[IH8PN]

Hello all, new here and wanted to share my story. I'm a 33 year old male and I've been lurking around here few days and have already amassed a wealth of information and inspiration. I don't post much on message boards, but I feel it's time to add to the collective information here. If I can help just one person by sharing what I've learned, then to me it's worth the time.

It all started in late November 2013 when I awoke to a sharp, electrical stabbing pain in my left foot which lasted about 15 seconds. After rubbing my foot to see what was going on I also noticed a pea sized bump close to the area of the pain. Curiosity got the best of me as usual and I began researching on the internet and found out it was a fibroma as confirmed by my Doctor and a Podiatrist.

Over the next month I noticed vague pain and discomfort over the sole of my left foot. It felt lumpy, swollen, sore, and sometimes numb from heel to ball of the foot, although besides the single fibroma I couldn't notice any visual difference. The sensations were always changing and moving around and it was driving me crazy. I was convinced the pain was from the fibroma growing. The podiatrist diagnosed me with plantar fasciitis, but my symptoms were so atypical I argued that I didn't believe that was what was the underlying cause of the pain.

I didn't know what else to do so I followed the plantar fasciitis regimen of icing, stretching, massage and rest. I had a difficult time finding shoes that were comfortable and went through 4 different shoe insoles 7 different slippers, shoes, and work boots just to get through the day. The pain eased up a little over the next month and I was able to tolerate it somewhat. Then it happened...

My right foot soon became bothersome. The first time I noticed it was at work. After a few hours of wearing some new boots. I began getting numbness, tingling, and burning in both feet. The right was actually more painful than the left. When standing I felt like I had no cushioning under the heel or like I was walking on bone. I wore those boots for another 2 weeks until I was able to go shopping for a new pair. They didn't feel tight when I put them on. but after wearing them for a few minutes my feet started killing me.

Over that time my right foot experienced all kinds of weird symptoms. Heel pain, burning/cramping/rawness in the arch, raw/burning/numbness in the big toe, burning over the top of the foot. Shoes became torture devices and it was actually better walking barefoot on my wood floors at home for whatever reason. Depression soon followed my two bad feet, a seriously declining quality of life, and fear of the future.

I originally convinced myself that I had two separate problems to tackle (ie the lump in my left foot and nerve damage caused by tight shoes) I did have one episode where I woke up to tingling in my left arm that last for 2 hours, but I chalked that up to anxiety. So I was off to see my doctor again. We talked about both my feet as well as getting treatment for depression. Since the burning and tingling in my right foot was more pronounced I didn't really mention the left foot or left arm sensations that I experienced it. He said it was an unknown nerve/nueropathy issue and started me on Nortriptyline at my request for pain relief.

Next I saw a new Podiatrist with whom I shared the same story. He said it's a common symptom from tight shoes and to give it a couple months to go away. I agreed at the time and didn't think too much of it.

Well the past week has been absolutely hell for me. Both my feet have been burning and tingling with occasional twitching and lighting type pains. The right leg goes half way up my shin. I have also had several nights in a row where I had pretty intense burning in both my hands and arms. I wish I was more aware of the symptoms last time I saw the doctors so I could press the issue a little more.

The increased symptoms brought me here after searching the internet and things are becoming more clear. The things I have been feeling have been echoed by so many people diagnosed with neuropathy. I'm attempting to get a referral from my doctor to see a neurologist but he wants to wait 2 more weeks and see how things play out. I can't really blame him. I have been very much a hypochondriac the past few months because I could never put my finger on what was wrong with me to get accurately diagnosed and treated. I really think I have found the answer and now would like to find the possible cause and treat it.

To Be Continued...

[IH8PN]

I realize that was a lot to read but I'd like to summarize and accept opinions and criticism.

