It has been a couple years since I was hit by PN. I am posting now because this site helped me very much when this happened to me. Information is power. And when you are hit with something like this--as many of the other postings also point out--many doctors do not have any answers for you! It is scary and frustrating and all of that....!!! So I decided to post now to add to the information that is online--the same wealth of information that helped me when I needed it so badly a couple of years ago...!

It was September 2, 2013 when I was struck with PN. I am HIV positive and have been on meds for many years without any issue. My T cell count and all my blood work is fine. I am on Atripla and have tolerated it (and still tolerate it) very well. Then I got latent TB and was told to take isoniazid. I was on isoniazid for about 4 months (WITH THE B6 (pyradoxime) !!! THE WHOLE TIME!! which was supposed to "protect" against the neuropathy) and then it hit me.

At first it was just burning and tingling and some mild pain. It was like my feet were asleep but I could not wake them up. Not a big deal and nothing to panic about. The doctor told me to stop the isoniazid. And I did. Well, NO ONE REALLY told me that this was going to last--for a LONG time....! And for me, that was the real test. I went for several days and it did not go away. Day and night, all the time, the same tingling and burning. I think, in general, most people are used to getting better after being struck by something. At least that was how my brain was thinking. But I did not get better. And stress made it worse. And the PN stressed me out !!! lol (not really lol, but ....). Some days were worse than others. Sometimes I would just cry myself to sleep, and then I could not sleep because of the tingling in my feet, so I would cry more, I would wake up crying because my feet felt the way that they did when I woke up. It was all the time. I wanted to cut my feet off (not really) but your mind will get so frustrated. It was like the feet worked ONE DAY and then the next day, they were gone! Some days they would feel so bad and the pressure and even swelling, the ONLY relief that I had was to sit with my feet in the kitchen sink, with the vegetable sprayer on full blast, freezing cold water on my feet, for maybe half an hour or so. And then I would feel better but then I would repeat it again every hour or so until my feet finally would "settle down" a little bit.

Needless to say, it was very difficult. Walking was hard. ALL shoes were uncomfortable. It was very depressing mostly because it was so sudden and because it is ALL the time--this feeling.

I tried gabapentin. No good. It made me feel like I had NO feet almost. And made me light headed. So, it may have relieved some of the feeling but not totally and then I felt like my feet weren't even there. It is hard to explain. At any rate, the medication was more "painful" with side effects and overall feeling in my feet and body, that I quit.

Then I tried amitryptyline. It did nothing for me. Then lyrica. I almost passed out from the lyrica. Ironically, it was EASIER for me to ride my bike to get around than to walk !!!! The pressure distribution and using my legs more than my feet felt better !!! So I rode my bike everywhere. The reason I bring this up is because it was WHILE riding my bike--full aerobic activity--that I felt like I was almost going to lose consiousness while taking lyrica !!! So, that was out.

But yeah, back to the bike--good tip ! Try it if you have peripheral neuropathy ! Just try it! If you have enough coordination in your ankle and you are not riding anywhere but the sidewalk and at a SLOW pace for safetly, this is 100% better than a wheel chair or walking !!!! And it gets the circulation going in your legs. I'm assuming this was all good for me.

I live in DC. And I even rode my bike ALL through the winter. Even with sandals on sometimes (because one of the WORST things about my PN was that my feet would OVER HEAT A LOT !). If anyone looked, I might have looked like a freak, but it is DC--there are freaks everywhere... And at the end of the day, it felt good on my feet and I had my motility !!!! But SAFETY FIRST. I ride/rode mostly on sidewalks and SLOWLY !! Sometimes NO FASTER THAN A BRISK WALK !!!! Mainly because my feet couldn't push that hard on the pedals but also because I wanted to be safe.

So no medications worked. I started to realize the nerves were just DEAD or so "confused" that there wasn't a medication that could "fix" them. I mean, when you have pain, medications BLOCK the pain receptors. When you have nausea, the nausea receptors are BLOCKED. But when the nerve is FLAT OUT DEAD or not working--you can't "block" or stimulate or anything to make them "NOT-dead".

The good thing is that the body DOES have the ability to a certain extent to repair peripheral nerves. I am not sure my body is repairing or replacing. And I will tell you why.

