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Vent about Permanent Neuropathy

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Comments

  • Rosiesride
    Rosiesride Member Posts: 197
    edited November 2014

    does anyone have leg pain and fore arm discomfort from the neuropathy? It's not just in feet and hands ....Rosie

  • proudtospin
    proudtospin Member Posts: 4,671
    edited November 2014

    I have pain in my thigh at times, not sure it is the neuropathy as have had it for some time, it seemed to be a SE of my statin, changed up my statin and it went away, it does return at times so......I stretch to deal with it

  • proudtospin
    proudtospin Member Posts: 4,671
    edited November 2014

    BB, sorry about your problem, have you considered a good ENT?  I have one for my dang sinus issues and now realize that ENTs work on more than just sinus and some might be off help to you.

    yeah, I do get it on the job thing, always thought I would retire from my job and work part time somewhere like in retail or something as I was in sales.  But they all want you to be on the feet for a full day and no way could I do that

  • proudtospin
    proudtospin Member Posts: 4,671
    edited November 2014

    BB, guess  I have talking to my ENT about my crappy balance and my one time thing of vertigo.  Had a terrible experience with the  nuerologist regarding that and wish I had known my ENT at that time.  I was using a doc who called herself Wholestic at the time.  It was not a good experience.  The doc had a mother who was dealing with BC so I assumed that she was understanding about the total cancer thing.

    When my sinus started acting up, she was useless.  I switched back to my former doc as soon as I got on medicare and best idea for me.  I felt like the Wholestic doc was very uninformed and also not connected to the rest of the local medical community, but that was my experience

  • Tobycc
    Tobycc Member Posts: 578
    edited November 2014

    I am confused...why would a person doing an echo gag? That is horrible

  • proudtospin
    proudtospin Member Posts: 4,671
    edited November 2014

    the ENT just looked up  my nose and said, you have polyps.....then of course it was confirmed with a scan.  Two dif ones confirmed that I needed surgery to remove the polyps.  I had the surgery and now work to prevent them coming back.  I asked him the sinus issues could have caused some of my balance issues and vertigo, he said it could very well have.  Now I work hard to keep any infection or polyps from coming back.  Love the guy, he has me using meds but also using saline spray 4 times a day to clean out the dang nose.

  • pip57
    pip57 Member Posts: 7,080
    edited November 2014

    Seriously ladies....I cannot believe the difference in my neuropathy issues since I started with my "herbal" treatments. I did not expect such goo and lasting results. I will find the study that I came across so you can check it out.

  • pip57
    pip57 Member Posts: 7,080
    edited November 2014

    http://www.ncbi.nlm.nih.gov/pubmed/23237736

    Here is the link.

  • Tobycc
    Tobycc Member Posts: 578
    edited November 2014

    oh Bosum , will continue to lift you up in prayer. Snuggle in, and pull out all the tools that work for you!

    I still don't know if my SE is neuropathy or not. Today yes the bottom of my feet really hurt. Not tingling though thighs feel like I caught three baseball games. Hmmmm. SE from taxol maybe

  • minustwo
    minustwo Member Posts: 13,389
    edited November 2014

    Bosum - Thinking about you & sending hugs.

  • proudtospin
    proudtospin Member Posts: 4,671
    edited November 2014

    Bosum, thinking of you also as it seems most of the country is cold and nasty so hoping you can find some relief with some warmth?  Gee, I just found a pair of fleece slippers that are too small for me, they are really warm, wonder if you could use them?  they are about a size 8 and for now, plan on sending with my next pack to Lupus folks?

  • MarieNJ
    MarieNJ Member Posts: 183
    edited November 2014

    I was taking Lyrica for 1 month. My Neurologist said I should try it although it is mostly for nerve pain. I don't have the pain, just tingling and numbness. He said "time" is the healer of chemo-induced neuropathy. I do feel a slight improvement. I do get zingers from time to time in my hands and feet. Most annoying is the numbness around my face especially when I raise my eyebrows. However, I do feel a slight improvement in the face area as well. Hoping this really does go away in "time".

    Marie

  • minustwo
    minustwo Member Posts: 13,389
    edited November 2014

    Bosum - I can give you a small glimmer. My neurologist said 70% of people get some better but it takes up to 2 years after chemo. Looking at your diagnosis date I'm guessing you're only a year out??

    I'm almost one 1 year PFC (not counting Herceptin) and I do have more feeling in my fingers. I can pick up pennies now and zip up my jeans, and I can wring out my washcloth better & usually open jars w/o help. So I'm still hoping for improvement, especially w/my feet.

