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Vent about Permanent Neuropathy

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  • tangandchris
    tangandchris Member Posts: 934
    edited April 2017

    I have noticed that my feet are so bad at night....tingling, zapping, numb, shooting pains all amped up at night. Its a weird feeling like I have to move my feet or I'm gonna go crazy. Hands too, but not as bad as feet.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited April 2017

    tangandchris~I had that jumpy feeling in my legs for a while, and someone said it could be RLS.

    Bosum~I want you to know that I am thinking of you. I hope you are getting good medical care; there must be something the docs can give you so that you can get a good night's rest. What meds were you taking?

  • maryna8
    maryna8 Member Posts: 1,832
    edited April 2017

    HI, Tangand chris,

    I find that the more I am on my feet in a day the more they will be zapping me at night....for me usually when I lay down in bed they are okay, it is while I am trying to relax before going to bed that they are zinging. And my legs will be restless and achy. I am not on any medications for neuropathy, but have never said never. I have tried a couple of them and didn't like the effects but perhaps did not give them enough time.

    Also as long as I am busy and moving it is not usually noticeable, but when I come to a stop then it is. The problem there is that since the neuropathy has also given me leg weakness, I can only keep moving for so long!

  • maryna8
    maryna8 Member Posts: 1,832
    edited April 2017

    HI, Bosom,

    A rehab nurse I know told me that the best thing for neuropathy is distraction, and I believe that's true except sooner or later we get tired, and want to sit down, or lie down, and relax. That's when the problem gets so much more noticeable. I also tried the Gabapentin and the Amitriptyline, the Gab made me so spacey. the Amitriptyline is supposed to be a pain blocker/anti-depressant. At the time I did have a lot of pain, and it worked to knock that back. But, it made me feel like I was wrapped in cotton balls, like a zombie. So I stopped that one too. I don't want to discourage anyone else from using it, I am very sensitive to any medication, I know several people taking the Gab and they find it very helpful. I just couldn't get past the break-in period, but if things get much worse I may have to. Although my doc told me it wouldn't help the leg weakness, only the peripheral burning, tingling, etc.

  • maryna8
    maryna8 Member Posts: 1,832
    edited April 2017

    Hi, Icietla,

    You have been through a lot in your life, and I am amazed at all the things you have found out about your conditions. That takes a lot of persistence, and a lot of just pure determination to get to the bottom of things. But it seems it leaves you in a place where there is not much to be done about it, if I am reading this right.

    The articles on B12 and other B vitamins and BC incidence are just downright frightening. Because guess what is pushed for neuropathy therapy, B6 and B12 etc. as you know. My doc very recently gave me folinate B vitamins, guess I won't be taking those anymore. Good grief, it's just dead ends wherever a person goes with this thing.

    You must live in a city, I live very rurally and have to travel a bit to see docs; most of them don't know much about neuropathy and don't take it into consideration unless I really push it. I can't imagine ever getting the proper diagnoses you have gotten if you lived around here. I do hope you can find something to do about your PA, and the other conditions as well.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited April 2017

    The leg weakness is scary; that's why we gotta keep our legs strong despite the neuropathy.

  • maryna8
    maryna8 Member Posts: 1,832
    edited April 2017

    Bosom, I totally understand your worries and fears, and I share them.

    Gypsy, I agree about keeping legs strong, but what is the best way? I tried keeping exercised and doing leg strengthening work for almost 3 months; one day my rt. knee began with sharp pain, then my left knee joined in. I backed off the exercises, saw an orthopedic doc, who diagnosed me with osteoarthritis, but it's not like in bad enough shape to need surgery. I knew that already, but it has never bothered me much before. He prescribed a course of physical therapy and it was so painful I stopped after 2 weeks, I couldn't get my normal life duties done because when I wasn't in therapy I was using ice packs! So this week I am having a shot in my rt. knee, have no idea if it will do any good. Walking very far is hard with this weakness, even though I used to walk at least 2 miles a day every morning. Yesterday, for an example, I did weeding outside. I was either bending over or kneeling, after a couple of hours I had to stop because of pain. I feel like an old woman, and don't know what to do. What do you do?

  • gardengypsy
    gardengypsy Member Posts: 499
    edited April 2017

    image

    mary and Bosum~ I do not have the added osteoarthritis problem getting in my way. That is a lot for you to deal with.