-Left foot PN symptoms x 10 weeks
-Right foot symptoms x 5 weeks
-Arm burning tingling x 10 days (worse the past 3 nights)

-Vitamin D level = 26
-Vitamin B12 level >1000
-Blood Glucose levels= Normal (No reason to believe diabeties)
-Heavy alcohol use on and off x 12 years (Most likely cause of PN symptoms)
-3 days sober as of today

-I started taking ALA, B12, D3, Benfotiamine, B Right Complex, ALC, Fish Oil
(as of today)
-Taking Nortriptyline x 1 week
-Seeking referral to nuerologist for consultation
-Have appt with a psychiatrist to deal with anxiety/depression
-Cutting down sugar/carbs & upping fruit, vegetables, and nut intake

-Most importantly I'm thinking about my daughter and wishing I didn't wait so long to get my health in order. It breaks my heart every time I think of what I'll miss out on due to my selfishness and poor decisions the past decade. Thanks for listening

[Susanne C.]

You will get better advice on dealing with alcoholic neuropathy, often at least some damage is reversible provided you stop drinking.

I just wanted to comment on your point that the doctor thinks you are a hypochondriac because the symptoms are all over the place- we all have that problem. Neuropathy is notoriously difficult to describe. As I type this my right hand is numb and buzzing, both legs are numb to the hip with a deep soreness, my forearms are weak, and my ankles feel like an ace bandage is wrapped too tightly around them, even though I can't tell without looking whether I am wearing socks. It is a crazy assortment of weird sensations which only make sense once a diagnosis of neuropathy is made. I carried my test results around for a couple of years because I had trouble believing I was "entitled" to my level of disability without them. Many people are in as bad or worse shape without "hard" evidence and I think I would go crazy in their circumstances.

Everything that you describe is consistent with neuropathy. Sorry that you are dealing with this but welcome to the forum. It does get easier to cope after a while.

[IH8PN]

Thanks Susanne, for the reply. I'm going to email my doctor today and let him know whats going on. I can't let being bothersome interfere with getting help. If he thinks I'm crazy, so be it. I know something is wrong with me and its not just anxiety or paranoia.

I went to bed feeling pretty good. Very little burning or pain. Woke up to burning in both arms and legs. Not looking forward to the rest of the day.

[hopeful]

Welcome!
There are many people here with a lot of great advice. As far as doctors go be polite but firm. Don't let them treat you like you r imagining this. If your doctor does treat you that way find a new one. I have been fortune that most doctors I've seen believed everything I said.
Early treatment is important so keep pushing. If you do not need referrals go on line and check reviews for neurologist in your area. Chose your own and make an appt.
Good Luck and keep us posted!

[IH8PN]

I've decided to use this thread to keep track of my progress/decline sort of like a personal diary, and also allow other people to follow. I've gathered great information and inspiration following the progress of others and would like to add to our collective knowledge and experience. I'll try and update at least once a week as long as I can.

So as of today it has been...
-82 days since first symptoms in left foot
-35 days since first symptoms in right foot
-10 days since starting Nortriptyline
-7 days since last alcohol
-4 days since starting supplements

I realize that things will probably get worse before I can expect improvement, but it would be nice to find some signs of hope. It's been all down hill the past 3 months, and today I've even noticed increased pain in mt right foot. An added "bunched sock" feeling behind my middle toe. The arch of my right foot cramps and feels raw. Theres a sharp pain in the ball behind my left big toe like I'm walking on a rock. Mild feelings of swelling on my foot soles that come and go. Burning in both feet to just above the ankle. Mild burning in hands and arms at night.

I spoke with my mother a few days ago as I was feeling down. I told her how I was feeling and she mentioned that she has dealt with burning in her feet for almost 20 years, although she was never officially diagnosed with PN. She said my grandmother went through the same thing. My pain feels more severe than what she described, but now I'm thinking it could be a hereditary thing worsened by my prolonged alcohol use. (Just my best guess for now)

So here I am trying to take it one day at a time keeping my diet in check and trying not to fall into the depths of pain and depression. Wish me luck!!!

