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Old 03-02-2014, 04:20 PM #21
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Originally Posted by mrsD View Post
Raw feet? Epsom salts shouldn't cause that, but they will sting, if used on raw skin.

I wonder... do your feet normally sweat when you wear socks?
If you normally sweat and there is a residue in the socks of soap and/or fabric softener, this will dissolve in the sweat and burn and irritate the skin on your feet.

If so, I am going to suggest that you give your clothes an extra rinse when washing them. Lots of soap will come out during that second rinse...if you watch it you'll see. Then DO NOT use a fabric softener. The chemicals in fabric softeners can cause all sorts of skin grief.

Also if you have athlete's foot, you will have red/raw skin on the bottoms of the feet. Sometimes people think their fungus is gone, but it is still living in the deeper areas of the dermis, and can cause burning by stimulating the nerve endings there. If you had athlete's foot in the past, I'd suggest using Lamisil for a week and see if things improve. Lamisil is the strongest one out there and there is less resistance by the fungus to it.
I don't think it's athletes foot. I don't have the best looking feet but even in my suspicious paranoid state I can't make a case for any signs of fungus. I could be wrong so I'll continue to monitor them.

My best guess is the sensitivity on the foot soles is related to the frequency and temperature of the water in regards to my foot soaks. Hot water felt so good at the time but it might have caused adverse effects including sensitivity. No obvious skin burning, but they almost feel "sunburned"

I'll try the double rinse with laundry as well and see if that helps, as it is something I never even considered. Thanks. I'll report back any changes.
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Old 03-02-2014, 04:39 PM #22
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A word about hot water - lukewarm water, not hot water, is the best for me. Otherwise, my feet can tingle and almost have a burning feeling. I have to be very careful.
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Old 03-14-2014, 11:29 PM #23
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It's been 2 weeks since my last update and I have a lot to share so bear with me.

I had my appointment with a Neurologist for the first time today. The physical exam and questioning was largely unremarkable other than mild temperature deficits in the tip of my big toes. I was slightly worried that since I have no significant motor or sensory deficits, the neurologist would dismiss me as a hypochondriac which has been a reoccurring theme with previous doctors. I explained as many details as I could including the alloydnia, pain, and progressive symptoms. He took my word for it, started some more blood tests, and we are in the process of setting up a nerve conduction study. I don't have my lab results but will post results when I get them. (HIV, LYME, HEP, Autoimmune) So at least I have the ball rolling on finding a cause and ruling more things out.

I asked if we could try another medication in conjuction with the nortiptyline that I'm on. He wanted to up my nortiptyline to 50 mg a week for the next 2 weeks before we move on. It's early in my PN so that's a fair enough request.

The bad news is that the pain was at an all time high today. Maybe the strain from walking around the hospital and the anxiety of meeting with the neurologist caused some extra stress. burning in the soles of my feet is at an all time high. Walking on the carpet at home feels like walking on hot pavement. No good. The burning going up into my shins was pretty intense as well, but has subsided a bit as I write this. The foot ache is still prominent in my right foot and I still can't localize it no matter how much i investigate.

I had a feeling of skin rawness on the soles of my foot that i was trying to figure out as well. I've come to the conclusion that it's just another symptom of the PN. Socks have become very uncomfortable as a result. Kind of like walking on sandpaper and no fun. So overall not good as far as symptoms go in the past 2 weeks.

I also hit the month mark on supplementation and I can honestly say my pain is worse now than when I started the supplements. A little discouraging, but I have to be patient and stick with the program. I know it may get worse before it gets better. I know it may never get better. Either way I have to give my body a chance.

-110 days since left foot symptoms
-63 days since right foot symptoms
-38 days on Nortriptyline
-15 days sober
-32 days on supplements

Taking it one day at a time. I get very overwhelmed when I think ahead in terms of weeks or months. Just hoping tomorrow is better than today.
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Old 03-15-2014, 12:33 AM #24
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Originally Posted by IH8PN View Post
Just hoping tomorrow is better than today.
Beware today (the Ides of March)

Quote:
I also hit the month mark on supplementation and I can honestly say my pain is worse now than when I started the supplements. A little discouraging, but I have to be patient and stick with the program. I know it may get worse before it gets better. I know it may never get better. Either way I have to give my body a chance.
Hang in there. If/when the supplements do kick in, it may be gradual/difficult to notice at first.

Doc
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Old 03-15-2014, 05:33 PM #25
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Originally Posted by IH8PN View Post
It's been 2 weeks since my last update and I have a lot to share so bear with me.

I had my appointment with a Neurologist for the first time today. The physical exam and questioning was largely unremarkable other than mild temperature deficits in the tip of my big toes. I was slightly worried that since I have no significant motor or sensory deficits, the neurologist would dismiss me as a hypochondriac which has been a reoccurring theme with previous doctors. I explained as many details as I could including the alloydnia, pain, and progressive symptoms. He took my word for it, started some more blood tests, and we are in the process of setting up a nerve conduction study. I don't have my lab results but will post results when I get them. (HIV, LYME, HEP, Autoimmune) So at least I have the ball rolling on finding a cause and ruling more things out.

I asked if we could try another medication in conjuction with the nortiptyline that I'm on. He wanted to up my nortiptyline to 50 mg a week for the next 2 weeks before we move on. It's early in my PN so that's a fair enough request.

