Vent about Permanent Neuropathy
Comments
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GEE, LET US KNOW IF IT HELPS!
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NBI, Why do you like the lidocaine cream? If your feet are mainly numb, doesn't that just make them number?
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i just put it on at night when they are painful - haven't found anything that makes the numbness go away
one thing i have found when i swim is that my toes get like little charlie horses sometimes - they cramp up when i'm kicking as I swim...anyone else experience this?
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NotBuyingIt - Yes to occasional cramps in the water, but more in my calves. I've always gone bare footed, but now I'm wearing water shoes. Hate them, but... Also had to find "toe caps" since I'm still in the process of losing my big toe nails. Such fun!!!
Sometimes i think I might be getting some feeling back above my ankles. Woo Hoo.
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not---count me in on the foot cramps while swimming! dang but they can be scarey when they hit
been ok recently, also been working on my crappy balance and someone suggesting walking front and back in the pool. Do believe that is helping my balance as well as the training with my trainer. I recently started working with him again after going on my own for the last 6 months, huge help to me!
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I noticed soreness in the first months, but that is mostly gone for me now. Just the numbness remains. Haven't done swimming yet.
MinusTwo, my numbness was going up my leg in those first months, but it seems to only remain in the feet now, so I think your legs would be the first to notice the reversal should it occur. Every little bit helps!
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glad it's not just me - i figure any feeling is good, right? but it doesn't feel good - i've been putting them up to the bubblers...somethings gotta work....and when i find out what it is i'll make millions!!! lol I gotta think about something while i'm trotting around the pool
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I have been thinking a lot about the wax dip from my last pedicure...when they did it my feet were screaming and then they felt better. I did do some reading that some found temporary relief from wax dip...not sure if it is related but my feet are feeling better. I feel like the dip woke my nerves up....if anyone tries this please let me know.
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gonna try, I know it felt good on my manicure
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LoveWins - can you mandate that I have my feet waxed for neuropathy while on a cruise? That would be a wonderful excuse. Sigh!! But yes, I will try locally.
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I've never heard of a wax dip; do they dip the whole foot?
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I had to google it too. Sounds interesting. Would a warm water foot bath or heating pad give the same result?
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I think warm foot bath is sure worth a try! hmmm, next time they ache...can not hurt more than now!
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Some people report a burning feeling as part of their pain. Don't know how a warm soak would feel on that.
I never had that. My pain was more a cold, crushed feeling. A warm soak that got my blood circulating always felt good to me.
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times my feet feel like Arnold S has been crunching my toes in his dang hand!! not sure but it usually happens at night after I have been walking
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I have a home paraffin unit that wasn't too expensive (some beauty places carry them, otherwise medical supply places, but generally more costly there). I don't often get the burning feet thing, mine is usually the frozen foot thing. You dip your foot into the paraffin, bring it up and let that coat set briefly, then redip, repeating several times. Then you put a plastic bag over the foot, followed by a cozy bootie to keep the heat in. When the paraffin has cooled you peel it off and put it back into the unit. I've found this very helpful for when my feet are killing me, toes seem so cold they feel like they're going to drop off, feel like rubber bands around them choking them off or something. I use it at those times and it gives me relief. It hasn't changed the frequency of this happening, but being able to get relief is wonderful. I also have a heating pad made for the foot of the bed, it goes all the way across. I use both of these things in the winter but find I can warm my feet up without them in the summer.
P.S. If you get one of the paraffin units you have to keep the wax melted in it as it takes too long for it to warm up for you to just plug it in when you need it.
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proud, My description of the cold, crushing sensation was that I was in an ice shanty with an elephant standing on my toes. Yes, the feeling set in the worst at night when I was not walking around on them.
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elimar, ooo, I do get it though.
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never had success with warm foot soaks - but also don't have the cold crushing sensation...
i did however buy the raisins & gin today
might have to just administer the gin while i wait the 7 days...0 -
not buying it, you will need to do what you need, do let us know!
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Raisins and gin????? What did I miss?
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NotBuying - I've read about raisins & gin over the years but thought it was only for arthritis. So far I'm just administering the gin with tonic & lime over ice. Found the following on line. Is this what you're using? Do let us know what determine with your trial.
To prepare gin-soaked raisin, first empty one box of dried white
raisin in a shallow container. Only white or golden raisin should be
used for this recipe. Then pour enough gin into the container to cover
the raisin.Cover the container and keep it covered for 7 – 10 days to allow the raisin to steep in the gin.
