Extreme pain in my feet. Neuropathy

Posted by jim777 @jim777, Mar 31, 2023

This started in Aug. 2008 at age 43, I put my sneaker on and it felt like the sock was bunched up at the tip of my big toe. Adjusted the sock and it was still there, checked the sneaker and found nothing. I finally went to buy new sneakers and thats when concern set in, it was the same feeling when trying on new sneakers. No pain at this time. a few months went by and felt some discomfort in my toes in both feet, my doc sent me to a foot doc, he said it wasn't my feet but something effecting my feet, maybe my lower spine? The discomfort in my toes/ball of my feet stared becoming painful as time went on. in 2011 I went to see a neurologist, got an MRI and there was some issues but nothing major, also no diabetes. I basically got nowhere. The pain would start in the afternoons and night. When I woke up it would go away, my feet almost felt normal but sometime in the afternoon it would start, pain level was low to midrange. I started putting a large blue gel icepack around my foot at night while in my recliner, switching off each foot. The cold would help. That eventually led to putting my feet in a foot basin with ice and water. The pain gradually got worse. In 2021 it finally moved from only being on my toes/ball of my feet to my arch and top of my foot. Took a chance with the neurologist again but got nowhere. in 2022 I started to get sharp stabbing/electric jolts, not all the time, some days nothing, then one toe would get a shard stab every 5-10 minutes. When this happens its usually the same place, the next time a different to. It seems to now effect my legs from the knee down. Sometimes when in the recliner my calves feel discomfort. I never had a lot of hair on my legs and the hair was a light color, almost white but I notice there is no hair from my knee down. Early this year it moved to my hands. Not nearly as bad as my feet and sometimes they dont bother me. The odd thing is warm water makes them feel better when they hurt where as my feet ice water takes some of the pain away.

A few notes. Does not effect my motor skills and never had pins and needles. Ove the last 8 yrs I've tried Tramadol, then went to Neurontin and now Lyrica. Now of them help with the pain. The only thing that helps is Percocet but cant get a permanent script for that. I actually have a few but dont take them because of the Lyrica(Pregabalin), 200mg 3 times a day. Money is an issue to, no insurance. I also tried the usual like ALA, B1, b12, turmeric etc I spent a lot of money over the yrs, nothing ever worked. The burning part I thought may be Erythromelalgia which it cold still be along with neuropathy. Whats the pain like at times? I tell my wife its like getting your foot run over by a truck, them having boiling water poured on it. Its two pains, a deep nerve pain with a burning pain.

Anyone have a similar experience? I just want pain relief and to fix this issue. Any help would be greatly appreciated.

Interested in more discussions like this? Go to the Neuropathy Support Group.

I had sudden onset of SEVERE foot pain - as if someone had driven a railroad spike theought the middle of it . Sometimes an second one was added, and sometimes the first one was just messed with.
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Eight hours at an ER to get an xray that said 'arthritis'.
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I just ended EIGHT MONTHS and FORTY-ONE SESSIONS of PT for sciatica to get waking, And then I could not put ANY pressure on the foor. I was sent home with a script for Motrin, and got a script from my podiatrist for,,,,MORE PT!!!!
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They are mixed happy about having me back.
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Might inquire if that would be of benefit. I feel MY PT has helped a lot more tha just my foot. I told them they ought rename from Endurance ReHABilitation to Re-HOPE-bilitaion.
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(=^..^=)

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@californiazebra

@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.

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Thats simply amazing your issue ceased after decades

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@julkun

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!!!

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We all feel alone but this board shows there are many of us who suffer in silence.

Amazing we have to deal with this insane pain, no fix or relief.. 600mg of Pregabalin(Lyrica) 200mg 3 times a day seems to be doing nothing.

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@pamelaz

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

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How did it start, in your toes? how long was the progression moving into your whole foot, calves etc, can we get more details? meds you take etc?

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@jim777

Thats simply amazing your issue ceased after decades

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@jim777 -- Yes, it is amazing that one weird issue stopped happening. I wish I could say the say the same for all my other neuropathy issues I have including stabbing pains in my feet and other places.

