Peripheral Neuropathy

In My Humble Opinion
1

I have peripheral neuropathy and I don’t know why. But I might know why, but it just seems too weird and random.

Back in the fall, I noticed that my feet had become very sensitive and all my shoes felt like they were rubbing blisters.

I bought some larger shoes and cushy socks, and I kind of dismissed it as “My feet got bigger. Weird”. Then after about 6 months, in late May/ early June those shoes started giving me trouble as well. Then my feet began to hurt during my yoga classes. Sharp, shooting, throbbing pain, mostly in the toes. Sometimes behind the toes. Sometimes on top of the toes. Sometimes along the outside edge of my feet.

Then I started getting these pains all the time, even when I was at home with my feet propped up. And I got the burning pain whenever I pulled on my shoes. And, once again, my shoes ( the larger ones I had purchased 6 month before) felt like they were rubbing blisters. It was equally severe in both feet.

Then my feet got numb. Not completely numb, they just felt desensitized. And the pain got progressively worse. So I went to the doctor, who sent me to a neurologist. The diagnosis was bilateral idiopathic peripheral neuropathy. Which I had kind of figured out before I went to the doctor. I’m not diabetic and all my bloodwork is completely normal.

I’m kind of concerned about this, especially considering how fast it’s progressed lately and I’m interested in any tips and tricks that might be helpful in managing this condition.

And now, I’m going to circle to when this first started in the fall. In preparation for my doctors appointment, I started reviewing the history of the problem and I realized something. While my feet have always been a little sensitive and prone to falling asleep, this condition did not escalate gradually. It happened when I was on vacation in the Bahamas in October.

I had been swimming in the ocean. The ocean swimming area at the place I was staying was enclosed by float ropes. I had been swimming and I had already gotten a good bit of exercise when my friends joined me in the water. So I rested while they swam. I leaned up against the float ropes and supported myself with a float under each arm. The floats and the rope were heavily covered with seaweed and I was leaning against the ropes for 15-20 minutes.

After I left the water, I had a lot of stinging burning pain on my back and under my arms, which turned into a large rashy burn. Based on the location of the rash, I’m pretty sure it was caused by the seaweed or something in the seaweed. Jellyfish larvae? Toxic algae?

I went into town and got some hydrocortisone cream which I used to treat the rash. It cleared in a few days. And I don’t recall feeling particularly ill, at least nothing that wasn’t consistent with too much sun. But it was later that day that I first noticed the problems with my feet. I was keeping a journal at the time so I know my recollections are correct. I wrote about how strange it was that I had such a serious problem with a pair of shoes I had worn for months ( at home I walk 2-5 miles a day) without incident. I blamed a new pair of socks and I one-starred them on-line, claiming the lining was “like sandpaper”. But it was the same style and brand of socks I have always worn so I now I don’t think it was the socks.

Part of me thinks this is just a huge coincidence but it doesn’t feel that way. But I’m not sure if I’m grasping at straws . And I’m not sure why it escalated in late May/ early June. I did take a course of Cipro at about that time, and I got it from a local clinic in the Caribbean ( more vacation bad luck)?

But this sucks.

2

If you look up the Wikipedia article under causes you see:
“rarely, following the sting of certain jellyfish, such as the sea nettle[medical citation needed]”

Is is possible you were stung by one of these?

3

I could have wrote the same OP sans the whole seaweed thing. Extreme foot sensitivity seemingly out of nowhere at age 47. No matter what shoes I wore it often felt like I was walking barefoot across a rock bed. Actually walking barefoot across a hardwood floor or concrete felt like walking on glass. No diabetes or history of it. Numbness. Cold toes.
So I went to see a podiatrist. I had some lower back pain at the same time and he was convinced the two were related. X-rays showed nothing but an MRI showed I had a bulging disc. They recommended physical therapy which was back focused. My back slowly got better but my feet remained the same.
From there I went to a neurologist. Blood work was fine. Had a nerve study done which involved needles and shocks in the legs and feet.
When all was said and done he diagnosed it as Charcot-Marie-Tooth disease. A genetic disease with no cure. Reading up on it most people just have to “deal with it”, use pain killers when necessary, and a lot of people use Gabapentin. I’m kind of stubborn about medicine so I never got my prescription filled.
So after a year and a half I kind of just “deal with it”. Some days it seems to ‘flare-up’ worse than others. I avoid walking barefoot. I sleep with socks on. It inspired me to lose about 25 pounds since I figured less weight on feet = less pain.
The only solace I found is that while it came on suddenly it’s not supposed to get progressively worse. A friend of my mother was diagnosed with it when she was in her 20s and is now almost 80. It bugs her but she never had to use a cane or anything later in life.

4

It’s possible I came into contact with a bunch of the larvae. I wasn’t really “stung” by anything. That’s why it’s been so hard to figure out if this is relevant. I can find stories of certain jellyfish having poisonous stings. I also read of algae that contain neurotoxins that can be passed to humans by eating contaminated seafood.

But I can’t find anything regarding extended dermal contact with these poisons. I suspect it doesn’t happen that often. If it weren’t for the timing I would think that I’m grasping at straws. And I don’t know why the condition suddenly escalated 3 months ago.

I’m having the nerve study on Monday. Last Wednesday I saw my GP about this for the first time and I saw the neurologist Friday. I called and booked the nerve study for the next available day, which was Sept 13th. Which was fine by me. But then I got a message that they had rescheduled it for August 26 (Monday). Which leads to believe that my doctors are really concerned.

The symptoms that I have now are nothing I can’t deal with, The worst of the stabbing pains are pretty excruciating but not that frequent. And I’m retiring in a few months and I’ll be transitioning to a lifestyle that involves a lot less walking.
Which may not be total coincidence. I made the decision to retire in April, and one of the many factors was that I felt it was getting more difficult for me to do the amount of walking that my urban lifestyle requires. I just didn’t flag it as a medical problem at the time.

But I’m very concerned, mostly because it has been progressing rapidly and I don’t know what the prognosis is in terms of future progression. I’m hoping the nerve study will give me some more information.

5

Hi Ann

Another version of the same story - spent months cursing my socks because they were always getting rucked up and uncomfortable, muttering to myself that I must really get some new ones. Then the stupid realisation that if my feet are like that when I’m barefoot, then it isn’t to do with socks.

In my case, I have never really had pain, just discomfort, sometimes pretty damn annoying. It progressed slowly over several years.

Long story short, after neurology appts and a variety of tests, the only thing left to suspect was allopurinol, which I had been on for several years as part of a treatment for UC. It’s a rare side effect - I had seen it in the package leaflet and dismissed it; neurologist cautioned not to.

I have been off the allopurinol since the new year. Am I improving? It’s very slow and very subjective, but I think probably so. (By this point I am totally convinced it is the allopurinol that’s the cause; neurologist remains open minded. Damn!)

So: my point is, if you are on any long term medications, review them as possible causes. (This is kind of my stock in trade - if you need any help, just ask).

j