Vent about Permanent Neuropathy

pip57

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.  

ktym

oh notbuyingit, that is the nicest thing I can think of for that pink ribbon on the days my feet really hurt and tonight is one of them 

pip57

Arnica gel helps too, sometimes.  

MomMom

ladies, At a BC support group meeting last night, a lady who

suffers horribly from neuropathy (was crying in pain on her couch days before), heard from friend of friend that compression stockings work. 

She ordered from some foot care catalog. order 2 because not a pair.she didn't know that and for one day she alternated and felt no pain. of course she ordered another. Hers was white, and looked more like a long kneesock. it just covered her knee at the top and thru ball of her foot at bottom. The BC PA there had never heard of compression working but seemed excited about it and is checking out. of course check with your docs first or LE nurse before you try. Hope someone finds info helpful.sorry for lousy typing doing this in case on way to chemo.

elog.

Unknown

i think i have some that i bought one time trying to cure some ailment or other...i will try them - maybe one & see if i notice a difference

socallisa

I tried this homeopathic mix for horses..it helps

Equilite, Sore-No-More Gelotion Herbal Liniment

pip57

I am now 6 days pain free after one visit with Mary Jane.  I didn't really believe the study when it actually said it only takes 2 or 3 "visits" for 6 weeks relief.  I am becoming a believer now. 

KittyDog

I wore prescription compression for my LE Legs...they did nothing for my feet.  If they helped her that's great.  

pip57

Vaporizer.  It was the recommended delivery in that study.  

hopefortomorrow

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!

pip57

Did you check out the study?

elimar

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

Hi elimar, 

What you describe is almost exactly how my feet feel. (I'm sorry we have this in common.) Can you tell me what you're doing that's helped? The more active I am (exercising) and the longer I'm on my feet, the more loudly they complain. I try to keep a positive attitude, but this is such a life-altering SE. No pain, but still. I am so glad for the women on this thread, who have no problem understanding what this is like. 

Thanks for whatever you can share. 

Ann

elimar

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.]

socallisa

As I'm writing this I am at my youngest son's 40 th birthday. Sitting with my feet up. I just can't get up to socialize. 13 years of this neuropathy is really getting old.  Sorry had to vent! 

ktym

I'm starting to think I need to visit Colorado.  "take in the air"  Isn't that what they used to say?

I don't tolerate compression on my feet, but, I think the one thing we all find is some things work for some of us but not all of us and we're just happy putting things out there for people to try so MomMom hopefully it works for you let us know. 

KittyDog

Right after chemo I bought a good pair of SAS sandals.  I couldn't walk in them 4 years ago because of my balance issues and they felt like lead weights on my feet.  I haven't even tried them again until yesterday.  I wore them to Church and on to my mom's.  Man I still can't wear them.  I can walk in them so that tells me my balance issues have improved and I gain some strength back because they didn't feel like weights on my feet.  However by the time we got back from supper I was almost in tears because the bottom of my feet burned so bad.  I don't know if it because they are leather and it made my feet hot.  Anyway back to my bright pink crocs.  I guess I am stuck with them.

GwennyMD

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 

Minicpearl

I'm on my 8th year dealing with neuropathy, so very happy to have stumbled (ha) on this thread!

My oncologist said it would pass, then when it didn't, didn't know what else to do. He gave me cymbalta and hydro condone, and I functioned ok with that, at least could work part time!

I've moved states since, new insurance won't cover cymbalta! My PCP took me off hydro condone last year, she didn't think it necessary. Only result of this is I'm not able to do much outside the house. Gabapentin makes me way too dumb to feed myself, lyrica helps with the burning, but not the pain for me. 

So, have searched for help and after one specialist saying it's arthritis (with no X-ray) and another not knowing chemo could cause neuropathy, I  found a podiatrist who actually said if it was legal here, he'd prescribe Mary Jane. And this week, New York made it legal, so, hopefully in the next few years I can get some. This doc is also looking for other treatment ideas. Feels so good to find someone who listens, and didn't just shrug me off.

Shoes are tough for me too. I can't stand anything heavy and need all the support I can get. A shoe specialist suggested I try kalso earth shoes, and they help a lot! My sneakers weigh less than 6 oz and are so comfy.

socallisa

I wear hiking sandals. Works for me

Wish I could wear them the time

minustwo

Thanks for the shoe recommends.  I'll look at the Earth Shoes.  Lisa, are you wearing Teva hiking sandals?  

