these medical conditions will eventually get the best of me but continue to pray that I will be ok.

I adopted a German Shepherd which I walk and exercise almost everyday! I know for a fact it won't completely cure PN but somewhat believe its doing some good than before….

Please exercise and eat healthy!

My prayers are with all of you.

And my prayers are with you. The interesting part is that there is no one full proof solution and what is good for one person is not necessarily good for another. Try EVERYTHING, especially if it doesn't hurt financially. My A1C is middle 6 or even low 6 but neuropathy lives on. While I pray for you, I pray for all our close family members that have to live with us and see our suffering. My day ends when my severe pain begins.

I have constant serveteran pain all day and night from my toes through my feet up my calves through my thighs and buttocks.