    Physical therapy should not make things worse! Is aquatherapy helpful for arthritis? Have you tried gentle body therapies like Tao Chi and Qigong?

    This is my new gardening friend, the "Garden Kneeler" from Gardener's Supply.It is amazing!!

  • urge-to-wander
    urge-to-wander Member Posts: 3
    edited April 2017

    Sorry if this has been suggested or tried before and it hasn't been helpful, but what about Yoga or Pilates for strengthening legs? I need to start some sort of exercise regime as well. I'm six months post final chemo (had to stop after nine of twelve doses of taxol due to onset of peripheral neuropathy) and already I'm experiencing weakness in my upper legs (are those your quad muscles? I'll have to look that up). When I've been sitting too long or anytime after I've been driving, it's getting increasingly difficult to get up. Also, I have bunions on both feet and I have noticed recently that both first toes are starting to cross over my second toes. I'm sure this has something to do with the neuropathy. Maybe I should see a podiatrist as well. Now is not the time to be getting bunion surgery.

    Love the look of the Garden Kneeler. After catching up on this thread I've come to realize that there are many ingenuous devices out there to make life easier

  • vlh
    vlh Member Posts: 773
    edited April 2017

    Ladies, at what point was your neuropathy deemed permanent? I'm several weeks out from my final Taxol treatment and the neuropathy in my hands and feet hasn't improved so I'm quite concerned. My oncologist said experts don't consider the damage permanent until six months. I'm so sorry to hear of the challenges you face daily. :-( Thank you.

    Lyn

  • minustwo
    minustwo Member Posts: 13,389
    edited April 2017

    Urge - yes Yoga would be good for stretching, but the best thing to start is just walking. Be sure you take walking sticks or a cane if your legs feel week. It took me over 3 years, but I hope I've conquered the leg muscle weakness. The feet will always be numb, but as long as I keep walking I think I'll be able to keep some muscle tone. Note - SOME. I won't be hiking up mountains anymore. It would be REALLY bad to have to start all over.

  • maryna8
    maryna8 Member Posts: 1,832
    edited April 2017

    Gypsy, Thanks for the tip, I am going to order that kneeler; will still have to bend the painful knee but at least it will be cushioned. Good idea. I was using cardboard the other day, just to keep the ticks off.

    I have some DVDs to learn Tai Chi, I was waiting for the knee pain to die down, but now that the weather is nice I am aggravating it quite regularly by working outside; getting the shot in the knee Friday, fingers crossed it helps.

  • maryna8
    maryna8 Member Posts: 1,832
    edited April 2017

    Urge-To-Wander,

    Yes, your upper leg muscles are quads. I hope your neuropathy symptoms are not permanent. I don't think anyone can answer your question about if it will be or not, nobody seems to know. My acupuncture doc told me that with neuropathy, sometimes nerves are damaged, and sometimes they are dead. If damaged they can rebuild, if dead they will not. However, sometimes there will be new nerves grown, according to him. Not sure if that's correct, I've heard different theories. My upper leg weakness started very suddenly about a year after finishing chemo, although I had other neuropathy symptoms since my first dose of Taxotere.

    I have a bunion on one foot, I had it before the chemo and neuropathy. The toes crossing is one of the things that happens eventually with a bunion, it probably does not have anything to do with the neuropathy. I had surgery on the other foot years ago and removed the bunion there, I wish I would have gotten both feet done, in hindsight.


  • maryna8
    maryna8 Member Posts: 1,832
    edited April 2017

    VLH, Hello. Nobody has ever told me my nerve damage was permanent, or that it wasn't. I found the doctors I saw just didn't know, they didn't seem to know a whole lot about how this condition progresses, or not. My feet felt strange after my first treatment with Taxotere, I told my MO, he said "Oh, that will go away as soon as you finish." I'm sure it does for some people, and not for others. I wish I had answers for you.

  • maryna8
    maryna8 Member Posts: 1,832
    edited April 2017

    Minus, I think you have a good plan, just to be determined and stick with it. I have found I have to ration myself, if I have a lot of house/outside work to do, then I can't walk much on its' own, but just have to do the work. That is what has been so hard for me, trying to accept I can't do it all anymore.

