Vent about Permanent Neuropathy

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2014

    Minus, that sounds like the doc got a sales call for some pharm rep!  I have gotten stuff like that from the doc that I just left~~I could give you a list of meds.  Like you, I do not fill those sorts of things.

    Well my feet are feeling a tad better this morning, gave myself a foot massage last night and also do not take my statin.  Thinking though that a pedicure is on the list of things to do.  I have a massage set for tomorrow just because~~

  • ktym
    ktym Member Posts: 2,637
    edited August 2014

    Cold makes mine hurt worse so I cringed at the ice.  Then I read foot massage and ice cream and thought I read it wrong.  Then went back and saw, no it was foot massage and ice and the post about wait someone else read it wrong and then the post about that's a good idea, and by then I was laughing so hard .....

    So, did you end up with foot massage and ice or foot massage and ice cream?  

    OK, I have a drug name to pass on: zonisamide.  It has helped the pain a lot.  First one that has really.  My pain doc says he's used it a few times when other meds haven't worked.  It reminds me of the gabapentin in that it is usually used for seizures and you have to slowly go up on the dose and if you go off have to wean yourself off of it.  I'm not pain free, but I'm on my feet more than I used to be and they're keeping me awake from pain less at night -- I'll take it.  First relief I've had in years

  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2014

    km---well I went for massage last night on my tootsies and do think it helped. No ice as I followed the thoughts here.  Last night I did my own massage but did treat myself today to a massage from real gal

    feet are feeling better, I keep an extra comforter on the end of my bed so it covers my feet and seems to help there

    also stopped the Lipitor and planning a conversation with doc on next visit

    dang all this junk!

    no ice cream, big glass of wine!

  • ktym
    ktym Member Posts: 2,637
    edited August 2014

    proudtospin, sounds like a good prescription to me!

  • Notbuyingit
    Notbuyingit Member Posts: 1,035
    edited August 2014

    just for the record, i did try filling a dishpan with a little water & ice cubes & alternating my feet (couldn't take more than one at a time) it did seem to make them feel better for a bit - but ice cream is a lot less work....and so...

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited August 2014

    You must have a big foot.  Winking  (Or a small dishpan.)  Ahahaha! 

  • Notbuyingit
    Notbuyingit Member Posts: 1,035
    edited August 2014

    lol! i meant the icing ! 

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited August 2014

    LOL!  I have big feet, so it was natural interpretation for me!  

  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2014

    I may need to do an ice cream run, did a bunch of walking today, massaged the feet, bit better but ice cream would be better

  • Notbuyingit
    Notbuyingit Member Posts: 1,035
    edited August 2014

    girls, i think we found the cure! laughter & ice cream all around!!

  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2014

    works for me!  massaging my own feet does seem to help so now, it will be part of my after workout routine! wonder if the snack bar has ice cream?

  • PeggySull
    PeggySull Member Posts: 686
    edited August 2014

    hi, I have now had two acupuncture sessions for my neuropathy.  My main symptom is total numbness in my toes and the balls of my feet.  After the first session I had a little more feeling in my toes, small but noticeable.  After the second treatment the reduction of numbness. In the toes begain to move into that area between th toes and the pads of the feet.  So I am hopeful.

    Another thing though is the immense relaxation response I experienced, particularly during the second session.  The acupuncturist is not only placing needles in my feet but on the spots connected with optimal nervous system functioning.   Whatever he did, I felt like I was sort of floating during the session.  I really didn't want it to end!

    I have another session this Thursday so I will see if this produces any further results.

    Hugs,

    Peggy

  • pip57
    pip57 Member Posts: 12,401
    edited August 2014

    Acupuncture worked wonders for me.  

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited August 2014

    I still have not looked into accupuncturists for CIPN.  The last one I went to was such a quack.  He did a Dx thing that he called "pulses," to identify various ailments.  Funny, he never detected cancer but instead told me I could be pre-ALS.  As in ALS--the degenerative disease that you die from.  What an irresponsible thing to say.  Here it is a couple years later and I sure do not have it.  Guy has a whole decent-sized new-age practice too.  What a money-grubbing phony.  I am sure there are honest ones out there, but I am skittish about the process of trying to find one.

    My update this month is that I might have made a tiny improvement, with lefty at 20% numb and righty at 30% numb.  BUT THAT IS ONLY ON A GOOD DAY.  Some days I feel like it is still at 25%/35% like it was two months ago.  Lefty has more area of numbness but less intensity; righty is really just numb in the ball and toes, but the big toe is the numbest of all areas affected.  I may have reached a plateau, or else I am stuck here for the rest of my life.

    Will be reporting all this to MO at the end of the month.  They don't care.  I feel like quizzing them to see if there is even a note in my chart from last time.  (Can you tell I am very disgruntled about my CIPN at this point?)

  • Notbuyingit
    Notbuyingit Member Posts: 1,035
    edited August 2014

    I had three sessions of acupuncture & did not get relief - tho It could very well depend on who you go to - I found I couldn't really relax during the sessions - in fact the opposite - i felt tense. I did feel better in general afterward - but not my feet. She also was doing a pretty intense massage to my toes which actually kind of hurt - maybe because i have arthritis as well? the last session i asked her to skip the massage - she said she would take a different approach & put more needles in my back...

    i am sooo tired of the foot pain - i feel it is traveling up my left leg as well...I have started the Gabapentin - how long be4 I can tell if it's working??

  • ktym
    ktym Member Posts: 2,637
    edited August 2014

    elimar, what? ALS, where on earth would that have come into his differential, I don't get that at all.  

