IH8PN,

I had 'one' of those days this past Tuesday. It was the first time I've driven myself anywhere for about 2 months. Did a lot of cleaning around the house and drove my dog to the vet ! By that evening I knew.....I knew as always if I have a good day and do anything I'm going to pay for it......and I have since Tues night. I'm still hurting.......but I've come to feel that it's worth it to feel almost normal for a day....Like you....I can still feel the symptoms in my feet, hands, etc...I know it's there but I'm able to move around and my head is clear.

My daughter is going to have surgery on April 28 and I have to be there......I was given a wheelchair which I have used on occasion but never for as long as I'm going to have to use it in the hospital. I am not looking forward to it. I know I'll be able to walk a little.....probably in pre-op and her room. Just crossing my fingers that it will be a 'good' day.

Being barefoot is the best for me in the house. The only thing I wear on my feet is the slip on's with the Velcro strap across the toes.....when I take them off the little lines on the shoe bottom have made indented lines on the soles of both feet Thank goodness I'm in GA.....I have no idea what I would do if I lived in a cold climate. If I have to use socks I use the very thin foot socks.....of course mine are crazy colors and patterns so I get lots of comments on them from dr's and nurses. I'm business on top.....party on the bottom (dress clothes and crazy socks !)

Thanks for listening.

Debi from Georgia

So, feet started going numb today. It probably started before today, but was very obvious today. Especially the right big toe and ball of foot. The left toe too at a lesser degree.

The weird part to is that it's causing more pain. It's like some of the nerves are already dead and the ones that are still around are malfunctioning as a result and everything I walk on feels like rough sandpaper.

This steady progression is very hard to deal with. I'm trying to remain positive but I keep telling my family that I have a bad feeling that I'm not going to be able to walk by the end of the year. Just based on progression to date and mapping out a timeline that is where I'm headed. It's not dramatic, it's the truth.

Unless something happens to halt progression or turn this around. Although let's face it. I can't stand for more than 5-10 minutes at a time anyway so I'm not all that far from being disabled as I type this. The only problem is that it's not measurable at this point, so I can't even prove my handicap. I feel all alone today. Not one of my better days.

Update Time:

Its been 3 weeks so I wanted to make sure I posted something so I can continue to track my progress, especially with rapid changes occurring in regards to my symptoms.

First thing is first. After pleading with my Neurologist to try Gabapentin since the Nortriptyline wasn't giving me relief, he agreed and I started at 300mg x3 per day. Ten days later I contacted my doctor and told him I was going downhill fast with pain he told me to up my dose to 600mg x3 per day which is where I have been the past 3 days.

As far as symptoms go, things are changing, waxing, and waning. Off the top of my head i recalled this all started with deep aches in my heels and arches with burning on the top of my. The arch pain is mostly gone, the heel pain has subsided a little, and the burning has turned to more of a freezing sensation. My feet feel really cold at times stimulated by things such as socks of all things. The things is my feet aren't cold to the touch. The skin on my foot soles has become increasingly hypersensitive at times as if they have been rug burned. Shoes and socks have become unbearable as a result, and being barefoot feels best. The toes on my right foot have become sore and feels like I'm walking on shards of glass at times. Thats fun. Also the rubbing of pressure points of my shoes are real bothersome to my right foot.

I have a Nerve Conduction Study in 2 weeks. Depending on how that goes all request further blood testing since my neurologist seems to think we've hit all the important ones. (wrong) I guess at this point I'm still leaning towards a toxic or autoimmune cause although based on my symptoms and progression there are no specific causes that jump out. I still won't rule out alcohol even with the abnormal progression, but it's the only other thing that I can attribute the neuropathy to.

I bought an exercise bike to get the blood flowing since walking more than a few minutes at a times is out of the question. I deeply hope that the change in symptoms is a good sign, because it's extremely scary and overwhelming when a new symptom pops up. I'm doing what I can to turn this around, I can only hope for the best at this point.

-Left foot symptoms 131 days
-Right foot symptoms 84 days
-Days on Nortryptiline 59 days (30mg)
-Days on Supplements 53 days
-Days on Gapapentin 13 days (600x3)
-Days sober 36

The bike may make problems worse for you. I found that bikes, both recumbant and vertical and the calf machines at the gym
made my PN much worse or invoked a flare.

So you may find the same....please start at short intervals, like 5-10 minutes only with little resistance. If you have any compression anywhere, movement of the ankle may increase it.

Also I forgot ....did you have heavy metal screening? Accidental ingestion of heavy metals can cause a rapid PN. Arsenic is the most common, but mercury and/or cadmium are also potential culprits.

I've been doing 20 minutes at a time on the bike. The shoes and socks are a little bothersome but the actual cycling hasn't caused problems. I get a noticeable flare afterwards from the activity, but I feel generally better the rest of the day. The increased blood flow and oxygen seem to be helping.

I still haven't been tested for heavy metals, but after my nerve conduction study I'll be pushing for further testing based on the results. Me and the neurologist are still working things out and building trust. He's been very responsive to my emails but obviously isnt as interested in my case as I am. I'm my own advocate at this point.

The best thing we can all do for ourselves is to be our own advocates. Your right our doctors have to divide themselves between many patients. We only have to research info for ourselves.
I've taken info from people on this site to my doctor and think I've given him some new info.

Thank goodness, he is receptive!
Hopeful

Thought of the day.

I can't think of any other injury, illness, or disease in which you can have the best day and worst day of the month all in the same day. This disease is truly a mind trip. I'll use this bit of insight to get me through the rough patches. I'm sure everybody who's been through this already knows that sometimes you just have to get through the bad days (flares) and tomorrow will be brighter.

On the opposite side of the spectrum, we can't be discouraged when tomorrow is worse than today. Just one of the many lessons PN has taught me. I hope one day I can get through this and use what I have learned to improve myself as a person.