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Vent about Permanent Neuropathy

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Comments

  • lanne2389
    lanne2389 Member Posts: 220
    edited May 2020
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    Hi - I've been on Cymbalta for about 2 years - I switched to it from taking Zoloft (for anxiety) and Gabapentin so I could take one less pill and not have the drowsiness from Gab. I think it's working well. The neuropathy in my feet has improved over time (3.5 years) so now I only have a medium to mild “electric zinging" sensation on the very bottom of my feet. I don't think the improvement is from Cymbalta tho - I think it is from massage and walking to stimulate the nerves. I still only wear very cushy flat or very low heeled shoes. Going barefoot, even in the house is still uncomfortable.

    I did try acupuncture during and after chemo and it did help but I didn't keep it up.

    Lanne

  • socallisa
    socallisa Member Posts: 10,184
    edited May 2020
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    gabapentin made me sleepy as I had to add more, but pregabalin ( Lyrica) worked for ne

  • annie60
    annie60 Member Posts: 295
    edited May 2020
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    WHY WHY WHY??!! Why do my feet feel OK during the day- numb with an occasional zinger but when I try to sleep at night, they are so painful - burning and hurting? I can nap during the day, no pain. Let the sun go down and I’m ready to sleep for the night - pain!!! I take two gabapentin before going to bed. I’m exhausted

  • mcbaker
    mcbaker Member Posts: 1,800
    edited May 2020
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    I am taking three gabby and two Tylenol at night. I also have a prescription for a topical pain med, which I get from a compounding pharmacy. I have also recently discovered that if I get 5000 steps or less on my Fitbit, I sleep better. I might try resuming the topical. I have also started Ayurvedic Sleep tea from Davidson's in Nevada. It is mostly chamomile.

  • JCSLibrarian
    JCSLibrarian Member Posts: 548
    edited May 2020
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    The Gabapentin seems to be helping, at least at night. I did overdo it some last Saturday. I helped the yard person do some trimming on azalea beds and redtip shrubs. My job was to drag all the clippings to the street. I probably walked miles! My feet finally calmed down Sunday night after resting most of the day. Has anyone tried rolling your feet on a frozen bottle? I have done that before when I have had tendon trouble. The PA suggested a foot soak in warm water. Seems like there are treatments, but no actual cure for this situation.

  • annie60
    annie60 Member Posts: 295
    edited May 2020
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    I have been putting my feet on an ice pack when the pain gets bad. It does seem to help.

  • moth
    moth Member Posts: 3,293
    edited May 2020
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    I'm stage 4 now & doing taxol again (in combo w immunotherapy) but this time, there's no end date. My first scans showed overall stable so I stay on.

    I've had 7, already dose reduced due to liver fnxn tests being really bad.

    I'm trying to ice but before I was allowed to have someone come help me. Now with covid I'm alone in there & I think I'm not doing as good a job.

    my nails all feel bruised & sore. the tips of my fingers feel numb but I can still do buttons, write etc. But it's getting worse & it seems that my situation is to get some control over my terminal cancer at the cost of my fingers :( My feet are a bit better - just a bit tingly occasionally.

    Because I'm in a study, I cant just take things. Every supplement and prescription has to be approved and many aren't.

    They did approve B6, B12 and l-glutamine. I take B6 100 mg every day. Should I be doing that? Or just around the days of the treatment?

    I don't take B12 because I have very high levels when it was tested.

    I stopped the l-glutamine when my liver fnxn tests went through the roof because glutamine is a precursor to glutamate and I read something about it affecting the liver and we didn't know what was screwing up my liver levels so we eliminated acetaminophnen, I dropped the glutamine and we reduced the taxol. My liver tests are still not 100% normal but the MO is no longer freaking out. I was having to get liver blood work every 3 days for a while!