The bad news is that the pain was at an all time high today. Maybe the strain from walking around the hospital and the anxiety of meeting with the neurologist caused some extra stress. burning in the soles of my feet is at an all time high. Walking on the carpet at home feels like walking on hot pavement. No good. The burning going up into my shins was pretty intense as well, but has subsided a bit as I write this. The foot ache is still prominent in my right foot and I still can't localize it no matter how much i investigate.

I had a feeling of skin rawness on the soles of my foot that i was trying to figure out as well. I've come to the conclusion that it's just another symptom of the PN. Socks have become very uncomfortable as a result. Kind of like walking on sandpaper and no fun. So overall not good as far as symptoms go in the past 2 weeks.

I also hit the month mark on supplementation and I can honestly say my pain is worse now than when I started the supplements. A little discouraging, but I have to be patient and stick with the program. I know it may get worse before it gets better. I know it may never get better. Either way I have to give my body a chance.

-110 days since left foot symptoms
-63 days since right foot symptoms
-38 days on Nortriptyline
-15 days sober
-32 days on supplements

Taking it one day at a time. I get very overwhelmed when I think ahead in terms of weeks or months. Just hoping tomorrow is better than today.

Hi,
I'm happy for you that you finally found a doctor who will listen to you. It also sounds like you r willing to try what he suggest for now. You must have some initial trust in him.

It is not unusual for socks or shoes to be annoying. I love summer, flip flop are a good friend of mine.

As Dr. Smith pointed out, the supplements may take a while to help. Try to hang in there.

This disease process, for me, can change day to day. Originally, I couldn't go without wearing slipper sock.

Congratulations on your 15 day sobriety. It can't be easy but is necessary.

Hopeful
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Old 03-15-2014, 06:05 PM #26
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I would say at this point, if you are WORSE since starting supplements, I'd discontinue them for now.

Keep the B's and stop any others temporarily. One has to have
good kidney functions to take supplements. Do you know your kidney status?

The B's are used in alcohol rehab clinics for just about everyone.
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Old 03-15-2014, 11:45 PM #27
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I would say at this point, if you are WORSE since starting supplements, I'd discontinue them for now.

Keep the B's and stop any others temporarily. One has to have
good kidney functions to take supplements. Do you know your kidney status?

The B's are used in alcohol rehab clinics for just about everyone.

I respect your opinion mrs D. Yesterday was a really bad day, and maybe not the best for evaluation of my condition. Today has been better. Just the ups and downs of this condition it seems like. Some days I feel better and some worse. Makes it hard to know if you are getting healing or deteriorating.

I'm going to continue the supplement regimen until I run out and reevaluate. Burning sensation has been down today. Maybe it was stress yesterday. I guess I need to figure out what causes my flare ups. It is more likely my condition is about the same as a month ago with a bad flare up yesterday.

I'm starting to doubt alcohol as the culprit with acute symptoms progressing over about a 2 month period and somewhat stabilizing the past month. Either way I think it's safe to say an alcohol free environment is ideal so I'd still like to give it up as I attempt to recover.
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Old 03-16-2014, 02:09 AM #28
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Originally Posted by IH8PN View Post
Some days I feel better and some worse. Makes it hard to know if you are getting healing or deteriorating.
Keeping a diary/journal/log can help a LOT. Recording pain levels, stress levels, other symptoms, what you ate, activities, etc. can help deduce triggers & alleviants and chart general/overall progress over time.

You can find templates online for ideas and/or come up with your own.

Doc
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Old 03-19-2014, 09:49 AM #29
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Originally Posted by IH8PN View Post
I'm going to continue the supplement regimen until I run out and reevaluate. Burning sensation has been down today. Maybe it was stress yesterday. I guess I need to figure out what causes my flare ups. It is more likely my condition is about the same as a month ago with a bad flare up yesterday.

I'm starting to doubt alcohol as the culprit with acute symptoms progressing over about a 2 month period and somewhat stabilizing the past month. Either way I think it's safe to say an alcohol free environment is ideal so I'd still like to give it up as I attempt to recover.
I have been on all the PN supplements for two years and I don't think they have helped at all. Then again, maybe my symptoms would be worse without them so I take them anyway.

I too doubt that alcohol is the culprit for my PN but with nerve damage, it is always best to steer clear of alcohol and sugar as much as possible.
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Old 03-22-2014, 06:36 PM #30
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Had to sit down for a minute and document my day. I woke up feeling my normal PN pains. Sensitive foot sole, general achiness in my feet and legs, mild foot burning etc.

After walking around a little I noticed my pain was decreased a little today so I figured I'd try to help out with a few simple chores around the house. My wife has had to take on extra responsibility due to my PN pains and decreased mobility and I wanted to help out with whatever I could. I started by cleaning up the kitchen, washed the dishes, sanitized the counters, put stuff away. I was still feeling ok so I moved on to vacuuming, then dusting, and generally straightening things. I did a few loads of laundry. Well I still felt comfortable on my feet so I got adventurous and mowed the lawn. Then I pulled some weeds, and threw some stuff out from the garage that I've been meaning to get to.

I couldn't believe how much I got done. I was still in discomfort and was constantly aware of my feet the whole time, but it wasn't complete agony like it's been for me in the past few months. I haven't left the house in over a month accept to go to work because walking has just been to difficult. I'm feeling good enough at the moment to go out to dinner with the family tonight! I'll take any relief and reason to smile that I can get at this point.

I'm not sure what I would attribute feeling better to, but it felt good to be mobile. I hope I don't pay for it tomorrow. By no means do I walk or stand without discomfort, but I feel I'm finally moving in the right direction even if its only for a day.
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