Vent about Permanent Neuropathy

Glad to hear that your nails did grow back kmmd.  Mine are narrowing and maybe a toe nail grew on top of another toe nail.  They are very painful though. 

when I am on my feet,  they just ache, I woke up this morning with achie feet and now sitting here with pain in my hands, no idea why on the hands

The burning where my lymph nodes were removed and my breast hurt a lot more after radiation.  I  think I did something to my arm lifting too heavy of bags when I went shopping...now I think it is slight Lymphedema or maybe neuropathy, I don't even know what to blame for what anymore...LOL.  At least my joints in my knees feel better lately for a minute it was all I could do to get up out of my chair!  I joined a gym and see my personal trainer on Sat....hopefully it will help with all this weight gain. 

Bosum - you are so lucky not to be gaining weight w/your diet.  I lost 60 lbs during treatment but finally started eating my preferred bread & potatoes & pasta again two months ago and the pounds are piling on.

Love - Congrats on quitting smoking.  It's such a hard thing.  It's been 7 years for me now.

i quit also - tho there were & still are many times when i'd like to light up about 10 & smoke them at the same time LOL but i just couldn't be doing everything i was doing to get rid of cancer & smoke - something known to give you cancer. Now I can't stand even the smell, which is difficult because the DH still smokes quite a bit

so has anyone tired the sunburn relief gel on their feet? it has lidocaine in it & it really does provide some relief for me...Walmart has a brand that's pretty cheap

Good for you Notbuyingit!

LoveWins & NotBuyingIt - if you have a free minute, drop the Stop Smoking Support thread and tell us the story of how you quit and what worked for you.  We have people who are just starting the journey, some who are still trying & some who are a ways out like me (7 years).  We're always looking for good new tips.  

Bosum - I don't agree with your relative.  I had no problem staying on various diets or stop eating anytime - but the smokes were a royal B**ch. 

don't know about muscle atrophy -certainly hope not - thought nueropathy was more about nerve ending damage. Tho i definitely feel it also in my legs sometimes - i've been getting those shin splints at night and legs take some getting going in the morning...Onc says the Arimidex doesn't make it worse but i'm not so sure.

My Onc had said if you have it over a year it might be permanent - but I have read that sometimes it takes more than a year to dissipate 

BosumBlues, did yours start during or after chemo?

I am glad to know that somebody else describes there legs as feeling like jello.  Mine usually happen when I am tired and been on them to much the day before.  I loose my balance often and feel like sometimes I look like a drunk walking.  I have wondered about muscle atropphy this week in my feet.  They feel funny and the never ending cramps seem to be pulling the muscles...I don't know how to explain that.  I will say that to bend my toes feels like my foot is pulling apart at the arch.  I can only moved two of the toes and the middle one slightly.   I don't look for improvement since next Feb will be 5 years.  

I have neuropathy in my hands and feet but I also have another weird symptom. As soon as I start getting a little on the warm side, like I'm going to start sweating, I feel like I've put on a needle shirt. Pins and needles all over my upper body and down my legs. Very annoying. As soon as I can get cooled off the pain goes away. My MO tried to tell me that it was hot flashes but I don't think so. My hot flashes 6 years ago didn't feel anything like this. It is like my sweat glands get fired up and produce pain. Anyone else have this? 

GraceB, yes, I have that too!!!   My neuropathy was bad enough that I only had 2 taxols (thanks in large part to everyone sharing their experiences here I knew to take my dr up in it when she offered me the option to quit - so thank you, best wishes for all who are continuing to heal/and my thoughts are with those who have this as a permanent problem and I sincerely hope they can figure this out - who will get it and how to fix it - and soon).  Although all the poor sensation / stumbling / dropping things has gone away for me I do have that super weird pins and needles with heat (I actually posted more details about it the other day under the hormonal section under "stinging skin on tamoxifen?") and heel pain if I walk too much.  It makes me wonder if the skin is maybe a holdover from my neuropathy instead of the tamoxifen?  I did have shooting pains all over for days after each of my treatments, that then settled into my hands and feet for a while.  Or maybe it's a combo of the two?  It did seem to get a little better on my 2 week break from my anti-hormonals, but maybe my exposures to heat were just different that week.  Regardless, it does make choosing/ timing activities in the summer difficult.  I wasn't really able to do much of anything outdoors before 5pm any day this past summer because it's really too uncomfortable for me to ignore when it comes up, I literally feel like I want to crawl out of my skin.  

Bosum - yes still taking 1000 mcg of B-12, but my PCP wants me to switch to a B complex.  However I'm 9 months from last chemo and I can't really say that any supplements seem to have made much difference in the lack of feeling.  But then I don't know "what might have been" w/o them.

How far are you PFC?  Distance out from chemo is what helped my wobbley legs.  I did go to a couple of PT sessions & they gave me some exercises. Also I did water aerobics this summer.  Both helped with my balance some (as long as I don't close my eyes in the shower).  Or maybe I've just learned to compensate.  Like you I'm fortunate not to have much pain but my feet are still like numb blocks of ice.  My fingers seem to have a little more feeling so I have hope, but the process is infinitesimal.  At least I can do up the zippers on my pants now - LOL.

Can you get a referral for PT?

I agree, a bit of research turns up some nifty balanced exercises.  pal at the gym this morning said someone had suggesting standing on one of those small inflated donut things , I forget what it is called but it is blue!  anyway, she stands on it while brushing her teeth in the morning!  wish I could remember the name of it but plan on buying one soon!

Been having some days better than others.  A year ago, when it all began, I was at or over 50% numbness and balance seemed off a little and I had cold/crushing discomfort.  Used to think righty was my "bad" foot, but it has mostly evened out and they are both around 20% numbness now, just different areas.  Balance back to normal and my foot pain now usually comes from fibromyalgia (which I had previous to chemo.)

Because I am not totally numb, my brain has been doing a good job working with whatever nerves are left or those that have returned.  I can feel textures with my feet!  Even in the early months, I had some sensation of that.  I know I mentioned liking to wedge my feet into my soothing micro fiber sofa.  Lately, I can also feel silky things on my feet and that used to feel like nothing before.  Still am not good at detecting water temperature.

So far, I have not had a single day where I did not think about this neuropathy.  It's there constantly.  I hope to keep improving and hopefully my permanent neuropathy gets to the point where I can have a day where it doesn't enter my mind.  I am at that point now where I don't think about cancer daily, but the feet are a constant reminder of the awful treatment for the awful cancer.  All I want to do is move on.  Quit holding me back, feet!