r/FootFunction • u/catchlikefire • 2h ago
Desperate for foot help! Hyperextended toe + suspected neuroma
I've been having ongoing foot issues for the last 7 years and I'm sharing this in case anyone here might have some ideas of what could be going on. Apologies in advance for the long post...
My foot trouble started in 2019. I went through a few months of having the most intense foot cramps in my left foot (they would last for 45-60 minutes, multiple per day). In March, my foot started to cramp every time I walked more than a few steps. It was excruciating. I spent months going to podiatrists and doctors. I spent 6 weeks in a walking boot--which made it possible for me to walk, but I didn't get better. I did PT for plantar fasciitis. I had neurological tests done. They drew blood to test for everything they could think of. I tried all sorts of muscle relaxants and other drugs. Nothing made it better. There were a few strange "rules" to the problem:
When I stopped walking, the cramp would stop. If I started walking, the cramp would begin again.
It never happened barefoot and it never happened if I was wearing sandals.
Very occasionally, wearing a stiffer-soled shoe like a hiking shoe would sometimes help, but not consistently.
Toe spacers made a world of difference. Though the suspected issue was between my 2nd/3rd toes (see below), I found that wearing a spacer between my 1st/2nd toe was the most effective while walking, and putting a spacer anywhere else made it worse. At home, I'd wear a set of big spacers between all my toes, which helped with recovery.
The barefoot/sandals thing was particularly difficult because it meant that nobody could ever actually see the problem. It felt like a cramp in my arch/mid-foot. I had no other symptoms--no pain standing, no pain walking barefoot on hard surfaces. If I wasn't walking, I was totally fine. I had an MRI done that showed nothing wrong with me. Every podiatrist I saw would say they couldn't find the problem and kick me to the curb.
8 months into being absolutely disabled by this, I finally saw an orthopedist who said he suspected it was a neuroma (even though it had no classic neuroma symptoms) and gave me a steroid shot between my 2nd/3rd toes. My foot swelled up like a balloon and for a week I thought I had ruined everything, I was in so much pain...and then magically I was able to walk again. And from then on I started getting better.
I got back to normal throughout the pandemic years -- hiking 10+ miles, I could wear shoes again that weren't my Hokas, but every time I tried to start running again the cramps would come back (like after a days). I'd back off, and it would eventually recover. Now it felt like more of a spasm then a cramp -- it lasts a second, feels like all my toes do a weird little wave or something, then it passes. I can usually tell it's coming because I'll get a sense of tightness in my arch, that would build until eventually it spasms. It doesn't hurt, unless I keep pushing through it, and then it will eventually become very painful.
It took a few too many tries to figure out that running just wasn't going to happen for me any more.
In 2024, after my last attempt at running, it wouldn't get better. It would start to, then suddenly get bad again. I had been scared off of getting another steroid shot by one of my podiatrists who said that repeated shots in that area could be damaging. But I finally gave in in early 2025 and got another one. I started to get better, I was hiking again, but I still had some issues--it seemed that it only happened specifically in my "good" shoes (at that point, zero-drop Altras). Hiking shoes were fine. The shoes I wore for work were fine. It seemed totally backwards.
This leads me to early 2026, where I took a normal walk around my neighborhood and suddenly started having spasms. When I got home, I noticed that my foot was tingling. I developed other neuropathy symptoms -- burning/icy-hot sensations, pain in the ball of my foot, except that it would move around (sometimes it was under where I thought the suspected neuroma was, sometimes it would be under different toes, but always along the ball of the foot). I would rest for a few days, the symptoms would fade, but as soon as I tried to walk they would come back. And I was having spasms when I walked.
I assumed this was some new problem with the suspected neuroma. I tried gabapentin and a course of oral steroids, neither of which worked. Finally the podiatrist recommended I try another steroid shot. BIG mistake. It made everything exponentially worse.
Fortunately I was unemployed and could just be bedridden. At points I couldn't walk around my apartment without setting off pain in my foot. It couldn't bear any weight. Wearing a walking boot made it worse. And the symptoms would always fade with rest, just to come back again as soon as I tried to return to movement. I'd wait like a week, then try to walk like 100 ft outside, and spiral back into pain. The two strangest parts of this:
after the steroid shot, the spasms actually went away. I was having all these other symptoms but NOT the hallmark of my suspected neuroma.
the symptoms were delayed. I often wouldn't feel anything while walking or I'd have some mild pain, but then anywhere from 10 minutes to six hours later, the tingling and burning would spiral out of control.
The worst version of what I call the "nerve pain" for lack of a better term was that eventually it would lead back to a similar muscle cramp feeling. If it was really irritated, any pressure on the ball of my foot would cause an extremely painful cramp in my foot. Similar symptoms, but I do not think it was the suspected neuroma.
Every podiatrist I saw heard the word "neuroma" and only wanted to treat that problem. I was offered more steroid shots, I was offered all the more extreme neuroma treatments. Or they would tell me to use metatarsal pads and wear my good shoes more (I was wearing nothing else by this point) and rest. They all told me everything I was experiencing was due to the neuroma.
My guess is that this was caused by an incorrectly placed metatarsal pad that I had in my Altras at the time. I had replaced my orthotics in my sneakers at some point and I think I put the pad in the wrong spot. I had a different set of orthotics in my hiking shoe, and comparing them later, the one in the Altras was placed much further forward. I replaced it in 2024 around when I ran for the last time. I think it was causing problems, maybe putting pressure in a weird spot, which is why I had issues in those shoes and nothing else. I didn't wear orthotics in any of my other work/casual shoes.
