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Vent about Permanent Neuropathy

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ktym
ktym Member Posts: 673

I'm interested in hearing from those with long term this isn't going to get better neuropathy.  Too often when I bring this up I'm told...It will get better...it is temporary...mine got better....take glutamine it works.....have you tried gabapentin....lyrica....    I know there are many here going through worse, including a dear family member right now, however, some days I just can't take it.  I'm tired of discarding the ear rings I want to wear every morning because my fingers don't work well enough to put them in.  I'm tired of dropping things all the time in the kitchen.  I'm tired of how different my career is now due to persistent lymphedema and neuropathy.  I'm tired of hurting every morning and hurting worse every night.   I'm tired of not being able to go on long walks with DH in nice weather because my feet hurt too much.  Please don't tell me it will get better.  I've accepted it won't, please don't deny my reality.  I just wanted a place to vent with others who know what this is like. 

Oh yes, add in, I'm tired of sleeping with my feet wrapped up in a heating pad because the cold triggers the pain. (Which of course makes the hot flashes worse)

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  • socallisa
    socallisa Member Posts: 10,184
    edited January 2011
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    Well, I have had my neuropathy now for almost ten years...thank goodness for Lyrica

  • ktym
    ktym Member Posts: 673
    edited January 2011
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    SoCalLisa,  I thank goodness for Pamelor and a pain management specialist who listens, cares, and takes me seriously

  • socallisa
    socallisa Member Posts: 10,184
    edited January 2011
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    That class of meds didn't work for me, either did neurontin, but Lyrica works

    funny how we all have different reactions to the same meds..

  • ktym
    ktym Member Posts: 673
    edited January 2011
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    It is funny.  Now gabapentin/neurontin worked GREAT on the hotflashes, just didn't touch the neuropathy.  Magnesium didn't work for my hotflashes, but, really helped a friend of mine

  • squidwitch42
    squidwitch42 Member Posts: 1,467
    edited January 2011
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    I wish you the VERY BEST, and am so sorry you are having the troubles you are. It sounds really rough.

    I am also being treated for neuropathy, and have extensive nerve damage related to hysterectomy and back injury (have had 3 nerves resected and one decompressed in my abdomen.) This TOTALLY changes one's quality of life.

    I hope it helps to know you are not alone.

    traci

  • binney4
    binney4 Member Posts: 1,466
    edited January 2011
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    Kate, there aren't words. I just ache for women like you who are dealing with this (and the way-too-many who are being brushed off by their doctors). I'm grateful that you have a doctor willing to listen to you, but so wish there was a "fix." It's poor comfort, but just wanted to steer you to the practical suggestions for coping that our RIBP women have contributed to the StepUp-SpeakOut.org RIBP page. Their day-to-day coping issues are similar though obviously not quite the same, but hopefully some will resonate with you:

    http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#coping%20tips0

    Wishing I could DO something!Frown
    Binney

  • kira
    kira Member Posts: 659
    edited January 2011
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    Kate, thank goodness you have a good pain doctor: when Andrea Cheville gave the NLN lecture on pain and LE, she showed all the receptors on the neurons that transmit pain, and it only makes sense that some of us respond to one class of drugs and others to another.

    I take magnesium for migraine prophylaxis--who knew it could be helping my hot flashes.

    For those of us who are dealing, permanently, with side effects that we got in the effort to treat our cancers, I feel that there's this underlying sentiment we have deal with: like--quit whining, we saved your life here.

    When I was quoted in that Washington Post article on LE, some one commented just that--quit complaining about how it impacts your life, at least you're alive.

    Well, it's not a zero sum game. Of course I'm glad that I was treated, and I can also be upset because I acquired a permanent disease as a result.

    You are one brave woman Kate--and like Binney, I wish there was more I could do.

    Kira

  • mrsnjband
    mrsnjband Member Posts: 64
    edited January 2011
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    Hi Kate,

    Yes we are thankful they saved our lives.  But it gets really hard to deal daily with the side effects of our treatment. I have neuropathy in my hands & feet.  LE in my arm & trunctal.  I have permanet pain in arm & ribs.  I have a wound that won't heal.  I have anemia due to radiation.  It all SUCKS!  But it is OKAY to come here and VENT about ALL OF IT!!!

