Vent about Permanent Neuropathy

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  • ktym
    ktym Member Posts: 2,637
    edited May 2015

    Anne, sorry to see you here, but as the others have said, you have a lot of people here who totally understand the frustration of dealing with the pain all of the time.

  • MarieNJ
    MarieNJ Member Posts: 231
    edited May 2015

    In my case, I agree with BosumBlues. My neurologist said "time" is on my side. Thankfully, I don't experience pain, just numbness. Seldom I do get a zinger in my feet, but nothing to scream about. My primary doctor told me to take vitamin B6 50mgs. She said vitamin B6 helps heal the nerves.

    Wishing everyone improvements!

    (((Hugs)))

    Marie


  • NATSGSG
    NATSGSG Member Posts: 231
    edited June 2015


    hello everyone - hope this message finds everyone well and enjoying summer...I just wanted to give an update about my icing....it's going great! thus far, fingers and feet are fine after chemo #5, doing chemo #6 tomorrow.

    if anyone has bought the wooden massager at the amazon link april25 has listed above, and started using it, would you please share how it is for you? Thank you.

    I've been exercising everyday - mostly walking along the river doing arm swinging exercises and talking to strangers fishing there about their catch... Twice a week, I go to zumba classes by the Stadium where free classes are offered....I am totally bald headed now...it's as I imagined it to be so I didn't mind it for now...thinking of the light at the end of the tunnel every day

    Once more thing:

    A relative of mine told me that her hands get numbed every morning. Though it goes away by noon, she started using the electronic wave pulse foot massager on her hands She said that she does this every morning by placing her hands over the nodes for 20-30 minutes. Now, her hands  do not experience the loss of sensation every morning. Then it occurs to me that for anyone here who does not want to use the wooden massage mentioned above in my earlier thread, you could use this machine instead. Plus, logically if it works on her, it may very well work for those who have neuropathy as it works on the same principle of meridian stimulation.

    Here's a link to give you an idea on what it is.

    http://www.crazysales.com.au/online-electromagnetic-wave-foot-massager-with-waist-belt-73361.html

    Have a great summer everybody...

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

    Question: does the pain with your neuropathy come and go? My feet are numb all the time, but the pain is intermittent. Sometimes they feel like I'm stepping on sharp rocks. Sometimes there is no pain. Doe yikes the soles of my shoes are too hard. Other times they are too thin and the floor hurts and I need the thicker harder ones.. I keep changing shoes. Is this typical?

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

     Cloes, your description sounds like mine.  Times it feels like Arnold is crunching my toes with his big hands!  Right now, they just feel numb, not hurting but it is just morning and I have not done much walking yet.  Trying to find something to provide relief.  Dang but I went on a day trip last week and walked around Cape May, lordie but that night my feet were dreadful.  I am trying some suppliments to see if they help at all

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

    While I have mostly had numbness, in the earlier days I had the crushed feeling also. My feet felt cold and crushed (but it was Winter then, so maybe the cold was part of that.) Lately, sometimes after wearing shoes and socks all day, I might feel a burning type sensation on the bottoms of my feet, like on the balls and toes where I am numb. I don't know if the light friction of the socks is getting to me, or what, but I know it is time to take the shoes and socks off. Then, I am o.k. again.

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

    eli, do you see any doc about your feet?  I am holding out till my next apt with my PCD to talk to her about any suggestions.  Dang but I never had chemo and only the AL 

    actually relieved a bit to hear that you have the crushed toe feeling~~least I am not nuts

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

    proudtospin, Two years ago, at the onset of my CIPN, I told my MO nurse practitioner about it and she would have referred me to a neurologist, but I said, "They have no cure for CIPN, so other than verify and perhaps label the type of CIPN I have, they can't fix me either, can they?" She mentioned drugs for symptom management, which any doc can Rx to you, so I never took it further. In my case, why? I knew I did not want the drugs. Gabapentin does not agree with me. I asked for some PT. They did order it and I went for about 6x of the anodyne therapy. That's a machine that has had some effect with diabetic neuropathy. Hard to say for certain if it helped me. My acute CIPN phase passed after a few months and the "healing" began, was it the therapy or just TIME? I think probably time.

    Now, almost 2 years out (and summer,) I am not too bothered by what remains. My numb areas have enough feeling to know that they are numb. As dumb as that may sound, that really is about the size of it. I can feel some tactile sensations but I have areas that are oblivious to hot and cold. I don't have balance issues, occasional discomfort but not pain, and I do everything I would do with normal feet, even tho' they are not. So, I am one of the "lucky" ones. Hummppff! (That is my utterance of being sad and p.o.'d just the same.)

    p.s. The crushed feeling? I always said an elephant was stepping on my toes. So, you are only as nuts as I am. (Uh-oh!)