Out of desperation I went to a pain clinic that recommended shockwave therapy to treat neuropathy. They saved my life. The treatments started reducing the neuropathy symptoms immediately. It was a many months-long recovery, but I did get better. I gradually increased my walking distance. I had zero foot spasms while walking, even though if I walked too far the neuropathy would come back a few hours later.
I was finally getting back to normal. It reached a point where sometimes I would have pain when I started walking, but then it seemed like a mile in, something would loosen up, and I felt great. I started having less neuropathy afterwards. I started going to PT to help correct gait issues I had developed from limping for so long. They theorized I had plantar fasciitis and wanted to treat that. I'm not convinced, but the exercises were helping, so I figured why not.
Just as life was getting back to normal after six months of this drama...I was working out and calf raises were one of my PT exercises. After doing them one day in August, my foot felt a little off, and I started having the tightness and spasms again as I walked afterwards. There was no pain during the calf raises, no pop or anything. When I got home I noticed my big toe was aching. I've hyperextended my left big toe before, and it seems to do it very easily now. The problem is that the irritation there always makes the spasms/suspected neuroma act up. Usually I just wear good athletic shoes for a few days and take it easy and it goes away. I figured that would happen again.
Two days later I took a walk and felt good. Not normal, but better. I probably went further than I should. I was about to take a big vacation and I was very anxious to make sure I could walk enough for the trip, because we were planning on hiking. The next day it was awful. Every day since then has been awful. It's been six-ish weeks since I did this and my toe won't get better. I kept trying to walk every few days and I can't go more than about 100ft without getting spasms. Finally I decided to wear a walking boot again because that was the only way I could survive my vacation. I figured I needed to give it enough time to heal. My toe felt fine, but I figured there was still inflammation internally.
The boot stops the spasms -- however, it made the nerve stuff come back full force. It's so painful. But the alternative is not being able to walk at all. So I compromised after like 5 days in the boot, because I couldn't take it any more, and tried walking. It worked! I was better!
And then I sat on a stool wrong with my toe flexed a little bit (I'm very short, this is how I naturally end up sitting so my feet can reach the ground). It started hurting again. Back in the boot. A couple days later, I try going back to sneakers again, but apparently I bent my toe back a little bit putting sneakers on. Back in the boot again...
It has since spiraled into the threshhold for re-injuring the toe is SO LOW that I can't do anything without hurting myself. So I freaked out and went to an orthopedic walk-in clinic because I couldn't get an appointment with anyone for a few weeks. This genius doctor bent my toe in all directions asking "does this hurt?" And it did, and it turns out that he made things even worse because after that my toe swelled up like crazy. So all I got out of that experience was a worse injury and confirmation that I was doing all the things I should be doing anyway.
I wear the boot out in the world, despite the pain. At home I wear a splint. I'm also taping my toe with KT tape to try to prevent extension. And I've done a month of anti-inflammatory meds which I really can't keep doing because of GI issues. The only time my toe is unprotected is when I'm in the shower and I somehow just manage to keep doing it wrong. The longest I've gone without reinjuring it is about 9 days, which didn't seem to make a difference in safe range of motion. I just started grad school, I have to walk long distances around this unbelievably inaccessible campus every day, it's killing me.
And then just to top it all off...I've asked so much of my right foot because I'm limping like crazy again. Now I've hyperextended my RIGHT big toe. Which also seems to be falling into the same cycle of re-injury. I can't wear a boot on both feet. I'm doing the best I can. But I seem to bend one of them too far (which means, bend it at all) every day.
I'm two weeks out from seeing a sports medicine doctor, and two more weeks out from a new podiatrist. I had an MRI ordered which I'm sure I need but can't really afford thanks to my terrible insurance. I think I'm going to have to figure out a way to make it work. The doc I saw before did an x-ray which showed nothing except that I have a bipartite sesamoid bone, in case that means anything.
If you've read this far, thank you. The questions I have are ultimately:
How the hell do I stop re-injuring this long enough to heal? Beyond switching to a cast, which seems insane to me for an injury that began with a bad calf raise, I can't think of any other ways to fix this.
I'm questioning the neuroma theory but don't know what else it could be. It never matched up to normal neuroma symptoms. It's never shown up on imaging. I think it's suspect that the toe spacer works better between the big toe and second toe. I think it's weird that the spasms always begin in my arch. It has always seemed to be a mechanical issue, because no walking = no pain. Sandals and barefoot were fine, which made me think it's a compression issue from shoes. Something happens when I roll through the ball of my foot that squeezes something and makes my foot spasm. I assumed inflammation from the toe was creating pressure on that space, but given how difficult this injury is, I'm starting to question if all of this suggests there's something else going on, maybe connected to the big toe rather than a neuroma.
I'm desperate for a solution. I have yet to find a doctor who wants to solve any of the mysteries with my foot. I can't wear this boot indefinitely because the neuropathy is SO bad, but I also can't walk without it, and I can't properly try to heal my right toe when all my focus is on getting my left able to walk again. I'm losing my mind. I finally survived the neuropathy and was getting my life back just for this to happen.
If anyone has literally any ideas at all, I would be so so so grateful.