[Icehouse]

IH8PN,

I don't spend much time in this thread, but this one caught my attention. Take a quick minute or two and have a roll through the pages of the link posted below.

I have PN from 22 years of drinking and I am still getting over it 928 sober days later. It is reversible in some cases and I am living testimony that it does.

http://neurotalk.psychcentral.com/thread104096.html

Good luck and keep up with the sobriety!!!

[IH8PN]

Thanks for the link Icehouse, but I've read through that thread twice already

Actually you are one of the people here who has inspired me to get on the right track. (You & Wide-O are inspirations when it comes to turning around your life from the grips of alcohol) I'm not 100% sure my PN is alcohol related, but of all the tests run as of now it is the most likely cause in my opinion. When I meet with the neurologist I may be able to explore some other possibilities, but as of now I'm treating it as alcohol related PN in how I treat my recovery. Even if it's caused by something else, I need to stop drinking before the rest of my body begins failing.

I know I have a long road ahead of me. Some days have been brutal so far, and I'm sure I have many more to come. All I can do now is give my body the environment it needs to recover and hope for the best.

[IH8PN]

Not the end of the week, but I feel the need to post an update. Partly because it's been a bad day pain wise, and partly because I need something to take my mind off the desire to drink. My pain went up enough to cause my feelings of despair and stress which is ultimately putting my sobriety in jeopardy.

How can I expect to get better or seek the advice of others if I can't hold up my end of the bargain?

First my stats regarding the PN.

-87 days since left foot symptoms
-40 days since right foot symptoms
-15 days on Nortriptyline (up to 30mg a day for the past 2 days)
-12 days sober
-9 days on supplements (and working to improve my diet)

I can't believe these symptoms and pain have progressed so rapidly up to this point.

I know it would be ridiculous to think that after such a short time frame for "healing" I'd really have significant results already. But the past few days leading up to today gave me signs of hope. The burning in my feet and legs has been noticeably less and not very noticeable in my arms or upper body. Since I'm on the shotgun approach to recovery I cant say whether its the Nortriptyline or supplements that helped. Maybe it's a combination. I'm just happy that there is some relief and I'll worry about figuring out the reason later. That's the good news!!

The bad news is that today I've had increased pain in the soles of my feet. The feeling of walking on "bunched up sock" increased in the ball of my right foot. And the ball of my left foot is still walking on "rocks" which seemed sharper today. For some reason walking around barefoot feels better. Maybe the pressure is distributed just right to make it more tolerable. Walking around in shoes (pretty much any shoe, I've tried every pair I've owned) makes it worse. Anything with arch support is the worst. Makes it hard to leave the house or go to work!!

That brings me to the worst of my pain right now. My right foot has a dull ache which was brutal today. It's hard to pinpoint where it's originating, but the "arch supports" in shoes make it worse, so I'm thinking its originating around that area of my foot. Anyway it's impossible to stand in one spot for more than a minute or two without having to move or sit down. Sometimes its worst in the heel area and sometimes it seems to radiate up to my ankle. As soon as I sit down it quickly subsides as it is very much pressure/position dependent. At the same time I can't replicate the pain by pressing on the sole of my foot. Feels very much like I'm walking on the bare bones. One thing I have noticed is that I get a vague cramping feeling in the same area when I'm relaxing in bed. I'm not sure I'd associate the dull pain with PN, but the burning and dull ache began on the same day 40 days ago. It came on so suddenly and expectantly, I'll never forget that day as long as I live.

Anyway the pain made it very hard to concentrate on anything other than getting off my feet today and as we all know, stress only makes the nerves more agitated. I needed to put my feelings down to take my mind off of alcohol and continue to track my journey.

Days like this are really going to test my resolve to fight this condition. I'm still so young and have a lot of responsibility with a toddler and I don't have time to take a day off and feel sorry for myself. Thank goodness I have my first appointment with a psychiatrist next week. I really need to get my mental health in check to properly attack my physical problems.