  • dtad
    dtad Member Posts: 771
    edited April 2017

    Hi all. I have peripheral neuropathy caused by an autoimmune disease not chemo. However it really doesn't matter what caused it. The symptoms are the same :( The only exercise I can really tolerate is walking and Pilates. Joseph Pilates used it to rehab WW1 victims. There is definitely a learning curve though. You need a class or a good video to get going. Good luck. Hope this helps!

  • minustwo
    minustwo Member Posts: 13,389
    edited April 2017

    maryna - YES, you're right. The hardest is trying to accept that we can't do it all anymore!!! Or even lots of little things anymore. Not only can I not sew on a button, I can't even thread the needle.

    My neurologist told me shortly after chemo that it would get better. However she explained the definition of better was related to where I was at that point. It might only be marginal improvement, but likely something. Or I might see spectacular changes. Unfortunately "better" did not mean back to where I started. It meant only a movement up the scale.

    I'm very fortunate that I rarely have pain. I'm resigned to my feet being dead after 3 years, and occasional numbness & tingling in my fingers. That causes no end of problems, like loss of balance when I close my eyes, notably in the shower when I'm washing my hair. Compared to those of you in pain or plagued with severe leg weakness, my complaints seem minor. I'll keep walking as long as I can see my feet & the ground so I don't trip. (sad thought - will this make me a hunched over little old lady barely shuffling along trying to watch every step? - Sigh)

  • minustwo
    minustwo Member Posts: 13,389
    edited April 2017

    dtad - thanks for the Pilates info. I didn't know the history.

  • elimar
    elimar Member Posts: 5,887
    edited April 2017

    VLH, Personally, I feel there is a good amount of healing that can still occur after the 6 mo. period. Physicians kind of fall back on the 2 year time period...meaning, the neuropathy you are left with at that time is most likely permanent. Personally, (again) I feel there is still a slight amount of healing and improvement that can occur even after the 2 year period. In general, after the onslaught of chemo is over, your body and nerves do their best to recover, but many times our best is not good enough. If you have severe symptoms PFC, the reality is that you might not make it all the way back. People with milder neuropathy have a better chance to come back closer to normal. These are just general statements so, of course, there can be exceptions. You can take 10 ladies, give 'em the same chemo for the same length of time, and end up with 10 (8 or 9 anyway) different outcomes.

    Just know that you are still in the healing period. Good Luck on the recovery progress you are able to make!

  • minustwo
    minustwo Member Posts: 13,389
    edited April 2017

    Elimar - good point. I've read all the residual effects of chemo don't even leave your body for a full year.

    And I did have a physical therapist who works only with hospital patients tell me that it was important to keep stimulating the remaining nerves.

  • maryna8
    maryna8 Member Posts: 1,832
    edited April 2017

    Minus

    "And I did have a physical therapist who works only with hospital patients tell me that it was important to keep stimulating the remaining nerves."

    That would explain why my acupuncture doc likes to stimulate the neuropathy points on my feet and ankles. I don't like it when he does it on a lot of points, because it makes things tingle and burn a lot more than normal. But he said it's important to keep stimulation going because dead nerves won't come back, but you may generate some new nerve activity if you have anything there at all. I was in his office today, he did needle just a couple of the neuropathy points, so I will probably have a little extra discomfort from this trip. He said it's good to have some feeling (though being on the receiving end, it's not all that pleasant!)

  • minustwo
    minustwo Member Posts: 13,389
    edited April 2017

    maryna - yes & I'm hesitant to provoke feelings that might cause pain. I don't like dead, but it's better than pain. Guess I could go see the neurologist again.

  • vlh
    vlh Member Posts: 773
    edited April 2017

    Thanks so much for the feedback. Numb fingers crossed, hopefully I'll be lucky & the side effect will be temporary.

    Lyn

  • Chloesmom
    Chloesmom Member Posts: 626
    edited April 2017

    Foot felt like wood this morning. Went for Zero Balancing treatment. Works on blocked energy. Felt like a massage as she worked on tight spot on foot. Walking betterment afterwar

  • gardengypsy
    gardengypsy Member Posts: 499
    edited April 2017

    Thank you for your suggestions, everyone. We need to continue searching for and sharing remedies.