    We're on a warm stretch here but at least my feet aren't as cold at night so they don't hurt as much I'll take it

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited August 2014

    kmmd, I think he was just being a spiteful idiot.  His treatment failed to help the pain (not this CIPN) that I was going there for, and I had told him I wasn't coming in again.  They don't like when the wizard curtain gets pulled back.  He was just a spiteful man with a few needles.

  • PeggySull
    PeggySull Member Posts: 686
    edited August 2014

    there are quite a few quacks in acupuncture out there.  I've got a good one I think ...So hard to find  one though.  I am slowly regaining sensation in my feet but it is really slow going but better than nothing.  I've added alpha lipoic acid to my B6 B12 regimen.  A.couple more supplements added that I've read about on this thread but it's too early in AM to remember.  I've been having a really hard week sleeping and I don't know why.  Second time in last 3 days I've woken at 4 am and couldn't get back to sleep.  Yuck.

    After I get more feeling in the balls of my feet I am going to start physical therapy for balance issues.

    Hugs to all,

    Peggy

    PS.  Acupuncturist suggested I alternate a warm and icy foot  bath in evening several times for insomnia (and could help the feet).  Haven't tried this yet.  Maybe tonight.  Need to find some container to.soak them in.

  • lovewins
    lovewins Member Posts: 881
    edited August 2014


    Hello ladies....

    I read drinking sour cherry juice can help with insomnia, I have been eating cherries everyday and seem to be sleeping better.  Will be sad when they go out of season. 

    I am apprehensive about going to an  Acupuncturist that is just awful what he said to you Elimar.  Shame on him. 

    I believe my feet are getting better s-l-o-w-l-y.  Now I am having muscle spasms in my feet that are not painful like a Charlie horse but weird none the less.  Unsure if they are related to nerves or taking Tamoxifen.  I know if I asked my MO he won't know anything about it or say it is unrelated.

    Healing hugs and thoughts to everyone.

     

     

  • ktym
    ktym Member Posts: 2,637
    edited August 2014

    lovewins, so many women have complained about Charlie Horse's with Tamoxifen it is hard for me to believe it is a coincidence. 

    elimar that ticks me off no end. That is just spiteful and doctor's aren't supposed to do that. He's in the wrong profession

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2014

    Peggy:  You might start with water aerobics.  It's less stressful on the body & I find it much easier to re-learn balance in the water.

  • pip57
    pip57 Member Posts: 12,401
    edited August 2014

    Look for Chinese trained acupuncturists.  The ones trained here get a crash course and only get the basics over a few weeks in class.  

  • pip57
    pip57 Member Posts: 12,401
    edited August 2014

    We organized a banquet last night and I was testing the water temp in the warming trays. I did the finger dip method ( I know, not the smartest way).   I held my finger in the water and declared that it was barely luke warm.  My friend did the same and pulled her finger our while yelling in pain.  So did the next friend. They wondered how I didn't notice. I suddenly remembered, oh yeah, I have neuropathy.  

    Didn't realize how bad it has become.  

  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2014

    wow pip.....that is scarey. hoping it improves soon

  • Thimbleberry
    Thimbleberry Member Posts: 27
    edited September 2014

    This is an interesting thread.....I think that I have neuropathy after reading what everyone has to say. I knew that anastrozole was supposed to cause joint pain, so I assumed what I was experiencing was just that. During chemo, I developed small blisters on my toes. Since chemo, I lost several toenails....all have grown back except my big toes. My podiatrist told me that the nails on those will not grow back. When I begin to walk after sitting, it is very painful....my feet do not want to bend. It is the worst upon waking in the morning. I walk 3 to 6 miles five days a week, but it doesn't seem to alleviate the problem. I did not have this problem before chemo. Has anyone had luck with vitamin B infusions?

  • Denise-G
    Denise-G Member Posts: 1,777
    edited September 2014

    I had my first neuropathy injury 10 days ago.  I cannot feel the toes on my left foot.  I was helping my sister move.  Because I can't feel anything, I was SHOCKED when I looked down at my big toe and it was twice its size and black and blue all over.  I never felt the pain, still don't know what I did, etc.   The good news is it has healed and looks so much better.  Everyone wanted me to go get an x-ray.  No way, said I.  After cancer treatment, a little toe injury isn't anything to get excited about.    It was still weird, though!  The moral of the story is, protect those feet if you are doing hard labor!

  • proudtospin
    proudtospin Member Posts: 5,972
    edited September 2014

    Denise, sorry about the bum toe~~

    I hit my toes all the time and only realize I bumped them after the fact when I see some red bruising on the dang thing.

    wish I knew a solution, although, my trainer suggested massaging the feet and it does help a bit

  • ktym
    ktym Member Posts: 2,637
    edited September 2014

    pip, it is so not funny but it is, I have so been there

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2014

    Thimbleberry - Welcome but sorry you have to join us.  I've never heard of toenails not ever growing back due to chemo.  I do know if there is an injury or infection to the nail bed you can lose the nail permanently.  Adriamycin can cause blistering.  Look up "Hand & Foot Syndrome" to see side effects and ways to treat.  I took B-6 and B-12 all through treatment and added Biotin for my hair & nails once chemo & rads were done.  Still taking all three.  MY PCP recommended putting Tea Tree Oil on my nails at least once a day.  My nails are still brittle & lift some back towards the cuticle but I'm not surprised since I'm still getting Herceptin infusions.  I don't think the B vitamins are helping the neuropathy.

  • Thimbleberry
    Thimbleberry Member Posts: 27
    edited September 2014

    MinusTwo, thanks for your insight and information. I will check out the hand and foot syndrome section for more information. I see my oncologist today, and I will ask him if he knows of any thing to help me. I hate to admit it, but it seems as though the ladies on this discussion board know more about side effects than he does.

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