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Oh yes!!!!! The burning, numbness, stabbing sharp pain…….feels like my feet are in a fire pit of hot coals. I just tried Lyrica. I hope it works for you. After 4 long years, I have finally been diagnosed with Axonal Sensorimotor Polyneuropathy and Small Fiber Neuropathy. The pain is extremely severe in my feet, ankles and some of my calf muscles. Also, in my hands and wrists. I feel alone; others can’t see what is wrong!!!!

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@annregister

Oh yes!!!!! The burning, numbness, stabbing sharp pain…….feels like my feet are in a fire pit of hot coals. I just tried Lyrica. I hope it works for you. After 4 long years, I have finally been diagnosed with Axonal Sensorimotor Polyneuropathy and Small Fiber Neuropathy. The pain is extremely severe in my feet, ankles and some of my calf muscles. Also, in my hands and wrists. I feel alone; others can’t see what is wrong!!!!

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Hi @annregister -- Sorry to hear about your pain issues. Did the Lyrica help at all?

I have a lot of disorders people can't see including neuropathy. I completely empathize with your frustration of appearing normal to others while battling so many issues. If you have a cast on, people can understand that. Invisible disorders are another story. A perfect example is my neuropathy (HNPP) has made eating a challenge. I have trouble controlling many foods in my mouth and aspirate as a result when the food slips down my throat before intended. That became constant 8 years ago. It's both a medical and social problem. Then 6 years ago, I lost my ability to taste and smell after taking very strong antibiotics for diverticulitis. So I can just tell someone about these two problems and their next sentence is, "Oh maybe, you can eat x, this is how I make it and then they start telling me the recipe and how great it tastes." Did I not just say I can't taste anything? Seeing is believing as they say.

Yes, invisible disorders can feel lonely. My son who inherited my HNPP once said to me, "I'm not glad you have HNPP, but because you have it, I'm so glad there is someone else who understands what it's like. No one ever believes all the crazy things that happen due to this. He had to have nerve transposition surgery in both arms. He has weird stuff from it too.

I hope you can find something to take the pain away.

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@jim777

How did it start, in your toes? how long was the progression moving into your whole foot, calves etc, can we get more details? meds you take etc?

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I tried Cymbalta, Gabapentin, Lyrica and nothing helps. It started in my feet and moved up.

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@californiazebra

Hi @annregister -- Sorry to hear about your pain issues. Did the Lyrica help at all?

I have a lot of disorders people can't see including neuropathy. I completely empathize with your frustration of appearing normal to others while battling so many issues. If you have a cast on, people can understand that. Invisible disorders are another story. A perfect example is my neuropathy (HNPP) has made eating a challenge. I have trouble controlling many foods in my mouth and aspirate as a result when the food slips down my throat before intended. That became constant 8 years ago. It's both a medical and social problem. Then 6 years ago, I lost my ability to taste and smell after taking very strong antibiotics for diverticulitis. So I can just tell someone about these two problems and their next sentence is, "Oh maybe, you can eat x, this is how I make it and then they start telling me the recipe and how great it tastes." Did I not just say I can't taste anything? Seeing is believing as they say.

Yes, invisible disorders can feel lonely. My son who inherited my HNPP once said to me, "I'm not glad you have HNPP, but because you have it, I'm so glad there is someone else who understands what it's like. No one ever believes all the crazy things that happen due to this. He had to have nerve transposition surgery in both arms. He has weird stuff from it too.

I hope you can find something to take the pain away.

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Lyrica dulled the pain some, but the dark thoughts took over my life. It wasn’t worth it to me.

I’m so sorry your son inherited this disease.

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@jim777

How did it start, in your toes? how long was the progression moving into your whole foot, calves etc, can we get more details? meds you take etc?

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The progression was fast. They try to say it stress and anxiety. Wrong. I can hardly walk. The medicine for depression and anxiety takes my breath away

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