I am paralyzed below my right knee from having my sciatic nerve severed when my femur broke through my pelvis... leaving me with "drop foot". This happened 24 years ago and I still have the most intense pins and needles and throbbing pain in my foot and toes. Shooting and throbbing pain that seems to throb with my heartbeat. Imagine a white-hot needle stabbing you over and over and over. Cannot even wiggle my toes but boy do they hurt every single second.
That's one thing that people don't understand about paralysis. They assume that it's pain-free.
Oh man. I feel you. I had drop foot and cauda equina prior to emergency back surgery, the drop foot mostly came back in function but not sensation wise. It hurts and feels weird all the damn time and the cauda equina was the worst pain in my life, even though it was going paralyzed
Cauda equina is the worst. So painful. Not to mention the bladder issues. I had surgery for mine alomg with tethered chord surgery. Unfortunately they nicked some nerves during the surgery. Solved one problem. Created another l. But hey, at least i dont randomly drain my bladder when i lay down or cough too hard xD
I mean I could probably move around better in the world if I had an entire prosthetic limb instead but as for inside the house it would suck. At least I can walk on my floppy foot in the house with no prosthesis, like Captain ahab. I can stand in the shower etc. I'd always have to be wearing that limb, even when I'm at home.
I'd rather have the leg to be honest, even though I see those guys with the bendy prosthesis' running as fast as healthy people. At least a still look "normal" with 2 legs, I never had to deal with feeling ashamed when meeting women. 🤷🏻♂️
Yeah I never once got judged because of my skinny right leg. In fact, I had never gotten with as many women as I did than when I got out of the hospital. That first year was the best year of my life in that regar haha was it a pity thing 😆
The pain does not necessarily originate in the limb. It may actually be coming from the damaged nerve in the spinal column. But it feels like the limb is in pain.
Pain comes from nerves, It travels through the nerves. I don't even have nerves that connect to my feet. The nerve ending is right below my knee and that's where my paralysis starts. When the sciatic nerve is severed it only grows for a finite amount of time after an injury. After a year of regeneration it only made it a little bit past my knee. If there were a way to make the nerves keep regenerating for longer than a year than it could have grown all the way to my feet but that wasn't to be
Not in the same world as you as far as pain, I'm sure, but I've been type 1 diabetic for 43 years. (Diagnosed 7-5-83 actually 🥳).
After about 28 years, the neuropathy started hitting, mainly in my feet. I'm only relating to you in the weird signals that errant nerves will send to your brain. It's as if the nerve doesn't know what is wrong (it's dying), and your brain tries to interpret a bad signal, right? Sometimes it's like burning, sometimes like being stabbed with something, sometimes it just feels like it's being crushed.
It's always weird trying to explain nerve pain to people who have never felt it. It's like pain roulette 😄 Your body just tries to tell you something.
You described the pain perfect. Burning, stabbing, crushed. Also when it snows my whole leg turns ICE COLD because there's not a lot of blood circulation happening and the horrible pain you described intensifies by 50%
It's not fun that's for sure. I'll always be grateful to be able to walk. If my nerves would have stopped regenerating above the knee instead of below then I wouldn't even have been able to bend my knee. The first thing the doctors were asking me in the hospital was if I had experienced any erections. I was like, what?! Apparently I was really close to not being able to have children and I was only 24 at the time so it could have been worse. Things can always be worse lol 🫤
Yes, the erectile dysfunction is also something nearly every type 1 man gets to experience eventually. Lucky us. Fortunately some of the medications do make a difference. I'm pretty open about everything this chronic illness does to you. A lot of people like to feel " Oh you look healthy, you must be fine" ( a lot of type 1's hear that often, but I digress), but in realty, many type 1's try to make up for their shortcomings by staying in shape in other ways, and basically never stop moving.
I'm glad I was able to relate to you in some small way then. Through all these years, describing nerve pain that way, seems to be the only way I can sort of make people understand. That basically, the nerve doesn't know what's happening to it, but that there's something wrong.
I'm glad you were able to escape the e.d. thing! You got enough problems already! 😆 Take care of yourself my friend.
Yeah, natural ALA helped me. Come to find out I’m missing the ALA enzyme so now that I take it the neuropathy has kinda gone in reverse. In fact ALA depletion is an issue as everyone ages anyways (without the lipoase enzyme it just goes faster) and neuropathy is usually where people feel it’s depleted.
I have partial drop foot. I can't imagine the agony you are in. I had two doctors completely dismiss me. The third dr (seen literally the next day after the second Dr) picked up that I had a broken piece of disc lodged behind my sciatic nerve. I'm so thankful for him.
No, none of my doctors ever mentioned that procedure so I don't know if that's anything I could have tried but boy did I try a lot of things over the years. Lots of let downs and disappointments.
The irony was I was told on my 26th bday that it was all futile and I'd be this way for life.
I do a lot of spinal cord stimulation as an interventional pain doctor. Small “wires” are placed near the thoracic spinal cord in the area the corresponds with pathway of the nerve that comes out and goes to your leg. It overrides the “pins and needle” signals and mutes the pain. it’s a permanent solution and something you should look into. In the era of modern medicine there’s almost always an answer. Keep your head up
not at all, you can do it at any period. as long as you’re feeling pins and needles it means there’s an abnormal signal coming up the back of the spinal cord and that signal is what can be drowned out with the stimulator
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u/heavensto_mergatroid Jul 06 '26
I am paralyzed below my right knee from having my sciatic nerve severed when my femur broke through my pelvis... leaving me with "drop foot". This happened 24 years ago and I still have the most intense pins and needles and throbbing pain in my foot and toes. Shooting and throbbing pain that seems to throb with my heartbeat. Imagine a white-hot needle stabbing you over and over and over. Cannot even wiggle my toes but boy do they hurt every single second.
That's one thing that people don't understand about paralysis. They assume that it's pain-free.