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Apr 15, 2019 12:33PM
Sweetpea, everything that you described can be caused, directly or indirectly, by neuropathy. I have it, too, caused by chemo, and I've had it before, about 15 years ago. (The last time the cause was unknown, so the doctor just called it "idiopathic," which is doctor-speak for "haven't got a clue.") Like you, I have some numbness and tingling in both feet, and I have some in my hands as well. I've been able to get rid of the cane that I had to use for a while, but I'm still clumsy and slow, and going downstairs is still a bit of a challenge. I'm not having cramping this time around, but I did when I had neuropathy before, so I know what you are talking about. As for your knees feeling a little "off and uncomfortable" and your hips feeling "iffy," I don't think those things are likely to be a direct result of your neuropathy, but people with neuropathy often move differently than they used to in an effort to maintain their balance and compensate for weakness and other effects of the neuropathy. If that's true of you, you may be putting different stresses on your bones and muscles than you used to, and that in turn could explain why your knees and hips are bothering you. The only way to know for sure what's going on is to consult a doctor or physical therapist who can watch you walking and coming down stairs and so on, and then tell you if you are doing something that could be stressing your knees and hips. For whatever it's worth, I was told to focus on moving as normally as possible at all times, which meant, for example, that I had to pay attention to keeping my feet a normal distance apart as I walked rather than spreading them farther apart in order to make balance easier. At first, I found that hard to do, but I'm much better at it now.
As for exercise, it is sadly true that it can't heal nerve damage. But what it can do is help you function better with whatever degree of nerve damage you have. Any exercise that you enjoy will help, so if you liked the stationary bike that you used while you were in physical therapy, I think getting one of your own would be a great idea. I have one and I love it. I have also found it helpful just to practice whatever movement is giving me trouble. For example, I try to practice stepping up and stepping down a few minutes every day, and that has helped me move more confidently coming down stairs and stepping off curbs. (Of course, stepping up and immediately stepping back down on the stairs looks a little weird, so that's one exercise I do in the privacy of my own home. That way only my cat thinks I've lost my mind.)
On the whole, it sounds like you are doing the right things to minimize the damage caused by neuropathy, and you are asking the right questions. If you continue to have cramping, you might ask your doctor -- if you haven't already -- for a recommendation for something to help with that. And, as I suggested above, if your knees and hips continue to bother you, it might be a good idea to have someone watch you move to see if you might be unintentionally moving in a way that puts new stresses on them.
Finally, one useful thing that I learned the last time that I had neuropathy is that nerves do heal, assuming you are not continuously annoying them, but it takes a L-O-N-G time. Nerves heal so slowly that you will find it difficult to detect any progress if you are comparing today to yesterday or this week to last week. Try instead to think about how you were doing a couple of months ago. The chances are you are doing a little bit better now, and a couple of months from now you will be doing a little bit better still. And one day you may notice your feet are not numb anymore, and you haven't had a cramp for a while, and something that you can't do now, or can't do well, is pretty easy. That day might not come this year, but if you can avoid new damage to the nerves, so that they have a chance to heal, you should get there eventually.
3/8/2018, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2-
4/24/2018, DCIS, Left, Stage 0
4/24/2018 Lumpectomy: Left
5/15/2018 Lumpectomy: Left
6/9/2018 Carboplatin (Paraplatin), Taxol (paclitaxel)
9/26/2018 Whole-breast: Breast