Allow all the gin to evaporate to leave gin-soaked raisins in the
container. These raisins keep well when refrigerated. The popular advice
is to take nine of these “drunken raisins” every day. Most users report
improvements in arthritis symptoms between 1 – 8 weeks of using this
remedy.0 -
I missed it too....I have vodka and raisins.
Disappointed with foot cream from etsy...smell good and my feet feel moisturized....but did not help pain.
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topricin foot cream or the regular topricin just make mine feel better. it is homeopathic and was supposedly formulated for diabetic neuropathy., i swear it works for me. i have tried both kinds. some health food stores, i know amazon has it, and the vitamine shoppe. i buy it by the bucket loads. the shoes i love to wear are my keen sandals, and my merril slip on loafers. i really only mainly have it in my right foot, ball and outer edge. sometimes it s hot, sometimes cold, i think its just that my feet are exquisitely sensitive to everything. i feel like i am walking around on a layer of rubber when i first get up. but it does feel better the more i am on them sometimes, and like elimar, i am always flexing them, even if i am lying down or sitting. i have done exactly two pedicures since, cant really afford it, but it creeps me out while they are doing it, not ticklish, exactly, but later i think my feet are glad. this place doesnt do the mud or anything like that, but they massage your neck and shoulders, down your arms, your hands, and your feet up to your knees. my friend got me a gift certificate for one there several years ago cause i never had done one, and oh my, i did cry a little, it felt so good. and looked better than i ever did them! i have stuck salonpas on them. no luck with sample from pcp of voltaren gel. the place i do go, doesnt believe i have it. but they did let me see a neurologist, who told me get this, anywhere there are nerves, you can get neuropathy. even in your ears. i didnt know that, so am grateful it is mostly on one foot. i was icing during infusion, i brought a bagful of those frozen gel things. i would keep it on for as long as i could stand it, then reapply as soon as i could. it also is the platinum chemos that do it, i knew cause my aforementioned excellent friend had it from cisplatin, and paclittaxel, both cause neuropathy. she had it bad. clinical trial, for lung ca, and she lived 10 more years. she was stage four at getgo, and she refused all other treatment. they were very interested in her because of her longevity....but she was so upset with them because the neropathy really did a number on her, thats what scared me about chemo... i do go on, i must be lonely or avoiding housework today.
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yep that's the raisin recipe - Ruthbru posted it - must have been a different thread - & yes it is supposedly a cure for arthritis - which i also have - so i thought, why not? could work - i will let you know in 7 days
8 weeks of eating drunken raisins I should be golden lolTopricin? what does that have in it? don't think i've tried it...- I never knew about icing during infusion - no one said anything about it - I never really worried about nueropathy because i hadn't even heard of - sometimes the doc would say "any tingling in your toes?" but it didn't happen til a month after last treatment.
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I learned something today maybe you all already know, but I found this very interesting today when I was listening to a dr talking on the radio about a new treatment for pain where they kill the nerve to stop the pain. The part I found interesting is that a nerve grows 1 inch in 6 months. I think the nerves in my feet are growing back....it is now 7 months for me PFC. I would say my feet have about 25% more feeling than they did....and I mean feeling that isn't painful.0 -
i hope you are right!!!
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lovewins, I hope so, you're still early days yet so it is certainly possible. We're all routing for you!
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lovewins, I had never heard that before. That sounds about right because those of us that notice some feeling coming back all report that it is at a barely perceptible rate.
I do think that the nerve growth continues on after the two year mark (despite what emphasis the doctors put on that two year point,) but at some point the nerve recovery must reach a brick wall because some CIPN stays permanent even after years. So, that makes me wonder...I felt my nerves affected all the way up to my calves, and that's got to be 12 inches or more. I think I only had partial damage in the leg nerves and that was almost all gone by six months. The nerve endings in the feet were more severely damaged. I don't know if those nerve fibers can recover or if new nerves will have to grow. I would like to think I can come back all the way.
Going to wait a few weeks to write on any progress, because I have being doing that on a monthly basis. Unlike last month, I might have some progress to report.
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soo i started the Arimidex pill and have been chatting on the thread for that & am wondering what if any affect this drug has on our nueropathy damage...i feel like my has gotten more intense...what do we think?
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