    I hear you & I feel your pain.  Love NJ

  • Texas357
    Texas357 Member Posts: 332
    edited January 2011
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    I've had neuropathy in my fingers for 2 years now past chemo, and the roof of my mouth and tip of my tongue are also semi-numb. My oncologist has also told me to "be patient" but as others have said, that seems like a hollow marching cry. I too have trouble with jewelry. I used to do woodworking but I don't trust myself around sharp equipment since I can't feel my fingertips.

    My lasting side effects from treatment:

    1. An ugly 1/2" wide scar across my back from the lat flap surgery, and red, raised scars from the mx and reconstructions.

    2. Eyebrows and eyelashes so thin that I need tattoos for them to be seen.

    3. Super dry skin, hair and nails

    4. Neuropathy: hands and mouth

    5. Lymphedema

    6. Painful sex

    7. Non-working tear ducts (scarred from taxotere). I must carry tissue everywhere because there is pretty much a steady stream of water. Surgery was unsuccessful.

  • mrsnjband
    mrsnjband Member Posts: 64
    edited January 2011
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    Texas357. I need tatoos for eyebrows & lashes. I can put brows on, but no way can I do eyeliner. 

  • LeggyJ
    LeggyJ Member Posts: 195
    edited January 2011
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    I've been suffering from polyneuropathy, in my motor nerves(my feet) and hands.  I did 6TAC in 08 and was taking Nortriptalin(didn't work), so they put me on Gabapentin and then found out I've been allergic to both all along.   My neuropathy is severe on my left side of my body, and there's nothing that will work for the bottoms of my feet.  I had been complaining for 3 yrs., and no one would listen to me.  I had to really dig in, and be my own advocate, until finally they sent to a neurologist..

    Good luck to all of you!!

  • ktym
    ktym Member Posts: 673
    edited January 2011
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    Thanks for the link Binney.  I'm sorry there are so many of us here.  I do think there is a feeling of we saved your life shut up.  I do appreciate that, I just wish there was more honesty and acknowledgement of what the cost was

  • KittyDog
    KittyDog Member Posts: 656
    edited January 2011
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    I have a feeling I will be one of those long term people.  Yeah I am told give it three years.    Well I am coming close to my first year with it with little improvement.  It's in my hands with tingling in my fingertips. It's in feet one worse than the other.  It's also in my legs.  I have numbness on the inside of my legs from the knee down.  The better part....I did have it in my mouth that got better a few months out from chemo.  It was also all the way up my legs with the tingling and that went away in July.  My balance is greatly effected.  I also take Lyrica and my Dr. did prescribe Loritab for those nights I just hurt.  I have not had to use that much at all.  I also have found that I walk much better in Crocs.  Darn ugly shoes but if  it helps I will just have to love them.

  • ktym
    ktym Member Posts: 673
    edited January 2011
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    yeah Kittydog, I think people at work have gotten used to my ugly footwear.  Balance the worst.  Luckily I had good balance to begin with so losing a lot kept me some, but, it is hard especially in winter.  I found yoga and practice helped, but, only because I learned coping mechnisms instead of my feet for balance. 

  • dfleaman
    dfleaman Member Posts: 4
    edited January 2011
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    I feel your pain.  I have neuropathy in my h/f.  I am now on oxycotin 2 times a day and lyrica once a day.  I am still in pain.  I wear white cotton gloves everywhere work and home.  I wear house shoes everywhere I go even work, weddings, church ect.  In the summer I can wear flip flops which are not as bad as wearing house shoes.  I have been dealing with h/f for almost 2 years now.  I do not believe it will ever get better.  I have some bad days and good days.  I pray for the day I can put on my favorite sneakers and go for a long walk.  Cheomo has caused my neuropathy.

    Take Care and I understand your frustation.

    Donna  

  • 3monstmama
    3monstmama Member Posts: 123
    edited January 2011
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    Just found this thread. I feel so much empathy for each of you.   My husband's best friend was treated for lung cancer this past year and the chemo left him with neuropathy in his feet and maybe elsewhere.  It is so hard to deal with.  Like many of you, he enjoyed doing long walks with his wife every day---now its impossible.  Plus just exercising and getting back to normal is nearly impossible.  Like all of you, he is being told to wait and it will get better but in the meantime, it makes him feel very depressed.

    many hugs.

