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?

@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!!!

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.

I too have type 2 diabetes with an A1C of mid sixes by doctor seems pleased with that but he doesn't realize that I have high levels at night and occasionally in the morning but because because of whatever reason my A1C stays at Mid 6s my endocrinologist wants me to test four times a day after meals and in the morning but Medicare won't give me the strip so I'm going to buy the inexpensive strips at CVS I have been using them to check at night to try to keep from going over I'll be starving to death and then when I check I'm I will be on 180 to 200 on my glucose meter and I'll go grab a bottle of water I try to eat blueberries mixed berries I eat a lot of avocados all these things help because I do have a little a little high cholesterol and in my HDL my LDL have been improving I do make spinach and banana smoothies and try to offset the sugar Cravings that overcome me especially in the morning when I have my coffee I need to stop that I promise the Lord I would and the caffeine I've read is not good for the nerves and your body that aggravates the neuropathy pain also also salt and sugar one person at the American diabetic Association told me that caffeine was not good for a diabetic that had neuropathy another person told me when I called back later on to get further clarification that they didn't have any information on it my doctors told me it's okay to have a cup of coffee so I get different answers from different people even my endocrinologist God bless you and I pray that you have great success I'm praying to go to Loma Linda's neuropathy Clinic and they claim that they have success and rejuvenating nerves and it's not really that expensive although Medicare won't cover it yet because it's a new Cutting Edge technology

Hi @julkun -- I see you mentioned having to test with strips four times a day. I really don't like pricking my finger when I have neuropathy. It's like slamming my finger in a door and my finger is not always a giver. Have you tried one of the sensors you put on the back for your arm? Painless. I use FreeStyle Libre 14 (lasts 14 days). I didn't like FreeStyle Libre 2 because of alarms waking me up and interrupting all the time. It's not covered by my insurance, but with the GoodRx discount I pay $75 for a month. It doesn't hurt at all to put it on. I can now check my blood sugar as often as I want and it keeps a graph recording for the past 8 hours if you haven't scanned with your phone recently. Even if you only try for one month, it really helps you determine how each food affects your blood sugar. You do have to download an app on your phone. You need an iPhone 7 or new model. Not sure about other brands. Maybe your doctor has a free sample to give you? Good luck!