Vent about Permanent Neuropathy

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

Notbuyingit

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.

ktym

OMG I gained weight on the Tamox like no tomorrow.  I'm still painfully taking it off oh so slowly.  You're right it doesn't help the pain either.  I used to get so mad when people would say the Tamox study showed placebo gained as much weight as control group it is all in your head.  Well later smaller studies showed weight gain on Tamox especially for us premenopausal groups.  Then my MO finally admitted yes people gain weight on it. 

Notbuyingit

kmmd, i did have a great time & looked pretty damn good considering lol! my DH did spill his champagne down the front of my dress but i didn't let it stop me! when we were standing in line for the photo booth the groom's dad was in front of us - he said "do you want to go first, should you be standing this long?" what???? watch me on the dance floor, Grampa!! hahaha! was good times

sooo not my Onc but my surgeon recommended Gabapentin - what do we think of it??? "thoughts of suicide" sounds like scary stuff...anyone on it?

SoCalLisa

I started neurontin . It starts with one pill at night then increases..by the time it worked for me I was sleepy so they switched me to Lyrica and it worked for me..the docs have to start you on something less expensive then if that doesn't work go expensive like lyrica..

I haven't had many side effects at all except for neuropathy pain relief

proudtospin

I did Neurontin or gaba whatever a while back for some leg pains that turned out to be caused by the dang statin I was taking.  Did nothing for the pain, made me way sleepy and stupid.  think I tossed a bunch of the pills,. I changed statins and pain disappeared over night!

it is a strange pill and some folks wind up taking huge quantities

KittyDog

I did not like lyrica.  It made me foggy headed.  Honestly didn't think it helped the pain either.  Neurontin worked the best but it too had SE that made me quit.  Thankfully we are having a cooler summer than normal so it hasn't been a bad on my burning feet.  Everybody is different.  My DH has no problem with Lyrica and he takes it three times a day.  I was only on it once a day.

elimar86861

Guess I'll pop back in for my monthly update.  I can't report any improvement.  In fact, my feet had felt worse lately, even achey.  Not sure if this is all CIPN, or if it is my FM on top of my CIPN???  Anyway, I had run out of my B-complex vitamins a while back and decided to get back on them.  After a couple days back on B Vits, I did seem to get back to the numbness without too much additional bad feeling.  For me, Vit. B maintenance seems necessary.

Still at about 25% numbness for lefty, 35% numbness for right.

That's plenty of feeling to really feel it when I stub a toe!

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I only tried gabapentin for my FM.  Not for me.  Since the lowest starter doses gave me insomnia, made me feel irritated (I mean irked!) all the time, and didn't change my pain in any way, I could never keep on to reach the therapeutic dosage.  Because it does work well for some, it is worth trying.                                          

                                                                 

                                                                              

Notbuyingit

not good news, elimar since i already have insomnia & am almost always "irked" 

haven't tried it yet - getting over a sinus infection...

pip57

I still think 'natural herbs' are kicking my neuropathy pain in the butt!   

ktym

Notbuyingit, so happy to hear that!  gabapentin didn't help me but it does help some, might be worth the try.  Worked great for my hot flashes, I went off it due to weight gain.  I might have put up with it for neuropathy relief but not hotflashes.  

pip57, I'm so keeping your natural herbs in mind

SoCalLisa

It's amazing how so many different things work for some people .It just goes to show how different our bodies really are. 

