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Coping with Neuropathy

A few years now in remission, but I still suffer from faint neuropathy in my left thumb. Luckily, it's not every day but still a reminder of the battle wounds. A doctor stated it never truly goes away.

So, how would you describe your neuropathy?
Pin and needles on fire, or something else?

  1. My right foot -toes have it and it is painful for me

    1. I say any bit of possibility is a good thing! I'm glad this is working for you. I may try something similar for my thumb : )

    2. I don’t have neuropathy, but have done this and it feels so good. Excellent tip! Ann (Blood/ Team member)

  2. I didn't know what neuropathy was until I experienced it. I spoke to my oncologist about it and described it as ants crawling and biting under the skin. My fingers go numb, my left foot goes numb and restless legs when I tried to rest. My hands would drop things unexpectedly and little things like opening the fridge door took more concentration than usual. I bang on my keyboard like I'm hammering a nail! It wasn't something that got better with time and although I've heard that gabapentin doesn't work for everyone, it's been very effective for me. I'm on a daily dose and thankfully getting a very restful night now.

    1. Thanks for saying that. I saw three doctors and two didn't understand what I was saying at all. The third finally asked if it was "tingling". That was one word I didn't use, but thankfully she figured out what I meant.

    2. Unfortunately, it depends on who you get that gets it. I think the more we speak out in describing our discomfort actually helps everyone else down the line, but the idea that they were stumped but have book science to know the trials of neuropathy has me stumped by why were they so confused. SMH
      I'm glad someone finally figured it out. Best!

  3. The left side of my left leg and top of the foot it seems are going to be numb for life. It's a weird spot, as in some ways it's good because what do you really use the top of your foot for anyway, but in other ways it's bad because I bang into things all the time and don't even realize that I've almost ripped my pinky toe off. Again. For me it just feels like there's nothing there and then on the edges it's like crossing a border between darkness and light with dusk in-between. Anyone who doesn't feel it - it's very difficult to describe. You know it's there, and your brain expects to feel a certain thing and when it doesn't it makes things weird. Hope you are doing well otherwise. Keep on keepin' on, DPM

    1. my dad had neuropathy in his hands and feet really bad. It got to a point where I didn’t let him cook anymore I did the cooking just because he could literally put his hand on the stove and not feel his hand burning.

    2. I'm doing well my friend and thanks for weighing in. Yep, it's really an odd sensation, but clearly, it causes many of us a lot of misery, even years down the line.

  4. Neuropathy for me started around treatment # 3 ... At first it was limited to my pointer finger and my " social" finger tips . Six months later it was all of my finger tips. Buttoning anything was just impossible without looking focusing For me it was just feeling of being numb. It was not until after my treatments ended did it discover my toes were also numb along with significant toe and foot cramps.

    Currently do not experience any odd feelings or pins/needles in fingers. At this time the neuropathy in my toes feels like my socks are wadded up in my shoes. My fingers improved dramatically and currently have no issues and can button shirts and even thread needles .

    At first my oncologist thought my toes would improve . My foot MD said he doubted it as most likely the nerves were destroyed by the chemo . He was correct. Dennis( TEAM)

    1. Though we appreciate these drugs that manage these cancers they do have some stifling side effects. Some people like me can tolerate the sensation to a degree, but others find this a huge problem. We use our hands and feet to move and do, and not being able to feel normal in these areas can be problematic. I'm glad there's some improvement at least in your fingers. Best!

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