[aggie]

Originally Posted by IH8PN

Not the end of the week, but I feel the need to post an update. Partly because it's been a bad day pain wise, and partly because I need something to take my mind off the desire to drink. My pain went up enough to cause my feelings of despair and stress which is ultimately putting my sobriety in jeopardy.

How can I expect to get better or seek the advice of others if I can't hold up my end of the bargain?

First my stats regarding the PN.

-87 days since left foot symptoms
-40 days since right foot symptoms
-15 days on Nortriptyline (up to 30mg a day for the past 2 days)
-12 days sober
-9 days on supplements (and working to improve my diet)

I can't believe these symptoms and pain have progressed so rapidly up to this point.

I know it would be ridiculous to think that after such a short time frame for "healing" I'd really have significant results already. But the past few days leading up to today gave me signs of hope. The burning in my feet and legs has been noticeably less and not very noticeable in my arms or upper body. Since I'm on the shotgun approach to recovery I cant say whether its the Nortriptyline or supplements that helped. Maybe it's a combination. I'm just happy that there is some relief and I'll worry about figuring out the reason later. That's the good news!!

The bad news is that today I've had increased pain in the soles of my feet. The feeling of walking on "bunched up sock" increased in the ball of my right foot. And the ball of my left foot is still walking on "rocks" which seemed sharper today. For some reason walking around barefoot feels better. Maybe the pressure is distributed just right to make it more tolerable. Walking around in shoes (pretty much any shoe, I've tried every pair I've owned) makes it worse. Anything with arch support is the worst. Makes it hard to leave the house or go to work!!

That brings me to the worst of my pain right now. My right foot has a dull ache which was brutal today. It's hard to pinpoint where it's originating, but the "arch supports" in shoes make it worse, so I'm thinking its originating around that area of my foot. Anyway it's impossible to stand in one spot for more than a minute or two without having to move or sit down. Sometimes its worst in the heel area and sometimes it seems to radiate up to my ankle. As soon as I sit down it quickly subsides as it is very much pressure/position dependent. At the same time I can't replicate the pain by pressing on the sole of my foot. Feels very much like I'm walking on the bare bones. One thing I have noticed is that I get a vague cramping feeling in the same area when I'm relaxing in bed. I'm not sure I'd associate the dull pain with PN, but the burning and dull ache began on the same day 40 days ago. It came on so suddenly and expectantly, I'll never forget that day as long as I live.

Anyway the pain made it very hard to concentrate on anything other than getting off my feet today and as we all know, stress only makes the nerves more agitated. I needed to put my feelings down to take my mind off of alcohol and continue to track my journey.

Days like this are really going to test my resolve to fight this condition. I'm still so young and have a lot of responsibility with a toddler and I don't have time to take a day off and feel sorry for myself. Thank goodness I have my first appointment with a psychiatrist next week. I really need to get my mental health in check to properly attack my physical problems.

Howdy! I am impressed with your thorough record taking! How did you go getting a neurologist appointment. Personally, I don't think it is the role of the GP to stop you from seeing one. Ask for the referral because a neurologist can do tests that a GP cannot do.
I have had all the symptoms you describe since I had chemo. I also have no thyroid and this may have influenced my situation.
I saw my endocrinologist and she upped my thyroid meds. Since then my feet are not as swollen ontop or underneath.
I saw my neurologist and she does nerve velocity tests - these show how fast the messages are travelling from one point to another. I would recommend you get tested for your feet to make sure there is no nerve damage further up your legs. Nerves need sodium and potassium - negative and positive charges to work properly so a neurologist can order a special blood test checking these levels; various proteins and also to make sure you have no dormant viruses which may be affecting your nervous system.
Let us know how you get on with an appointment and remain positive. If you feel like a pick-up there try some mocktails or smoothies. With your record taking and determination I reckon you could compile a healthy recipe book for us all! Best wishes! Aggie