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

    well guess I will basically talk to my PCD in Aug when I see her next.  the crushing feeling in my toes is usually after I have been walking a lot so I am not big on hiking around.  I have a pal who has hip issues so we poop out around the same time.  I took the Gaba thing years ago for a pain in my thigh, thought it just made me dumb feeling so while I likely still have the pills upstairs, not looking to do that

    thanks for your feedback, least I am not the onlyone

  • april25
    april25 Member Posts: 772
    edited June 2015

    I've had several neurologist appointments and he pretty much just tested me and found that there was some nerve weakness in my legs, but said there really wasn't anything he could do... So it does make me wonder why I went (and still have another appointment months away).

    I didn't have pain ever... but every now and then I did get super-sensitive feet--felt like the bottoms of my feet had been rubbed raw when I walked on them--but for brief periods, and didn't hurt if I took my weight off them. I haven't had that problem since I stopped chemo, thankfully!

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

    Bosum- I feel for you but do you think maybe just getting to know some new people, does it have to be a man? sorry but when I joined my gym, I got a double hit.....exercise helps all the aches and my gym has helped me find a lot of new pals.  I just came back from the gym and it helps me with all sorts of things.

    Good luck on the job thing

    I felt the same was about the neurologist guys, they just looked at me and asked if I had had any more cases of vertigo...the foot numbness is more recent but not planning on seeing one of those guys.  My feet feel numb today, even felt that way in the pool when I was swimming this morning

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

    ok, well maybe joining a gym, or walking club or something like that would also help you meet a guy
    I remember a camping trip, picked up 2 dif guys on the same weekend,

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

    oh yes, it was right after I finished a Dale Carnegie class on how to sell.  I did Dale Carnegie on all the guys! It works well, just remember, everyone's favorite thing to talk about, it themselves!

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

    BBlues, I usually don't come out too strongly to tell people what to do or not to do, but I really hope you just say no to the skin punch biopsies. They sound like a crock, and your chance to meet anyone as a result of a biopsy is almost nil. ;-)

    The areas on my feet that are numb are the exact same areas as they were two years ago, but the numb areas do have a tiny bit of feeling in them. So, they have changed but I don't know if I would go so far as to call it real improvement. At least they feel like numb feet and not blocks of wood anymore. Kind of feel like this is the plateau I may be permanently stuck on.

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

    Eil - yes, that's it exactly - my improvement is numb feet instead of blocks of wood or ice. But my feet are still cold all the time. The numbness still runs up above my ankle. Strangely enough it seems to be worse when I first wake up in the morning. I have started trying to go barefoot around the house. I understand that's a no-no since you could hurt parts you can't feel, but I'm trying to pick up different sensations on the bottom of my feet (it's an experiment anyway). My fingers have improved significantly. I started out not being able to do up the zippers on my pants. Now I can pick up dominoes - not quite coins yet, but now that I have fingernails again I can fake it. There's still some numbness but I'm not likely to slice off my fingertips while I'm chopping onions.

    Proud - I'm in a water aerobics class and you're right - numb feet are really weird in the water. I am wearing water shoes to protect them from injury. Never thought of Dale Carnegie for meeting guys. Great idea.

    Bosum - I agree with Eli - nix on the biopsies - even if they're free. OK girl, I'm getting tough - no it doesn't have to be a man. I'm going to send you a PM. In the meantime, there's no snow anymore so you should at least walk. That's free. Hugs.

  • GraceB1
    GraceB1 Member Posts: 213
    edited June 2015

    It's funny how my mind works or in this case doesn't. I had a DIEP two and half weeks ago and while it was rough at first I'm healing well. I just keep expecting my fingers and feet to heal as well. I know I'm getting over the surgery because now the numbness is bothering me than the incisions are. The more I'm on my feet the higher the numbness spreads. Just thankfull I only have occasional shooting pains.

  • mhmama
    mhmama Member Posts: 13
    edited June 2015

    My chemo was in 2008 and the pain and frustration is still there. My hands and feet hurt constantly. I am on all the vitamins and herbs mentioned and then some due to my husband's persistence. I am on Gabopentin (insurance won't cover Lyrica). Hydrocodone/ acetaminophen. I am also on Femara which only adds to the joint pain and throws hot flashes on there as a bonus.