  • minustwo
    minustwo Member Posts: 13,389
    edited November 2014

    Bosum - Sorry it's a down day for you. I think it's harder when the days get dark so early & it's so darn cold the most enticing thing is to burrow into a quilt.

    Maybe someone else will weigh in w/a naturopath story. I decided a year ago that i wasn't going to take any more 'new' drugs until all of the chemo poisons are out of my system. Most days I try to concentrate on anything else but neuropathy and I try not to 2nd guess the minute day to day changes. Of course I'm brought up short when the lack of feeling in my feet causes me to loose balance when putting on my underwear. Not a pretty picture LOL.

    As for chemo brain - no tingly feelings in my head, but I walked from the kitchen to the garage this morning & of course had no idea what I went to get. Actually had to go back & forth several times until I finally remembered. So that was my exercise for the day. Thinking of you!!!

  • elimar
    elimar Member Posts: 5,887
    edited November 2014

    MinusTwo, Glad to hear that you can pick up the pennies now. That is an improvement! (Not to mention being able to zip ya' drawers up.)

  • TJG2
    TJG2 Member Posts: 7
    edited November 2014

    PIP57, did you get the traditional "herb" or is medicinal available in your region?

  • formydaughter
    formydaughter Member Posts: 121
    edited November 2014

    I have it in my feet and now have tooth sensitivity to hot and cold - anything not room temperature. Neurontin helps but doesn't eliminate it. It feels like it is not working, until I stop taking it and realize how inch more it hurts without it. It helps my "fire bra" too left from surgery. My nipple tattooing increased the fire bra. I feel a bit inadequate from having trouble with what is supposed to be a relatively easy procedure! They just increased my dosage to try to remedy it.

    Thanks to the barrage of TV ads from pharma, including those for Lyrica, my mom called me to proclaim that if I have neuropathy, I must be diabetic. Gotta love it...

  • minustwo
    minustwo Member Posts: 13,389
    edited November 2014

    ForMyDaughter - sorry about your neuropathy.

    Thanks for my laugh of the day from your Mom. Hmmm diabetes. Well at least the name "neuropathy" is getting out there even if it isn't the same as CIPN.

  • Unknown
    Unknown
    edited November 2014

    wow didn't know the teeth sensitivity was part of it also! great

    so, i was a stomach sleeper all my life - arms up under my pillow - but, for obvious reasons, had to give it up when this all started ( i know it's not good for my back either) anyway, things have been feeling better ( too bad i'm under the knife again next week) so i have been allowing myself some stomach time at night - but my arms go completely numb! not tingly pins & needles - just numb - hands are like gone. Is this a product of the neuropathy as well?? it's both arms equally so I don't think it's lymphnode related.

    I am also trying a new cream - Topricin - that seems to be working well on my feet - and it doesn't smell!

    and here come the holidays - ready or not! hope you are all able to enjoy them with loved ones

  • proudtospin
    proudtospin Member Posts: 4,671
    edited November 2014

    Bossum, so glad you have been able to document the pain, yeap docs just are a real waste unless there is something that they can do that makes them money!!
    I know how you feel, some days my feet hurt so bad and then some others not so. Balance follows the pain as on days when it is not bad, my balance is much better

    good luck and keep in touch

  • minustwo
    minustwo Member Posts: 13,389
    edited November 2014

    Bosum - what supplements are you considering? I've been taking B-12, B-6 and acetyl L Carnetine for neuropathy since I started chemo in March 2013, but I stopped all my supplements last week to see how that turns out. My neurologist said those three were OK but not to take too much B-6 - that it could cause more neuropathy issues than it solved - so I'd scaled back to 100 mg/day plus what's in Centrum Silver.

    I agree w/ProudToSpin - a journal can be a marvelous tool.

  • minustwo
    minustwo Member Posts: 13,389
    edited November 2014

    Bosum - I'm sorry things are so unsettled & difficult. I don't know anything about brain tingling but I understand it's scary. When I look up "head paresthesia" there are lots of causes besides CIPN. Are there any of your regular docs you can talk to, even for just a consultation? Hopefully your answer will be something easily controllable. Sending hugs!!!

