Vent about Permanent Neuropathy

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited July 2015

    hmmm, my feet have cramped in the past but now lately. I just had a test that said I did not have any nerve damage in my legs and feet

    I have started sort of focusing on bending my toes and stretching them in the pool, dang but do think it may be helping me or maybe it is the ginger?

  • Italychick
    Italychick Member Posts: 2,343
    edited July 2015

    so talk about weird solutions! I read somewhere a woman puts Vicks on her feet for neuropathy. Yes, Vicks! I have been trying it for about a week. I put it on, then put socks on over it. Crazy thing, it seems to be helping me. Go figure! Is it the camphor, the Vaseline type coating, who knows? But I'm going to keep doing it, can't hurt

  • proudtospin
    proudtospin Member Posts: 5,972
    edited July 2015

    then there are the folks who believe in the bar of soap, that did not work for me!

  • april25
    april25 Member Posts: 772
    edited July 2015

    I had a lot of foot cramps during chemo, but they lessened afterwards. Still get them now and then if I'm over-tiring the muscles.

    The numbness on the top of my foot... There was a period when it was very sensitive, but that has lessened as my nerves have slowly healed after chemo. It's still slightly numb, but not that tingly, irritated, sort of puffy/swollen feeling it also had.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited July 2015

    recently I have been sort of exercising my feet in the pool, gently flexing the foot back and forth, do believe it is helping the tootsies

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2015

    Proud - I agree about the pool. I'm doing 1/2 speed water aerobics. My participation is mostly in the stretching exercises & not the jogging/jumping moves, but I think I have more range of motion in my feet - if not more feeling.

    April - my MO have me potassium for the foot & leg cramps. I couldn't choke down enough bananas - LOL.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited July 2015

    the pool is the best for all body aches!

  • april25
    april25 Member Posts: 772
    edited July 2015

    MinusTwo -- Oh! I had low potassium! Tried to eat bananas, and they finally had to give me those huge horse-pills and put some in my IV drips... But I didn't realize that could cause the leg and foot cramps! Interesting.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited July 2015

    for a time, I was getting foot and leg cramps, tried to eat bananas but not fond of them for every day! if you research, you will find other foods hi in potassium like potatoes! I sort of stopped pasta in my diet and starting eating potatoes. Also dried apricots are good to get your levels up. Not sure but not having the dang cramps anymore

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited July 2015

    feel like i have ants crawling on my feet sometimes. Is that a feature of my neuropathy

  • proudtospin
    proudtospin Member Posts: 5,972
    edited July 2015

    do not know but my feet are just nuts, have found the pool and exercising there is a big help

    my back doc had me tested for nerve damage in feet and legs but nothing is wrong there and he thinks all will resolve itself, yeah sure

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited July 2015

    F.Y.I all you potassium takers: Unless you have a disorder or are on meds that cause you to excrete your electrolytes like crazy, then you are probably getting enough dietary potassium. However, if you are not getting enough magnesium (and this is more likely) then you will not be able to utilize your dietary potassium efficiently. I urge you to investigate this for yourself mainly because too much potassium is a bad thing.

    As for my feet these days, maybe a 1% improvement in each. I'll take it!

  • dsgirl
    dsgirl Member Posts: 276
    edited August 2015

    Minus Two,

    Saw on another forum that it is your Birthday today, so.........................

    Happy Birthday to you

    Dsgirl

  • april25
    april25 Member Posts: 772
    edited August 2015

    elimar-- congrats on the 1% improvement. Hopefully that'll continue, even if it's too slow!

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2015

    Thanks dsgirl but it's not until 8/25. I'll celebrate any extra days tho.

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited August 2015

    The motor nerves are like cords that can be spliced together and grow into placeThe sensory nerves are more like fine hairs or the tiny roots on a plant

  • GirlPowerDebbie
    GirlPowerDebbie Member Posts: 213
    edited August 2015

    Just found this thread today - CIPN sisters! 

    I am 3+ years out from chemo.  My neuropathy has not eased at all.  It did not present until about 6 weeks after I finished chemo.  It is mostly in my right foot and leg, and in my right hand.  Sometimes the ball of my foot will get a horrible stabbing pain that feels like I just stepped on a nail.  The cramping is not as often since I started on Gabapentin (that helped a lot).  The only shoes I feel truly secure in are my tennis shoes.  I can no longer wear my beloved Clarks clogs, or heels, or sandals.  I cannot keep them on my feet, and I cannot risk falling.  I have balance issues.  I do not use a cane, but we have installed grab handles & rails around the house.  I am no longer allowed to carry laundry baskets up/down the stairs.  My DH and my son look out for me and take care of household tasks I cannot safely perform.   I always was a very physical, active person.  Long walks with the DH - not happening.  A lap around the shopping mall and I am done walking for the day, so if I have to walk somewhere in the evening, I take it easy during the day. 