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012
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    When I told my oncologist at Dana Farer in Boston how much Acupuncture helped to relieve the painful joints, and numb spots in my hands & feet, I was told that there is "growing anecdotal evidence that acupuncture helps neuropathy" - which is "doctor speak" for " we don't have scientific evidence, no trials yet, but it seems to be helping many women."

    Both Sloan Kettering in New York, and Dana Farber have acupuncturists in their respective Complimentary Care departments.  My medical insurance doesn't cover the treatments, but I still go every month, more often if I have an acute crisis ( muscle spasms in back last month) and I can't explain WHY it helps - I just KNOW it does.   I saw my acupuncutrist once a week for a few weeks when I started treatment - felt better after the first treatment!

    I wish everyone could try acupuncture....neuropathy is so, so, so hard to deal with.

  • dlb823
    dlb823 Member Posts: 2,701
    edited January 2011
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    Does anyone else have a problem with dropping things?  A mug fell out of my hands last night and smashed on the floor.  No big deal, except it's about the third time something like that has happened recently.  I also foolishly touched something I'd just taken out of the oven that was so hot it sizzled on my finger.  I felt the burn, but nowhere near as severe as it appeared it would be.  I don't have the balance issue or incessant pain reported by Kate & others, but I'm beginning to wonder if the dropping things and not feeling a burn to my finger to the extent I expected might indicate more lasting neuropathy (I did TCx4) than I've wanted to acknowledge.    Deanna

  • Leah_S
    Leah_S Member Posts: 1,929
    edited January 2011
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    Deanna, I don't have the issue you do with not feeling pain/burns etc as much as I would expect, but I sure do have the problem of dropping things. I'm also not as dexterous as I was before. I'm almost 2 years out of chemo.

    Hope we both get better.

    Leah

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012
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    Deanna

    Yes to the dropping things - I've chalked it up to my being distracted & not paying attention to what I'm doing.  I've always been a day dreamer, but noticed this distraction since the chemotherapy, and even more so now on Arimidex - tho I couldn't be more specific about it, I really have to FORCE myself sometimes to pay attention to exactly what I'm doing...and not "drift off" while I'm doing it.

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited January 2011
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    Deanna - yes to the dropping things - its like a spasm and my hand just opens and whatever is in it goes on the floor. 

    I find I am a bit more clumsy too.  I also had the numb arms, hands and fingers back in May and June - after getting scanned all over, finally a visit to a neurologist and a simple set of isometric excercises has almost completely resolved the issue.

    I so sympathize with the notion of never getting better - I am scheduled to begin accupuncture on March 1st to see if I can the back and left leg working properly again - I am not liking needing a cane.  I have high hopes for success!

  • Texas357
    Texas357 Member Posts: 332
    edited January 2011
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    Yep, I once dropped a full cup of coffee over a pile of brand new tee shirts that our charity was selling. Wow, did I feel awful!

  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 567
    edited January 2011
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    My Sis Debbi has had continued probs since her treatment in '99. Even developed RSD. What seems to work best for her is the Neurontin. Even with that though, at all times, something hurts. It sucks. I too wish there was something I could do; for my sister(s), you, and every other girl suffering from this horrid disease.

    Frown

  • KittyDog
    KittyDog Member Posts: 656
    edited January 2011
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    I drop things too.  I think I have decent feeling in my fingertips until I do something.  Then I realize that was darn hot I should have felt that sooner.  Heat makes mine hurt worse oh Joy I live in the South.  I also discovered that extreme cold does to but thankfully we rarely get that type of weather. 

    I don't like anything to touch my right thumb.  Not easy since I have Lymphedema on that side and have to wear a gauntlet.  

    I actually walk pretty good just don't ask me to walk in a straight line!  This summer shall tell me how bad my feet will actually hurt since I was just finishing up treatment in July last year.  I hope it is not bad as some of you have described.  

    Anybody have a hard time coming up and down stairs?  I think that is where my balance issues really come in to play.  I guess I should say balance and muscle weakness.  It is so much better but I can't bring groceries in like I use to.  I know have to have a hand on the rail.  Neuropathy sucks but it is our new life and we shall learn to cope.

    Hope you are having a great day!