    Anyway - I'm thinking of gently restarting the l-glutamine. Maybe a small dose only? Only around treatment days?

    mostly I'm just whining ..... every time I type I get reminded of it now :(

  • hikinglady
    hikinglady Member Posts: 625
    edited May 2020
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    Hi moth - maybe it's worth asking your MO about L-glutamine---whether a certain dose would be safe for you. Its 'uptake' is compromised by chemo, and same thing with Alpha Lipoic acid + B vitamins, is what my MO told me. Therefore, adding it was considered more a "replacement" than a supplement, but I wasn't in a study, so you do have that additional thing to consider. My MO also advised me to eat 75-100 g of protein during protein---helps cells repair. Maybe also a good thing to ask MO about? Warm wishes to you.

  • tangandchris
    tangandchris Member Posts: 934
    edited June 2020
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    It's already blazing hot here, but thanks to neuropathy I have to wear socks at the very least to keep my feet from driving me crazy. It's a mix of aching and cold, the sensation is hard to explain. Im just whining, I can't do much else.

  • minustwo
    minustwo Member Posts: 13,116
    edited June 2020
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    tang&chris - yup - it's 95 here with 99 coming next week. I still have to wear socks to bed. Whine on!!!

  • jrnj
    jrnj Member Posts: 407
    edited June 2020
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    I'm not sure what I have. 2 weeks after chemo I had bad pain and numbness in my arms and hands at night laying down. It kept me up and I was miserable so the Dr. gave me dexamethasone. I took that about 5 weeks and felt great. I went off it. Numbness came back, but not as bad, in addition to body aches and pains. Every morning I wake up and my hands are numb. But after I get up and get the blood flowing they are mostly ok. Is that neuropathy? or inflammation? or both? Did I ask this before, because I think I have some memory loss, lol. And CMF chemo is not supposed to cause neuropathy.

  • socallisa
    socallisa Member Posts: 10,184
    edited June 2020
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    I had CMF too.

  • annie60
    annie60 Member Posts: 295
    edited June 2020
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    JRNJ - are you taking an AI?

  • jrnj
    jrnj Member Posts: 407
    edited June 2020
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    Hi Annie, Yes, i just responded to your other post on insomnia, more details there.

  • elimar
    elimar Member Posts: 5,883
    edited June 2020
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    Lots of new pages & posts since I last visited.

    Agree with all those that are encouraging walking and moving and massaging the feet. Blood flow is going to stimulate healing.

    My feet used to be dull achy, numb lumps that hated cold. A heating pad under my desk (in Winter) was a BIG help.

    I have no experience or suggestions with the burning, zinging sensations. What about CBD cream?

    I am 7 YEARS post a platinum-based chemo and I have continued to improve every year. After the first year or two, it slows to a snail's crawl but I have gotten better and not worse. Now if only I could live 50 more years, I might have my old feet back.

    To those at the two year point...some improvement still to come. A little, at least.

  • minustwo
    minustwo Member Posts: 13,116
    edited June 2020
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    Eli - LOVE it. Old feet back in 50 years - LOL

  • mcbaker
    mcbaker Member Posts: 1,800
    edited June 2020
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    I have some pvc pipe I got for pole beans a few years ago. I put them in my garden this spring to support my pea plants, and once they were gone to support tomato plants. I just pulled the peas, but I also discovered that the poles are good to prevent falls while stepping around zucchini plants or strawberries. I am going to get another pole, and just leave them in the garden.

    A sciatica storm a few weeks ago has weakened my right ankle again ( I am now on 2700 mg Gabapentin). I had an appointment for a PT eval so I can get on the underwater treadmill at the hospital. But I had forgotten to call the transportation service, and the taxi was going to be 30 minutes late, so I had to reschedule. The recumbent bicycle at the gym is nice, but I would like to do something else.

    I had not been using the cream for my feet during shutdown. I had not asked for a renewal of the authorization to bill a local charity for the cost. Got that done and asked for CBD to be added to the recipe, but the pharmacist called me today, and it would double the cost. Do not want to do that, when others might have more pressing needs.