Notbuyingit

still haven't tried the Gabapentin...my feet are not as painful since i started the swimming - just the constant numbness which i am just getting used to, i think

i was using Vix vapor rub for my sinus infection & the other night tried it on my toes actually felt pretty good - i think i will look for cream with camphor - otherwise the sunburn relief aloe w/lidocaine is still my fav @ nite - makes my feet kinda slippery in the shower tho lol

pip, i am ready for a beach, sand chair, & "natural herbs" ( my retirement plan)

SoCalLisa

I have some Lidocaine Ointment..more for the mouth I think but it helps...it comes in a jar and my PCP gave me an RX for it

proudtospin

well I am a huge fan of my pool and swim 4 to 5 days a week.  But gonna look for something for the days like yesterday, when I went shopping for a bit and then paid for it in the foot pain

I found an ad for someone  in NJ (where I live) who is a chiropractor and claims to work with patients with neuropathy.  Thing is, he initially was a Communications major~~then went to school for chiro

Gonna see if I can learn something more of him, he seems to believe in nutritional suppliments

lovewins

Last night I got my 2nd pedicure.  It was still very uncomfortable...I think this person was rougher and she did not understand English very well when I asked her to be gentle.  Anyway...this time I got the mud mask and hot rock and parafin wax.  The mud felt so good but the wax had my feet screaming!  Later on and today my feet feel better.  I am hoping and visualizing that these pedicures heal my neuropathy.  I think my feet really do feel better today.

pip57

Everythings better at the beach.

proudtospin

ooo, if you think the pedicures cure the neuropathy, let me know!  would be lovely if it did

Notbuyingit

lol Pip! 

Lovewins, what kind of fancy pedicures do you get, girl?  the ones i've had include some leg massage  - but no hot rocks or wax. When i told the girl about my nueropathy she did say they have a more intense massage treatment..for an additional fee, of course. But i would also much prefer pedicures to be the answer instead of meds! i'll see if i can pitch that to the DH 

lovewins

NBI....They have all different kinds where I go.  They even have more stuff they do.  I did a little reading and massage can improve Neuropathy in some cases.  I had more done this time than last time and I think it stimulates the nerves.  My friend got into a bad motorcycle accident and she said part of her therapy was to desensitize the skin.  I feel like a have a tiny bit more feeling in my feet today.  I will keep track here if I make progress or not.  I am also visualizing my feet pain free.  It can't hurt right????  At least my feet will be pretty.

Notbuyingit

sounds awesome! and i'm sure it will help! every night as i lotion on whatever I am currently trying - i top it off with some dry skin lotion & figure at least my feet will be soft! 

sometimes i think they are better - sometimes i think i am just getting used to it...

elimar86861

Any change to my numbness is happening at a snail's pace, but I do like walking barefoot on different surfaces (like sidewalk and grass and sand and carpet) because, although I can't feel them normally, they do seem to stimulate my feet in a good way.

I have enough feeling that I can walk safely without shoes.  

lovewins

I am still thinking this last pedicure caused my neuropathy to improve a tiny bit.  I tell you it was extremely uncomfortable when she was clipping and trimming and rubbing a towel over my feet.  Almost made me jump out of my chair...but I am sticking with it.  I ordered some cream from Etsy for temporary relief.  The neurpathy I had in my hand is 80% gone.  I am telling myself it is because I am typing all day and using my hands. 

I also enjoy walking around barebare on different surfaces....the mat we have going in the back door...not so much!

MinusTwo

I agree with Eli's "snail's pace".  I have a little more feeling in toes 2 & 3, but the ball of my foot is still absolutely dead.  It feels dangerous to step into the shower.  I wear clunky sandals w/socks since those are more comfortable for my big toenails that are still coming off.  But I don't go barefoot outside my bedroom.  Sigh - this is the 'girl' who NEVER wore shoes for 65 years unless forced.  My fingers are still mostly numb & the tips often feel swollen, although I don't think they really are.   I hope someday I'll be able to thread a needle again, or pick up pennies.  I'm grateful not to have much pain.  In August it will be a year since Taxotere.

elimar86861

MinusTwo, Mid-August was my final chemo, so will have to post next month about how I am doing one year out.  I thought I had gotten off so lucky because I had very little CIPN last Aug.  It set in after the first week of Sept.  Every now and then I have a whisper of a tingle in my hands, but nothing really noticeable in them.  I really hope your hands come back further.  I think that would make me even more upset than I am now.