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012
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    deleted

  • septembersong
    septembersong Member Posts: 153
    edited January 2011
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    I had twelve sessions of acupuncture at Dana Farber. I loved the treatments, but they didn't do anything to address the numbness in my feet. I don't have pain (and I feel very lucky to have missed that), but the numbness is definitely not great. It makes walking for any period of time a real challenge. I use a trekking pole (I also had knee replacement surgery last summer, so I'm a right mess) when I know I'll be on my feet for a long time.

    My oncologist acknowledged from the beginning (that is, a year after I finished chemo) that this probably would be permanent, and keeps checking for any new treatments. Any new drugs are developed for pain--peristent numbness is just not something that can be treated, from what I understand.

    I haven't seen a neurologist yet, but plan to in 2011. In the meantime, I have the best luck with Mephisto sandals. The cork footbed makes a big difference. They're expensive, but I really can't stand the feeling of walking on smooth stones all the time. The cushioning makes that go away.

    Happy to find fellow travelers on this thread!

    Ann

  • dreaming
    dreaming Member Posts: 219
    edited January 2011
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    I was diagnosed in 1993 and now I found out that I can not walk without fear of falling,the pain and burning in my feet was not my fibromalgya or P.M.R; but neuropathy and it wont go away according to the neurologist. Also I started with hot flashes AGAIN!

  • Joanne58
    Joanne58 Member Posts: 317
    edited January 2011
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    Kmmd--I'm so sorry you're stuck with such crummy neuropathy stuff!  How I hope you get some relief, and all the rest of the women on this thread that deal with painful, debilitating nerve issues.  Mine are just numb issues, but I'll join your rant :)

    Because I had bi-lateral foot neuropathy a year BEFORE my BC diagnosis, my onc. gave me AC instead of TCH.  She hoped I could handle Taxotere w/Herceptin later.  The AC increased my neuropathy after the first 2 tx, doubling the numbness in my feet to my ankles (used to be just in my toes).  I iced my feet for tx 3, which may have kept it from increasing, but after tx 4 of just Adriamycin and NOT icing my feet, thinking that omitting the C would help, my neuropathy went to my finger tips and even my face felt slightly numb and still does (just had brain MRI and it's clear, thank heaven!).  I'm going straight to Herceptin now--no more chemo--and I'm hoping the numb feet is all that will stay.  It runs in my family, so I've been prepared for this, but I should've had 30+ years to get to this point instead of within 3 months, dang it!  I'm worried it will increase further than my grandmother's and father's foot neuropathy.  They were able to walk and do things, despite the numbness, but I may not be so lucky due to the fast-track affect of chemo. I have a neurologist that told me last year there was nothing that could be done for me, since I wasn't experiencing pain and the cause of neuropathy was unknown. 

    Deanna--I'm also feeling more clumsy and dropping things, too.  I don't think it's age--it's chemo messing with our concentration and nerves in our extremeties. 

    I'm doing feet/leg xercises from the Livestrong.com site.  I can't paste the link (computer issues) but if you go to the site and type in "exercises for idiopathic peripheral neuropathy,"  it should work.  They're basic exercises that help your balance, etc.

    Is anyone taking Acetyl L Carnitine or lipoic acid?  These are usually taken during chemo to prevent neuropathy, but my onc., neurologist and pharmacist didn't advise it.  I think they're on the fence about the issue of amino acids building/strenthening cells, including cancer cells?  But the studies in the US going on now about supplements will help get them off the fence soon, I think. Despite my doubts of their advice, I chose to go along with my Dr.s and hope I don't regret it.  Anyway, supplements are OK, now that I'm done with chemo, so I'm thinking of taking them. I've been taking B6 othe B vitamins already.  Please let me know if they are part of your pill-riddled medicine cabinet!

    Thanks for any experience or opinions,

    Joanne

  • lauri
    lauri Member Posts: 59
    edited January 2011
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    Four years out from finishing Chemo (AC followed by Taxol) and my neuropathy is better, but not gone.  Don't drop plates and mugs any more, can hold a paper cup without crushing it because of not feeling it..  Numbness in fingertips is down to the last 1/2 inch, and I can write legibly again.

    Feet still numb and I don't wear shoes with any kind of heel..  Balance is improved after physical therapy and lots of balance exercises, but I still prefer to hold onto a railing when going up or down stairs. 

    But nothing hurts, so I'm OK with it.  Usually. 

  • KittyDog
    KittyDog Member Posts: 656
    edited January 2011
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    I take vitamin B6. My oncologist had me start it during chemo when the numbness started.