Even from the start of my PN, when I would do my own "tests" on my feet, I could tell, "mixed in" with the bad nerves there were still good nerves that were working. HOWEVER (and this is just my own theory, from experience), it SEEMED like the damaged nerves were sending out LOUD signs or nerve transmissions that were overriding the good nerves. I would take a pointed object, like a pencil, and stick the bottom of my foot or slide it across my foot, with extra pressure, and I could FEEL the NORMAL feelings BEYOND the "sensory overload" feelings being created by the damaged nerves or the peripheral neuropathy. Does that make sense? I am a 4th year Pharm D student. And when you study the pathophysiology, this theory really makes a lot of sense. There are millions of neurons in the body and BILLIONS in the brain !! If you stopped your isoniazid, there is a good chance you did not "kill" or mame every single nerve going to your periphery! In fact, you obviously did not affect every nerve if you are still able to walk and FEEL your feet at all !!

So anyway, so, months went by. After 3 or 4 doctors and a nerve test (that I did not need to tell me that I was not feeling anything !), I was diagnosed with PN. And the whole time, some doctors said "6 months" or "9 months" and others would not say. It is safe to say--you can never know. It is hard to quantify the damage to your nerves. Of course, the sooner you stop the isoniazid, the better the prognosis. So anyway, I went for 9 months, and for some crazy reason, I was SO hopeful, that all of a sudden, my feet would be better... and....well... they were not....

Fast forward to now. 1 year and 10 months later. I am 95% better!! I can walk and go to the gym and ride my bike (a little faster now). I even do leg work outs without much stress. I STILL feel my feet and the tingling and everything, EVERYDAY !!!! but it is absolutely managable. And sometimes stress or heat will cause a "flare" but I am used to it. And everyday (no, take that back, every 2 months, if I re-evaluate my feet), I am better.

Here are some things I learned (just like other people posted before, which helped me, I will post now !)...

1. Get sandals. I had 2 different kinds. Ones that had the memory foam in them (Nike makes a great pair) with a velcro strap over the top (no "thing" where it holds on by the toes--this will be uncomforable) AND I also got a pair of MASSAGING sandals....!! The kind with the little plastic "tips" that stick up in the them--like a hairbrush. Like you are walking on a hairbrush !!! These were great..! Back to my theory about the "good nerves that are left and not destroyed that are still there in your feet but being overtaken by the signals of the messed up nerves":

These massaging sandals, when I FIRST wore them, made my feet hurt HORRIBLY just by walking across the room !!! BUT it was like my feet were being stimulated in a new way ! I can't explain it. It hurt but it was like I was GETTING SOME IMPULSES THAT WERE REAL on the bottom of my feet, pain or otherwise, that felt NORMAL !!! The pain was not GOOD but it was a stimulus that was NORMAL FEELING. I can't explain it. You need to try it.

So that was my therapy. These sandals. And I would wear them with socks too. To keep from TOO MUCH stimulation on my feet.... And eventually, I wore them ALL THE TIME !! Everywhere. They started to feel SOOOO good on my feet.

I went online to find insoles the same way:

(Ugh, they won't let me post a link.... go to Foot Massage Insoles Acupressure Insoles Promote Blood Circulation on google shop or e bay or whatever... if you can't find or have a question, just message me)

See if that link works. Its the same thing. These massaging sandals were doing accupressure on my feet! Stimulating the good nerves that were STILL THERE !!!!

NOW, as of a few months ago, I can't even wear the sandals/insoles anymore. My feet are becoming too sensitive (LOL imagine that) to the little hair brush like "needle like" projections.

But this was sooo good for my feet, I think...!!!

2. Sleep with your feet off the bed with nothing touching them... that worked for me.

3. You know, there really isn't much else I can think of. I tried creams, and wraps, and cold presses, and heat presses sometimes, and everything. Nothing really helped--besides my sandals and the vegetable sprayer.

You just need to experiment on what will make you feel better.

Looking back now, the ONLY thing I can honestly say is that YOU CAN'T GIVE UP ! DON'T LOSE HOPE !!! You can and WILL get better. Realize that you WILL feel the crappy feeling in your feet ALL THE TIME !! This is life now BUT THAT IT WILL GET BETTER....!! Slowly.

OH, and I take all those supplements--L Carnitine, B6, B12, blah blah. I don't even know. All the other postings will have more info about which are good for the PN. I didn't research it too much. I am not sure how much they help. I mostly take them because it can't hurt and enough people swear by them !! AND if the healing is SO gradual, who can say what is really the reason for the healing? Is it just nature, the vitamins, the massaging sandals????? There is no way to really link what is making you feel better to what you are doing or taking, in my opinion.

So good luck. And just plan for the long haul...! Trust me. You will get better if you hang in there...!!!!

Welcome MikeLuk.

You didn't mention it so I will. Mortons Epsom Salts Lotion. Gave me real relief in about 15 to 20 min. Thanks for sharing, Ken in Texas.