  • proudtospin
    proudtospin Member Posts: 4,671
    edited December 2014

    gee, I think if it is more normal then that is good~~keep it up and stay conscious of the form

    my steps are better too but not sure what I am doing dif only I am not pushing as hard~~

  • minustwo
    minustwo Member Posts: 13,389
    edited December 2014

    Bosum - 4" stilettos? Wow. Bright red? Peep toes? Oh shoe envy!! I haven't even tried to wear "kitten" heels. In fact I haven't worn leather shoes. Just my SAS nubuck sandals & Easy Spirit Traveltime clogs - oh and tennis shoes a couple of times & my Sperry Docksiders. I feel so much "safer" in rubber sole shoes for some reason. I did a first pass on the shoes in the closet earlier this year but wasn't nearly ruthless enough, believing that my feet would get at least some better. We'll see.

  • ktym
    ktym Member Posts: 673
    edited December 2014

    Formydaught: it shouldn't be funny, but your post about your Mom and the Lyrica commercial really did give me my laugh of the week. I can so see how that commercial would do that. Those commercials are something else!

    BosumBlues: I'm sorry about how hard it is to lose the chemo curls, it really does seem like it really wouldn't be too much to ask to keep some things


  • Unknown
    Unknown
    edited December 2014

    pretty sure Lyrica has been advertised for about a half a dozen different ailments over the years...at least Neuropathy is getting some attention - even if only the diabetic kind - they need to find something to provide relief! & not just a disguised anti-depressant - otherwise we might as well just be on the "natural" cure 24-7

  • MarieNJ
    MarieNJ Member Posts: 183
    edited December 2014

    Hi Ladies,

    I tried Lyrica for about a month and a half. My primary doctor said I should have upped it because the strength was too low. The Neurologist Oncol in NY said he was just going to try it at a low dose for 1 month. He said it usually works for nerve pain. My annoyance from neuropathy is basically numbness and sometimes a zinger in my feet. I ended up stopping the Lyrica and go with the "natural" wait and see attitude. It seems like it got slightly better. I'm dealing with it in my face too especially if I raise my eyebrows. The numbness on the bottom of my feet is bothersome although it hasn't stopped me from walking on my treadmill 1/2 hour a day. So that is a good thing. My hope is that this improves over time. I heard it can take up to 2 years. UGH

    Marie

  • minustwo
    minustwo Member Posts: 13,389
    edited December 2014

    Probably a dumb question, but has anyone w/CIPN tried "drunken raisins"? I know people who have had success w/this concoction and arthritis pain.

  • dsgirl
    dsgirl Member Posts: 193
    edited December 2014

    Minus Two

    I have neuropathy in both feet, not sure where it came from, maybe antibiotics, or my surgery itself, or radiation, however I did not have any chemotherapy and I do not have diabetes. It's very odd, but I will be willing to try the drunken raisins, and will report back. I read it may take up to 6 weeks to see results, and it will take a while to create the drunken raisin since they need to soak up the gin before eating nine a day.

    Thanks for bringing up the subject.

    Dsgirl

  • Andi67
    Andi67 Member Posts: 314
    edited December 2014

    Hi everybody,

    I've been stalking this thread again but haven't contributed in forever..... I am almost two years out from chemo, and my neuropathy seems to have gotten SLIGHTLY better. My hands aren't an issue so much anymore...I don't drop things, I can get myself dressed and button my clothes, etc. However my feet- that's another story. When I am laying still they feel like normal feet, but the second I move I am reminded that no, I have completely numb feet. My right one is a lot worse than my left.... my left has gotten about 50-60% better. I don't have pain except for the occasional "zingers" of pain through my feet, which I hope is my nerves coming back to life... but I am not so sure. I have a hard time balancing when getting dressed...I have to hold on to something or sit down or I fall right over. Also - STRESS definitely makes it worse! Someone else said that and I totally agree. Anytime I have a little stress (I have three teenagers, an ex husband, and a fairly demanding job, so that happens quite often) it totally gets worse. I need to keep a journal because I think they are also affected by sugar and caffeine sometimes... and maybe by alcohol? They are definitely better when I am active... we just got back from 10 days in Hawaii and I was on the move a lot, and hardly noticed them. Now back in Denver - cold - and that makes it worse. I have found that massage really helps...I try to get a foot massage/reflexology about once a week. I found a place that is cheap. 

    I have never heard of Drunken Raisins.... but I would love to know what they are....

    I should add that I am Stage IV, and HER2 positive, and was on Herceptin every three weeks until about 3 months ago.I had other side effects that I was attributing to Herceptin so I have been on a Herceptin "vacation" since about mid September, and I have noticed improvement since then. I had a PET scan in November and am still NED, so as long as that continues, I am going to stay off the Herceptin. I realize some people may think I am stupid, but I had to make a quality of life call.

    Thats my two cents!

    XO

    Andi

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