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Old 03-23-2014, 02:03 PM #31
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Originally Posted by IH8PN View Post
I hope I don't pay for it tomorrow.
IME, it just goes that way—good days & bad days—often unpredictable and/or with no rhyme/reason. What ever happens, stay frosty, take the day (week/month...) as it comes, do what you can/gotta do, and illegitimi non carborundum!

Doc
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Old 03-23-2014, 02:39 PM #32
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IME, it just goes that way—good days & bad days—often unpredictable and/or with no rhyme/reason. What ever happens, stay frosty, take the day (week/month...) as it comes, do what you can/gotta do, and illegitimi non carborundum!

Doc

Today has definitely been worse than yesterday. Oh well, I knew yesterday was too good to be true. I'll just keep sticking to the plan and hope for gradual recovery, improvement, and more good days!
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Old 03-23-2014, 05:45 PM #33
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Congrats on a good day. I too have an occasional good day and if I do a lot (a lot for having PN that is), the next day is always more challenging.

Stay mobile.
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Old 03-24-2014, 05:22 PM #34
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Congrats on a good day. I too have an occasional good day and if I do a lot (a lot for having PN that is), the next day is always more challenging.

Stay mobile.
Thanks beatle, I'm not sure if I over did it On Saturday but I'm not feeling too great the past 2 days. It's definitely difficult to deal with a bad day after a good one, but having a good day was a boost to my mental health at least.
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Old 03-24-2014, 06:13 PM #35
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I know what you mean. Just when I think my PN will stay the same, or even stabilize, it changes, sometimes better, sometimes worse.

Let's have more good days.
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Old 03-28-2014, 01:37 AM #36
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Update time: I'll start with a little good news. The first symptom that really took my breath away early on in the PN progression was a deep ache in my foot. It has been noticeabley down lately allowing me to stand on my feet for longer periods at home.

The bad news is I really can not stand shoes and socks. The counters of any pretty much any shoe bother me and make my feet feel "lumpy" That symptom has really been getting worse lately and its frustrating. Same goes for socks. Just can't wear them. Too tight and feel like sand paper not matter the material. Have to wear thin dress socks and a combination of shoe insoles just to make it through the day at work. I worry I may never be able to walk normally in shoes ever again. very depressing.

Burning comes any goes but hasn't been too bad. More of a symptom exacerbated by shoes and socks. I'm mostly fine when barefoot, although sometimes my feet will feel really cold out of nowhere for no reason it seems. Extremity parenthesis hasn't been much of an issue recently, but is not gone. Maybe medication or vitamin suppressed for now.

I was really stuck on the idea that my PN was only small fiber, but as time goes on I feel like deeper nerves in my foot are affected. Something about the deep ache and positional sense my feet feel in different environment. I don't have any science based reasons for this hunch, just a gut feeling for now that I plan on investigating further.

Started gabapentin last week 300mgx3. Can't say I've noticed much relief, although maybe it's helped with burning which really hasn't been my top complaint anyway. Still on Nortriptyline 30mg, but I'm still thinking of tapering off that because symptoms have progressed since I started taking it and I want to see how I feel without it.

I'm awaiting my NCS in 3 weeks and until then won't have any further testing. So for now I continue the supplements, stay off the booze, and keep my fingers crossed that everyday is better than the one before.
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Old 03-28-2014, 05:24 AM #37
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There are softer socks available... WalMart carries them...diabetic socks.

Also on the RSD forum, some of them with severe foot pain, use
bamboo socks. I haven't tried that, yet.

The number of suppliers has recently exploded on Google.
Avoid tight socks around the ankle... compression there can
affect the nerves going down the leg into your feet.

There are even "relaxed fit" socks now. My son had to buy them.
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Old 03-28-2014, 09:09 AM #38
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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.
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
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Old 03-28-2014, 03:27 PM #39
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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.
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Old 04-04-2014, 07:10 PM #40
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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
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