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

    has anyone here seen a neurosurgeon for issues?  I am dealing with nasty back issues and just had a MRI ordered by an ortho guy, I have the stupid foot issues as well as bad back.  A friend who had had several surgeries for back and neck said I should be talking to a neurosurgeon if surgery is indicated and based on stuff I see, maybe that is the road to go

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

    BBlues & Proud, I can just hear the frustration screaming out of your posts and, believe me, I do understand it. So sorry that BC is continuing to take a toll on so many of us. We can start each day thankful that the cancer has been dealt with, but by the end of each day lived with pain, numbness and collateral damage, the thankfulness wears thin. Now we are living with something else that brings us to this thread, ranting at times...how's that for a lifestyle?

    Proud, Your back seems like a separate issue and maybe surgery does merit consideration BUT (throwin' my big But in) keep in mind that a surgeon is going to be happy to cut on you (in the same way that a medical doctor is always happy to give you a new drug.) I have had a couple times in my life where I was offered a surgical "cure" for something, but shied away from doing it. After a few years, both conditions resolved without me ever having the surgeries I was told I needed. It never does hurt to explore your options, tho'.


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

    elimar, thanks and I am researching lots right now.  I see the ortho guy tomorrow with the results of my MRI.  I am looking to find a really great physical therapy place based on whatever showed up on the MRI.   I am resistant to cutting unless all else has been considered

    it is funny, in the morning I am so stifl it is hard to stand to brush my teeth but now with the benefit of lots of heat and some rest, back is fine
    course I am sitting down

  • april25
    april25 Member Posts: 772
    edited June 2015

    Just saw something on the news today about a study regarding back problems, surgery and Pt and it said that PT can really help vs surgery (also helpful, but PT could be as good), but the price seems to keep people from getting it!

    Keep venting here all you wish! You all have tough situations to deal with and plenty of frustration which should be vented somewhere! I wish the best to all of you. At the very least, keep hanging in there. There might be some treatment available down the line!

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

    April, that is good news to me!  dang but I am stubborn and refused surgery for over active bladder and chose to learn to do kegels correctly and well it worked for me!  PT does require work and the right set of docs so that is were I am at now

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

    well working with a new spine doc who does not do surgery. I keep doing the PT at home and with a therapist and it definitely is better but last night I had back spasms again

    so this doc thinks I need an anti inflammatory but since I am allergic to NSAIDS, have not been taking anything, we are going to do some testing as I have god awful feet and can not walk far with out pain

    so still working on the dang neuropathy

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

    Proud - so glad this thread hasn't disappeared & glad you've found a new doc who might help.

    I'm 19 months PFC (9 months post Herceptin only). My fingers have improved enough that I can usually ignore the numbness that's left. I did go to buy new sheets today and was brought up short that - no - I can't really feel the fabric. My toes & especially the balls of my feet are still mostly numb & I'm often aware of numbness up to mid calf. I've been trying to go barefoot sometimes just to see if I can feel the difference between carpet, cement, lawn, etc. Well, sometimes, sort of, maybe. I feel fortunate that I don't have much pain. I'm still taking B-6 and B-12. I'll go see the neurologist again after the 1st of the year if there no more improvement.

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

    minus, I am lying on the sofa and felt like a creppy feeling up my ankles so hoping for help from new doc. Found this guy as he is a pain specialist so well let you know how it works out

    have not been taking Vit Bs but have been adding turmeric and ginger to my suppliments, not sure it helps

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

    Proud - do report on turmeric & ginger if you can make a deternination.

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

    Minus- I am not seeing anything from the turmeric and ginger yet but sort of figure I will finish the bottles. It is to cut back on inflammation and arthritis. I have a doc apt today and plan on asking him his thoughts

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

    One thing I hate is waking up every morning with the the jolt of "where are my feet". Intellectually know they're there, but it seems waking-up from sleep, I'm never quite sure.

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

    Bosum - does that mean you have feeling coming back? So is what we wish for is a toss? No feeling, or feeling & pain. Ugh.

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

    Haven't posted for a while...because it's the same 'ol thing, but I do want to remark about something kind of weird:

    I was never one of those who had foot cramps or spasms, but several times over the past few months I have felt like I was this ][ close to having a foot cramp. Makes me wonder if the nerves are not serving the muscles properly now in their deadened state. I think I did read that faulty nerves could lead to "muscle-wasting" (and I know chemo did do the muscle-wasting on me, which I have never quite rebounded from) but I don't want the fresh hell of foot/shin/calf spasms. No thank you.

    Has anyone one else noticed cramping/spasming for the first time after getting their CIPN?

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