I've been wearing Easy Spirit TravelTime to protect my big toe nails which are trying to grow back from Taxotere damage.  They could be lighter.  I've just started wearing my old SAS slip on "clog" type sandals.  Easier on the feet but no protection for the toes.  I was raised in CA & rarely ever wore shoes.  So now I feel really stupid wearing socks all the time, especially w/sandals.

The most difficult was finding water shoes to wear for water aerobics.  Everything rubs on my toes if I don't wear thick socks.  No good for the pool.  I finally got some gel "toe protectors" from REI so I can just about stand an hour of exercise.

socallisa

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

minustwo

Thanks Lisa.  I'll check them out.

lovewins

I haven't been posting on BCO but I have been lurking though.  Just need to vent a little about my neuropathy.  It seems like since I had my pedicure my feet hurt more.  It seems like a million bees are sting the bottoms of my feet, especially my big toes.  At times I think it is getting better, I don't know for sure.  Maybe the pain is more intense because the nerves are  healing?  I have worn sandals a couple of times because my toes look so pretty .  I hope you all are doing well.

yensmiles

hi all, chanced upon this thread while i was searching to see what topics are around..

there is this herbal concoction (chinese origin, well-tested and used by Japanese) called Goshajinkigan. It is proven to reduce severity and occurence of neuropathy in those on taxotere. Traditionally, it is also used for rheumatism and a host of other problems.. while ideally used concurrently with chemo, for those who are being troubled by neuropathy, maybe you can try getting it from Japan (the company making it for research and sale at pharmacies is called Tsumura & Co). Alternatively, drop by the nearest chinatown (with a printout of the 10 different herbal names in chinese) and ask the Chinese Medical Halls if they have it. That's how i managed to get my supply, after realising that i won't be going to Japan anytime soon. The printout is crucial as some health practitioners know the formula, but some don't and with the herbs.. it's like prescription, if they have the raw ingredients, they'd pack it for you. Don't bother with scientific names of the plants, just bring pictures and chinese words. ( http://kampo.ca/herbs-formula/wp-content/uploads/2010/10/Goshajinkigan-21.jpg ) Thankfully, i now know of two places to get the formula where i am, though it is back to basics, boil it on slow heat for a couple of hours for the nutrients.

http://www.ncbi.nlm.nih.gov/pubmed/24377531

all the best, and hope full sensation returns to all who are experiencing neuropathy.

ktym

lovewins I hope things are calming down

yensmiles, that is an interesting study thanks for passing that on

socallisa

I have this herbal liniment gel

with Arnica, Rosemary, Lavender,Lobelia and Xanthum Gum

Unknown

pedicure did not bother me & my feet prefer when i don't wear shoes at all

daughter's wedding Saturday - bought shoes with just the slightest wedge heel - hope i make it through pictures & the ceremony with them on! who's that one there with the crop top hair & the barefeet?? the MOB of course!!

ktym

Notbuyingit, that was a picture, made me laugh.  It took me some time to find just a tiny wedge and shoes that worked form DS's wedding too.  Luckily they got me through.  I think that night was the first time post diagnosis that I realized I could be happy again.  I loved every minute of it.  I wish I'd caught your post before the wedding.  I hope you're out there now and the neuropathy is leaving you alone tonight and you're dancing and they're getting pictures and you have a night of completely forgetting about breast cancer.  I wish you a night of joy and your daughter and new son a lifetime of happiness

lovewins

Thanks kmmd....my MO nurse told me while I was having my Herceptin treatment that I should tell my MO that my feet still hurt from neuropathy from my chemo in December and ask him about pain medication.  I asked if it had a lot of side effects and she said no but I don't believe her.  I am very apprehensive about taking anymore medication because I am on so much now.  Way off the subject I am gaining so much weight from the Tamoxifen  that it is driving me crazy!  That can't be good for my poor feet either!  I also have a numbness on the surface of my face...I asked my nurse about that because I was worried about a brain tumor and she agreed with me that it is neuropathy and I am noticing it more now because I feel better.  I am doing pretty darn good but I tell ya Cancer...well I guess I don't have to cuz you all already know...can drive a person crazy!  Anyway thank for letting me vent....Hope you are all having a nice Holiday.