Vent about Permanent Neuropathy

proudtospin, That really says something!  It must have been more than a minor improvement for someone to have noticed and commented.  We don't even realize our s-l-o-o-o-o-w healing day to day, but then one day we look back and can say, "I am a bit better than _______ (last month, last Spring, last year.)  

Random CIPN story:  I really only had one harmful incident due to these feet.  Last Fall, I was numb to the point that when I went out for lunch, my foot fell asleep when I was sitting only, because of CIPN, I couldn't even tell it was asleep.  I went to stand and fell over into a wall, severely twisting and spraining my ankle (ligaments still twinge to this day.)  

Related:  The other night, my foot fell asleep when I was sitting cross-legged too long.  Only this time when I got up, I could tell it was asleep, so no injury.  The funny thing is that as the blood returned, I had none of that pins and needles feeling.  Still not enough nerves to feel that, I guess.

I was just fitted with a new foob by Amoena and I really like it.  However I tried a new one but I can't remember who made it that I really really loved but it wasn't being made in my size yet.  Light weight and felt so soft.  You could actually fold it in half.  Sure hope next time they have that one.

kmmd---yeah, the bouncing ball is crazy but helping me.  I meant that I had no hand eye coordination in the above...was a total failure at tennis or anything of that nature! 

I have been known to hit my toe against the wall, never feel it and only realize it when the toe turns black!  dumbo here

Marie:  If you page back through this thread you will see that most of us have had little improvement.  My neurologist said 70% get "better" w/in 2 years.  That usually won't mean ALL better but some better on a sliding scale.  "Lessen" is a positive word.  I'm one year out PFC.  Feet are numb & going up my calves.  Fingers are numb & I couldn't do up the zippers on my pants.  I refused to take any drugs for the time being since a) I wanted all the other poison out of my system so I could get a true reading, and b) although my feet are blocks of ice & I had balance problems, I didn't have much pain - just numb w/occasional tingling.  

One year down the road:  fingers still numb but a little better than they were.  I can sometimes pick up pennies from a flat surface now.  Some fingernails still lifting from the Herceptin and pseudamonas infection under the nails and I think (I hope) the pain I have in my fingers is from that and not neuropathy.  Feet are still numb but some tingling in some toes some times.  The balls of my feet feel like iron when they hit a bare floor, like walking on pure bone, but that is some feeling anyway.  I'm aware of the numbness going up my calves so maybe that means it is improving.  I don't think my balance is any better but I have compensated.  I walk like my Dad when he was 90 (ugh - not pretty).

My hat's off to all you ladies who have to live with constant pain. 

I took the gab thing for a time but thought it just made me sleepy

what benefit to you see in it?

Kmmd -

Thank you.  I figured so much, but it does help to hear it from someone on the forum.  I don't know if it's my imagination, but it seems to be slightly improved.  I had an appointment with my primary medical doctor today and he said I am on the very lowest dose of Lyrica 50 mgs 2x daily.  It's almost like nothing. He thinks I would benefit from a higher dose.  I'll wait 2 weeks when I see the Neurologist and see what he recommends.

Thank you again! 

Marie

I'm not taking any of the Neuropathy meds right now - or much of anything else except vitamins.  My goal is not to start taking anything new until I'm sure all the other poisons (oops, I mean blessings) are out of my system.  I'm ready for chocolate cake & red wine or pizza & beer, but I'll have to pass on the drinks for tonight since I had two margaritas at lunch.

I get it, a few months ago a pal invited me to dinner and proudly said she was making special steaks (think highly marbled~~) and I said gee I have not had a steak in 6 years since my diagnosis.  She was shocked but I never announced it, I just started to eat dif and steak, never been my thing anyway to the fatty thing was out.

She was shocked as her family eats few veggies (I eat tons of greens and my bfast this morning is whole grain bread, spread with yogurt, a kale leaf and a slice of apple!).

we just need to do what we can do, arthritis, yeah and really need my gym and pool!

off to bfast!

oh yeah, I am for the pizza and beer!  have not had that in a while and I live in NJ home of tons of pizza joints! 

hoping I would not have to post here

Question, or feedback ..... I have two treatments of 4. First time on day 5 after tx the bottom of both feet were in such pain.  I blamed it on neulesta

Yesterday same thing. But now in hands. No tingling. Just severe pain. Opening and closing hands hurts as do bottom of feet. Sound like neuropathy ?  

Tobycc...what you are experiencing is fairly typical for the taxatere chemos.   The pain also peaked around day 3 and 4 for me too. 

definitely call to report to your doc and do not sugar coat your reactions!   This from some one who had a reaction this week, at the docs office to a steroid shot given for sinus polyps.  They had me on O2 and were yelling for epi pens!  All was fine but side effects should not be ignored

yeah, I am still feeling just a tad weird and realize it is the dang steroid!  they make me want to jump through the walls!

thanks, not the first time for the steroid reaction, dang but docs do not warn you and I only found out to be careful by doing google

herb tea for me tonight. maybe my ginger tea~~

If your arm is actually limp, I would get that checked out.  However, I certainly get tingling and even some numbing of the arms off and on.

BB--sorry you are feeling so bad and have leg issues.  I understand it but luckily I have been able to retire at 65 and collect SS.  Although I live a pretty lean life to save money. 

I have found that when my arthritis or numbness starts that massaging my hands or feet, it helps!  I woke up with aches in my fingers but just massaged them for a time.  Have you tried that?

I tried looking for a part time job when I first left my regular job, but so much requires standing on the feet for a day and I only make it a couple of hours!