    Sunday I went to the gym, and tried to do my standard workout, but was just too tired. Talked with the trainer, and we mapped out how often I had been going to the gym. A week and a half daily, previous to that it had been every other day. I was overtraining. So today I am exerting a conscious effort to avoid going to the gym. Loopy

  • minustwo
    minustwo Member Posts: 13,116
    edited September 2020
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    There hasn't been any activity here in awhile, but the Mods just posted an EXCELLENT interview - podcast & transcript - about Neuropathy. I learned things I never knew. Doesn't make it better, but nice to know how & why. Check it out.

    https://www.breastcancer.org/community/podcasts/ne...


  • moth
    moth Member Posts: 3,293
    edited September 2020
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    that podcast is informative but from 2 years ago - not that much has changed in neuropathy world. The thread just got bumped.

  • socallisa
    socallisa Member Posts: 10,184
    edited September 2020
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    Thanks minus two...I see he didn't touch on paraneoplastic syndromes..I could use some clarity on that..

  • minustwo
    minustwo Member Posts: 13,116
    edited September 2020
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    Oh gee Moth - so sorry I didn't look at the date. Still I was interested to learn the mechanics of how the various drugs "kill" the cancer and the nerves. Guess I jumped on it because my neuropathy always seems to "spread" when it gets colder.

    I'm going to PM the MODS to see if they can get an updated interview, and I'll include your question Lisa.

  • socallisa
    socallisa Member Posts: 10,184
    edited September 2020
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    thanks

  • kamboka
    kamboka Member Posts: 1,053
    edited September 2020
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    I'll watch since my foot neuropathy has worsened in the last month. I restarted Gabapentin but it didn't work the other two times I used it and it makes me a little unstable. Don't need any falls.

  • minustwo
    minustwo Member Posts: 13,116
    edited September 2020
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    I did reach out to the Mods and they are going to pass my suggestion about an updated report/interview on to the editorial boards. I asked them to be sure to address your question Lisa, since I know nothing about " paraneoplastic syndromes". Maybe there are also people in active treatment who are learning new things? Hope others post.

  • mcbaker
    mcbaker Member Posts: 1,800
    edited September 2020
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    Kamboka-- if you are very uncomfortable, gabapentin may be your most workable option. I have many reasons to be unstable on my feet, and I use hiking poles nearly all the time I am out and about.

  • minustwo
    minustwo Member Posts: 13,116
    edited September 2020
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    Kamboka - are you taking the gabapentein for the pain? As mentioned, there's always Cymbalta & Lyrica to try.

    As the podcast points out, there are only meds available to help pain - NOT numbness & lack of balance. Although that information was 2018, I did 'talk' with my neurologist by "My Chart" last month and she reiterated that there was really nothing new. I thought the emphasis on PT was probably useful. I did go for a balance assessment a couple of years ago and they taught me a few good tips. I probably should go for a refresher.

  • kamboka
    kamboka Member Posts: 1,053
    edited October 2020
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    McBaker: My mom said to use a walker. My mind says I'm 20 years old but my body says I'm many decades beyond that. Cancer added a few more years to the wear and tear.

    MinusTwo: I tried Cymbalta and Lyrica years ago for shingles and it didn't work. I would be willing to try them again but none of my docs recccomend them. They always reach for Gabapentin first. I'd also have to probably stop my Celexa before Cymbalta. The Celexa is keeping my hot flashes in check.

  • mcbaker
    mcbaker Member Posts: 1,800
    edited October 2020
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    A walker is impractical for walking six blocks. People who use walkers probably walk two blocks in a whole day. Besides, they are for old decrepit people. IMHO-- or not so humble. Poles just look cooler. I talked to my PT yesterday, and she told me that I really need the two poles; a cane is not sufficient. I am going to quit using the straps on the poles as a substitute for gripping them.

    Insurance won't pay for the others unless the doctor can prove that gabby is not working for that patient.

  • socallisa
    socallisa Member Posts: 10,184
    edited October 2020
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    also the large hiking rods you get at National Parks.

  • kamboka
    kamboka Member Posts: 1,053
    edited October 2020
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    Something I'll have to look into if I can't correct this instability. I start PT next week.

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