    I believe we need to ease the effects that the modern medical assault has had on our bodies with integrative medicine: acupunture, PT, naturopathy, Pilates, Feldenkrais, etc.

    I think it's helpful to have practitioners who haveoncology expertise..

  • maryna8
    maryna8 Member Posts: 1,832
    edited April 2017

    Chloe's mom,

    I had a massage yesterday, a therapeutic massage. She always finds knots in my feet, my calves, and my back and shoulders. She works on them with hands and hot stones, sometimes very painful while she is doing it. But she said my feet felt like they ran a marathon, which is far from true! Always feels better afterwards, for a while, till things tense up again.

  • Thirsty
    Thirsty Member Posts: 1
    edited April 2017

    I began treatment for HER2+ IBC stage 3 and DCIS stage 3 in Oct 2014, my first 3 rounds of chemo were Herceptin and Docetaxel. The neuropathy began immediately, worsened over the course of chemo (the second 3 rounds of chemo were FEC-D) and eventually affected feet, hands and lips. Within the last year my neuropathy appears to be increasing with numbness to the knees and the wrists. At night my legs feel like they are running a fever and wake me every few hours. My lip numbness stopped back in 2015 but the hands and feet remained painful, without meds my pain ranges from a 2-3/10 to 7-8/10 daily and is affected by standing or being on my feet. The pain ranges from burning to sharp stabbing and at times it feels like electrical current is running through my feet. My oncologist told me that whatever neuropathy was remaining in March 2016 would be mine for life. My palliative care doctor (who was an oncologist) remains hopeful there will be improvement.

    Lyrica and Gabapentin have both been tried to control the pain, eventually the side effects became too problematic. I have used T3s throughout to help control pain when needed. I have a good pain tolerance and try to avoid taking any more than are absolutely necessary. Recently I had an orthopaedic surgery for osteoarthritis in my foot. I started Noritryptaline 2 weeks prior to the surgery to help alleviate pain in my feet. It has worked well for the neuropathy but once again I do not like the side effects and am hoping to discontinue them soon.

    It is what it is has been my mantra throughout the last 2.5 years. Dealing with chronic pain has been challenging. I have found 2 books that were helpful, The Pain Survival Guide by Dennis C Turk and Frits Winter and Managing Pain before it manages you by Margaret A Caudill. As someone who tried to ignore pain and discomfort using the Pain Coach app, from WebMD suggested in the Managing pain book, has been helpful. It helps me check in with my body and determine the type and level of my pain and what may have caused it to worsen, although I was already aware of this the app makes me answerable to myself, making me take time to consider what I can change to make improvements.

    I had no idea I would be left with this legacy when I began treatment, I am happy to be alive but I am disappointed that my life has been so transformed by chronic pain.

  • maryna8
    maryna8 Member Posts: 1,832
    edited April 2017

    hi thirsty,

    Glad u are here, sorry you find yourself with this problem we all have to differing degrees. It is nice to talk to people who understand right?

    The neuropathy I have started after my first treatment too, that included Taxotere.

    Then I landed in the hospital with neutropenia and fever, so after that they split up my drugs. I finished with the Taxotere alone, and neuropathy just got worse. They shrunk my dose, I iced my feet but too late. I needed that the 1st session. So I understand how you feell, I am glad and grateful to be alive, but sad at the toll t aken on our bodiies.

    I have tried some of the drugs too, like you I don't like the SEs. I'm not on any now. What kind of surgery did you have on your foot? I had a shot in knee today, hope it works out. Because of osteoarthritis.

    Thanks for the book tips, good to know.


  • gardengypsy
    gardengypsy Member Posts: 499
    edited April 2017

    The arthritis on top of the neuropathy really sucks. Sorry you have to go through this, ladies.

  • Chloesmom
    Chloesmom Member Posts: 626
    edited April 2017

    I have Raynauds and wonder if perhaps the poor circulation made the toxic chemo stay in my feet longer doing more damage. Just a thought after the fact. Bummed that this week when I saw the MO she said IF the chemo helped prevent a recurrence it was only in the single digits. SIGH. I knew ILC might not respond as well to the chemo, but then I wanted to give it my best shot. On the other hand if it helps 2% and the BC doesn't come back all this pain is worth it As I keep saying the pain is less than the bon Mets my dad and brothers suffered