Vent about Permanent Neuropathy

just joining this thread & reading over the posts...have nueropathy in both feet - toes mostly & the balls sometimes - gets worse when i'm on my feet a lot - affects my walking - which affects my bad knees - which affects my lower back/hips...no bueno

no i was not even aware of this SE with chemo - yes it didn't get bad til after I was done - yes my Onc just tells me it will hopefully go away with absolutely no advice on how to make this happen

no i do not want to take anymore drugs aka Lyrica, Cymbalta etc. - yes i have tried acupuncture with no success - vibration (tho admittedly not consistently) i wiggle my toes - rotate my feet - take all the supplements that supposedly help - lotions ( i like Aspercreme & Blue Aloe w/lidocane which is actually for sunburn) 

tonight i tried a hot/cold shocker treatment they say doing that in your shower gets the circulation going, so why not? alternated between a tub of a little ice water & my microwaveable heat pad - except for the initial shock of the water - my feet feel pretty damn good - so i will try it again tomorrow.

have to ask pip57: is "Mary jane" an actually friend? or a little somethin somethin to ease the pain? 

totally  agree that they should have come up with a better "cure" by now with little or no SE's - somebody's making money somewhere...now they are done with us & back into the world they throw us - trying to go back to our old lives with all theses complications & no guarantees for the future

breast cancer survivor? breast cancer cure survivor - keep your pink ribbons

sorry, ladies, reading these posts got me going!

Yes, Mary Jane is the "friend" that helps with the pain.  There is a study out now showing that it helps neuropathy.   My GP is all for it too.  

bottomlinepublications.com is one of the resources.  You can google others.  

Arnica gel helps too, sometimes.  

vent here....I am really tired of this pain. My oncologist said it can't be from chemo because I only had one dose but the timing is interesting.  The bottoms of my heals burn and the tops of my feet really hurt and are a bit puffy.  My shins also hurt but that might be from walking funny.  Argghhhh

I tried this homeopathic mix for horses..it helps

Equilite, Sore-No-More Gelotion Herbal Liniment

pip, is that by smoking or some other method?  Must try

Vaporizer.  It was the recommended delivery in that study.  

Ok, joining the vent! I am really getting sick of this pain. My feet and lower legs hurt all the time. It has been really getting progressively worse this year. I am stiff, have weakness in getting up, I have to use my upper arms to help push off something, and when I go up stairs I use the railing and practically pull myself up the stairs. I suspect it is the arimidex or whatever it is I am taking! Curious about Mary Jane, and if she would really help!

I had to go back and take a look at my post from last month...Yep, I think my feet have improved another tiny bit.  I would say that now (10 mos. PFC,) that righty might be ~25% numb and lefty about ~35% numb.  That's down ~5% since last month.

Lately, what the numb feeling feels like is as if I was walking on inch thick callouses.  It is like I have some feeling underneath it all, but there is kind of a dead zone between the surface I am in contact with and what is feeling anything.  This is in the balls of my feet and in the toes.  The toes seem to be s.l.o.w.l.y coming around, all except that left big toe.  Another thing that is different is that I sometimes get a little burning in those areas.  I try to be hopeful and think it might be the nerves coming back to life.

Haven't tried vaporizing any herbal remedies.  My condition is not so much painful as it is numb.  I'm just kind of riding it out and still trying to keep good circulation going in my feet to promote any healing that I can.

Finally, I would really like the day to come when kmmd can write me a post that says, "elimar, this thread is for permanent neuropathy and since yours has gone away, it is not for you."  If that does actually happen, I will be a good case study of how long nerve recovery can take.  I take heart because several have reported that there can still be improvement, even after two years and more, so the hope is not unfounded.

septembersong,  You do sound like me because, unlike some women on this thread, we both seem to be able to walk o.k. and no major balance issues.  (I did feel off-balance slightly the first couple of months, better now--can stand on one foot with eyes closed without falling over in a second now.)  Are your hand alright?  Mine are.  I know what you mean that, while exercise feels good, then afterward you feel like you overused them and they are achy.  I used to get that more, still get it a little, but overall my feet like to "work out."

I can't really comment on the pain that some feel, but that compounded lotion sounded promising, or the medicinal herb.  What I write is primarily about my NUMB FEET.  I wrote some post of all that I did which helped, but this thread is long so I will just list some stuff again:

--I had Anodyne (far-infrared) therapy 6x during the first couple more painful mos.  Not sure it did anything, but I did become less painful after those first few mos.  The PT where I did that gave me a few balance exercises, but the improvement on that came when I got a little more feeling in my feet.  Nothing to do with those exercises.

--Massage lotion into feet.  This was good after I walked, biked, did jumping jacks, whatever.  It is just soothing  Still do this.

--Initially I had a cold, crushing feeling in feet, so my feet always like a warm soak in a tub.  Got the foot circulation going, so my feet liked it.

--Walking, biking, moving feet.  I was constantly rolling my ankles and flexing my toes.  I just had a compulsive urge to do this, like I could force my feet to feel something.  Again, it never hurt me to do this, and I just figured I needed good blood flow to do any healing.

--I used to make my husband massage my feet those first months too.  Then, I got a hand-held back massager and used that on my feet.  It felt weird doing it but seemed to get the blood circulating.  Afterward, it would sometimes feel a bit more uncomfortable but also seemed to have a bit more feeling.  I still use it when my feet feel most lead-like.

--I took B-12 and B-6 more or less over the first six mos.  Seemed to help a little.  I don't take either regularly now, just a multi-vit.. 

I don't know, I just did stuff to get the circulation going or else to feel soothing.  That's about it.  No special foot magic.  

Honestly, I think time is going to be the big healer (or not.)  I'm not young, but younger than some here.  I don't have co-existing medical conditions.  Those two things are in my favor as far as healing goes, but nerves are real slowpokes.  Right now, I still cannot tell if I can get all the way healed or not.

[My therapy this month is going to be viewing lots of World Cup soccer games on t.v..  Since I try to update my foot status once a month, I'll have to let you know how that worked out next month.]

I no longer get the weird crawling feeling on the bottom of my feet but I still feel it on the tops, toes and ankles.  Of course, when you add this to achy bones and legs I now have as a SE of Boniva, there are some days when I do not know whether I can walk down the stairs.  My big toes sometimes hurt under the nails but I do not know if this is neuropathy or the nails trying to come off (another  SE of the chemo)  or a SE of the Boniva.

Ain't this fun 

I wear hiking sandals. Works for me

Wish I could wear them the time

I wear The North Face sandals. All three straps are adjustable.