Vent about Permanent Neuropathy

Bosum - 4" stilettos? Wow. Bright red? Peep toes? Oh shoe envy!! I haven't even tried to wear "kitten" heels. In fact I haven't worn leather shoes. Just my SAS nubuck sandals & Easy Spirit Traveltime clogs - oh and tennis shoes a couple of times & my Sperry Docksiders. I feel so much "safer" in rubber sole shoes for some reason. I did a first pass on the shoes in the closet earlier this year but wasn't nearly ruthless enough, believing that my feet would get at least some better. We'll see.

pretty sure Lyrica has been advertised for about a half a dozen different ailments over the years...at least Neuropathy is getting some attention - even if only the diabetic kind - they need to find something to provide relief! & not just a disguised anti-depressant - otherwise we might as well just be on the "natural" cure 24-7

Probably a dumb question, but has anyone w/CIPN tried "drunken raisins"? I know people who have had success w/this concoction and arthritis pain.

Hi everybody,

I've been stalking this thread again but haven't contributed in forever..... I am almost two years out from chemo, and my neuropathy seems to have gotten SLIGHTLY better. My hands aren't an issue so much anymore...I don't drop things, I can get myself dressed and button my clothes, etc. However my feet- that's another story. When I am laying still they feel like normal feet, but the second I move I am reminded that no, I have completely numb feet. My right one is a lot worse than my left.... my left has gotten about 50-60% better. I don't have pain except for the occasional "zingers" of pain through my feet, which I hope is my nerves coming back to life... but I am not so sure. I have a hard time balancing when getting dressed...I have to hold on to something or sit down or I fall right over. Also - STRESS definitely makes it worse! Someone else said that and I totally agree. Anytime I have a little stress (I have three teenagers, an ex husband, and a fairly demanding job, so that happens quite often) it totally gets worse. I need to keep a journal because I think they are also affected by sugar and caffeine sometimes... and maybe by alcohol? They are definitely better when I am active... we just got back from 10 days in Hawaii and I was on the move a lot, and hardly noticed them. Now back in Denver - cold - and that makes it worse. I have found that massage really helps...I try to get a foot massage/reflexology about once a week. I found a place that is cheap. 

I have never heard of Drunken Raisins.... but I would love to know what they are....

I should add that I am Stage IV, and HER2 positive, and was on Herceptin every three weeks until about 3 months ago.I had other side effects that I was attributing to Herceptin so I have been on a Herceptin "vacation" since about mid September, and I have noticed improvement since then. I had a PET scan in November and am still NED, so as long as that continues, I am going to stay off the Herceptin. I realize some people may think I am stupid, but I had to make a quality of life call.

Thats my two cents!

XO

Andi

Yeah! I tried those drunken raisins, they were awfully foul tasting! But I never really cared for gin, anyway.

notbuyingit , yes! I am so glad you found topricin! I love it! I wish I had a vat full to climb into! I sent my mom some too, cause she has very messed up arthritic feet, and she loves it! I buy it cheaper on amazon. I tell everyone about it! I have been using it for a year now, and the relief is almost instant for me. my manfriend thinks it is woo, but he won't let me put some on him,and the amount he uses is so small,no wonder!

Andi67, I have your style of CIPN too, down to my right being a bit worse. Also have the feeling of normal feet, when they are still and not touching anything. Also, my feet loved going to the beach. I will add that getting poor sleep seems to contribute to my "bad days" of CIPN, along with stress. Haven't noticed food triggers yet, but will be paying attention.

Thanks tomboy!

I'm gonna try it this week!

Bosum, yeah those dang colonoscopies are no fun and easy to make excuses for delaying, glad yours is over and the nasties removed.

I like your yoga teacher! visualization is a big help to me

I should do it again, I used to do massage but stopped when I got an allergic reaction to the cream she used and have not really done much since (I tried taking my own lotion and the massage lady was sort of pissy~~)

will need to do the reiki again

well I switched up my diet at the time of diagnosis, sorry but I found kale to be a great source of vitamins but I also do lots of dark greens and beans.  No red meat and lots of fish

can not tell you if it has helped but feel it sure did not hurt and good for all sorts of health issues

Eli - thanks for your post. I can't begin to give percentages but I'm seeing a miniscule improvement. 14 months post final chemo, 4 months post Herceptin, 18 months post ALND surgery, 11 months post rads

Fingers still numb on the ends. I can now sort of pick up coins. That's the best news since I was finally able to do the zipper up on my own pants. I'm working with an occupational therapist for my fingers - using Theraplast Putty, doing exercises with super large clothes pins of various tension strengths, trying to sew a silly felt bird (oops). She told me to play dominoes every day. (yeah sure...)

The balls of my feet are still numb & the numbness still goes up my calf to the sock line, but like Eli, I can occasionally feel more in some of my toes. Working with a physical therapist to regain some balance, muscle strength, stamina. I'm getting cramps in my arch so something's happening. Interesting that my right foot & hand both seem to be in worse shape than my left. That's also the side that lost a big toe nail, and my dominant side. And i can balance better on my left foot. I wonder if the poisons moved more quickly to my extremities on that dominant right side since the blood flow was originally better? It's also where I had the ALND surgery & the radiation, so possible more nerves were damaged by surgery & rads in addition to CIPN?

Sometimes I'm not sure if I want more feeling. What if that means pain, which has been absent so far?

I agree - the cold is a problem. I have a heated throw since my hands and feet are cold when it's 75 degrees in my house. My son gave me Heatable Hot Boots shippers for Christmas. Lovely shaggy soft things. The soles have something like buckwheat pellets infused w/lavender & you toss them in the microwave to warm. Great to wear at the computer, or as long as you don't have to walk

Hope everyone else is doing OK.

Hi Ladies,

Yes, it's been awhile since someone posted on here.

My update is that I still feel numbness on the balls of my feet too. I am also still feeling the numbness around my face a bit. I did get slightly better. The tips of my fingers are very slightly numb. Interesting, I went to my new internal doctor yesterday (since my former one retired). She gave my husband and I a whole bunch of test. One test included a test for nerve damage. You put your hands and your bare feet on this mirrored type plate and it measures nerve damage. The scale goes from 1 to 6 with 1 being no nerve damage. My hands measured a 1 and my feet measured a 6. She told me to take 50mgs of vitamin B6. She said it helps repair nerve damage. I took vitamin B6 all during my chemo and was told by my MO that I was able to stop when the chemo stopped. Well, needless to say, I'm going to start today with 50 mgs of B6 to see if it helps it along. I don't have any nerve pain, just numbess.

I do believe as time goes on and we get further and further away from chemo, things will get better.

Stay warm!

Marie

I would not question it being the prednisone but your antibiotic. Which one were you put on. The group that Cipro, Avelox, and Levaquin..... which is known as Quinolone there is the possibility of nerve damage.

Avelox, did make my neuropathy worse. They didn't add the warnings for that until it was too late for me.

Bosum - how GREAT that you've found a doc who listens and is doing follow-up tests. So do we hope for herniated discs? Ugh - but at least you'll know. I read a research paper, I think out of Stanford Univ?, anyway this doc had done a study about lymphadema education among physicians. Over 80% said they had around 15 minutes in a lecture some time in their 5-15 years of medical education. Anyway, I think the same holds true for CIPN. It's not supposed to happen usually, so.....

There are quite a few of us who watch this thread so you're unlikely to have a post dangling out there. I try to follow Eli's example and estimate progress to post periodically - but venting is good too. And most so us are interested in what's going on with others in a similar situation. Please let us know what the tests discover.