    I do not see any abatement.  Whatever the tiny % occurance of neuropathy (it was the TAXOTERE!  MY MO ADMITTED IT!) was a side effect, well it's 100% for me.  BUT ... I'm here. 

    Debbie

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited August 2015

    My left foot gets electric shock like jolts that come out of no where. Some days the soles burn. Other days are ok. I wear sandals as the shoes pressing on my toes hurt even though the toes are num

  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2015

    I at times I feel like Arnold is squessing my poor tooes

    I have started using a cream I found at whole foods called Topician or something

    is seems to calm the nerves, not a pain thing but calming

    it lets me sleep!

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2015

    Proud - when you get a chance can you check on the name of that cream? I can't find the name you listed on the www. I did find something called Topricin Foot Therapy, but not sure that's it.

    Girlpower - sorry you're here but welcome. It's great that your DH & DS have taken up the slack. Doesn't help wit the anger that we can't do what we always did.

    Chloe's mom - I'm now 2 years PFC and 1 year past Herceptin only. For the first year I only wore my SAS sandals because like you, my toes hurt w/any other shoes. Now about the only shoes I wear are Travel Times by Easy Spirit. Girlpower, if your feet aren't too narrow you might try these. Covers more of your foot than clogs & lightweight.

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited August 2015

    Dr at Hopkins is prescribing a compounded pain cream. I will let you know how it works. Has stuff like Advil and gabapentin in it. 4 different medications

  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2015

    Minus, that is it! let me know what you think of it. I gave some of mine to a woman at the gym, she has fibro and a bad hip from a bad replacement and uses a walker and she liked it

    need to hit up Whole Foods and get a refill

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited August 2015

    Hello everyone,

    I discovered this thread recently and have been reading the posts with great interest. I developed neuropathy in the feet ten years ago after treatment for IDC breast cancer with triple negative receptors. I had Taxotere for three months during chemotherapy and developed a strange numbness in the feet shortly after I ended treatment with radiotherapy.

    I saw my GP, oncologist and two different podiatrists and they all said it was peripheral neuropathy. The oncologist said it was definitely caused by the Taxotere and there was no cure. The GP and the podiatrists also said there was no cure.

    Unlike many of you posting, I have no pain, just an uncomfortable feeling under the soles of the feet, making them feel as if they are rough and dry, whereas in fact they are very smooth to the touch, well moisturised and cared for. I use CCS Foot Care Cream to keep them in excellent condition.

    I do not know if there is a connection but I have developed osteoarthritis in the big toe of one of my feet.

    I was interested to read about the foot therapy cream you are using. Is it a good moisturiser as well?

    Good luck and best wishes to everyone.

    Sylvia xxxx

  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2015

    Hi Sylvia, sort of think we have similar issues, the cream I am using came from Whole Foods and it is softening my feet. I actually wonder if the feets are too soft!!

    any way the cream I found is called Toprican or something like that, it claims to be approved for neuropathy and diabetes as well, it just sooths my feets and I refer to it as calming the nerves and makes a big dif in going to sleep.

    best of luck, I am sure some others have tried stuff

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2015

    I don't really have pain either, just no feeling or weird feelings like rice in my shoes. This goes 1/3 of the way up my calves. The thing I hate most is waking up almost every morning and thinking "oh no, I don't have any feet anymore". I'm not sure how this panic wake-up thought started but not a good way to start the day. Below is a link that i think is the product Proud is talking about.

    http://www.topricin.com/

  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2015

    Minus, have you tried the cream? I need to buy some more!

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2015

    No Proud, not yet. There isn't a Whole Foods very close and I'll be darned if I'll run any errands except strictly urgent in this 100+ degree heat. I've put it on my list for the next time I'm doing errands - which is usually only twice a month.

    BTW - I really think that the water aerobics is helping. I can feel pin pricks that I couldn't before. Still, not sure if that's good or bad. I hate being numb, but I feel lucky not to have pain and wouldn't want to move in that direction.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2015

    Minus, water aerobics is good for all! so glad I have a place to do it regularly. Been working on a stupid back and it has been helping me avoid surgery!

    try to stay cool

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2015

    Proud - I'm enjoying lurking on your CRAZY thread. Hard for me to keep up, but glad you started it.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2015

    oh thanks but I did not start it up! think it was Slow who started it up and yeah, it is a hoot! best thread ever!

    join in, I am sure you have crazy thoughts at times!

    ok I am beat, this trying to be healthy thing is a lot of work!

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