Neuropathy and shoes

[Lucy]

Over the summer when my toenails started to lift I stopped wearing conventional shoes and only wore open-toed slip on shoes and flip flops (the flip flops were my "dress" shoes ). Two weeks ago I returned to work and had to start wearing conventional shoes again. I was only working 4 hours a day but by the end of the day I had significant pain in my legs and feet. I would have indentations in my feet from where the shoes had been because my feet had swollen so much during the day (this had happened over the summer and also contributed to me not wearing conventional shoes). The pain would continue long after I took the shoes off to the point it was waking me up at night. I went to the podiatrist this past Monday and I used the fact that he cut my toenails all the way back as an excuse to wear my flip flops to work.

My question is, has anyone else experienced this? If so, is there any relief or does it go hand-in-hand with the neuropathy and won't get better unless the neuropathy does?

[BonnieR]

Hi Lucy! I noticed you haven't received any replies and I didn't want you to feel unloved!
I actually don't have anything constructive to offer but you've already figured out the problem. Now you need to seek some professional help. What do your doctors have to say?
Are you on other meds or have health conditions that could be contributing? Circulation problems?
Have you researched it on other sites? American Cancer Society?
It must be greatly annoying and you don't want to aggravate it further.
I'm lucky to live in California where I can wear sandals much of the time because closed shoes just bother me, in general
I hope you receive more useful replies. Meanwhile, keep the faith

[Gerri]

Hi Lucy,

I had significant swelling in my ankles and feet during chemo so my onc put me on Lasix. I also had neuropathy that made my legs and feet feel numb and tingly, yet painful at the same time. The lasix helped some, but my feet were still swollen at the end of the day. i am 9 years out now and I still have a tiny bit of tingling in my feet but I have learned to live with it; most of the time I don't even notice it. I still take Lasix for swelling but really don't know if it a lingering side effect or something I would have had anyway.

I hope your neuropathy resolves soon and you are able to wear conventional shoes again - that is, if you want to . Best of luck that to you.

[Lucy]

I don't know that I've had any swelling except when I've worn conventional shoes. Ditto for pain. My biggest frustration is the weakness in my legs, which seems to have gotten worse since I started taking the anastrazole. And I should point out here that even with it seeming worse now than just a few weeks ago, it's TONS better than it was when I was finishing up chemo and for two months after - no comparison. So while I feel like I'm whining here, I do recognize that it could be much, much worse. In any event, the nurse at my doctor's office said the anastrazole doesn't cause muscle weakness (information from pharmacy says different) but she made an appointment for me with a neuro oncologist for this coming Monday to see what options are available to me. The podiatrist I saw offered me a couple of medication options but I declined based on the possible side effects being worse than the discomfort I currently have. I'm not sure what else the neuro oncologist could offer but I guess I'll give that a shot . . . couldn't hurt, right?

P.S. Lovely picture in your profile Gerri.
P.S.S. I totally plan to steal the quote from your signature too.

[BonnieR]

Please don't think you're whining! You have every right to be concerned and sharing it
I,too, have received incorrect drug info from nurses. It's always best to look up things oneself to be certain as they can't know all the SEs. I think the neuro oncologist is a terrific opportunity to get a handle on what's going on. Because obviously you have symptoms that could benefit fro expert intervention
I hope for Christmas that you receive the relief you seek!
Keep the faith

[StephN]

Hello Lucy -
Welcome to the chemo side effects club!

I have had some difficulty with the foot swelling and had to get rid of a lot of nice shoes that I thought I would not be able to ever wear again.

I think some of my foot "swelling" was also from being in the house so much and wearing slippers that allow feet to do what they want. My left big toenail became a chronic problem and has never become normal, making it necessary to buy shoes with a larger toe box and not too pointed. I try to keep some sort of "regular" shoe on and only wear sandals in the heat of our short summer here.

What I have found is that I need more support and a gel or other soft interior and I can wear shoes for hours on end if they meet certain needs that my feet now have.

Shoe fashion plate days have been long over for me!

[Pat94]

I have had a problem with my big toes pointed up all my life and the widest part of my feet is across the toes so women's dress shoes are very problematic for me. I have discovered men's shoes have deeper toe boxes than women's so I always get men's sneakers. I also discovered that elevating the heel a little, gel pads or inserts, helps push the toe down. Now I have badly bruised a big toe while on warfarin so wearing shoes at all is an issue. At home I wear socks, don't know what I will wear when I return to work. Mostly, something I can easily slip on & off so they can be off while I am at my desk. Good luck. If you find a dress shoe that has a very deep toe box please post it. Thanks and good luck.

[BonnieR]

Have you tried SAS shoes? Pricy but very comfortable. I live in their sandals and also gave a pair of closed toe. They have a lot of widths too
Keep the faith

[Lani]

Have you tried crocs? Both the classic clog-like style and many of their other more"fun" styles. Materiaal is a bit like rubberized egg white so very"forgiving"

Also authentic scandinavian wooden clogs (leather top) come in sandal styles too and a shoemaker can use a 'shoe swan" device to "bubble out the leather over any "protruberances" to make your shoes fit your feet rather than try to make your feet fit your shoes, injuring them in the interim.

Scandinavia clogs have a rocker bottom which helps many with neurologic problems (balance problems, sensory problems etc) walk with a more normal gait by giving them more feedback (including auditory if you want to!) Especially helpful in those with MS, Parkinsons etc

Expert fitting of true Scandinavian clogs available in Portland, periodically in LA or Chicago/NYC-- fitter travels to "restaurant shows" and sells to lots of people who spend hours on their feet eg chefs, surgeons etc

Not here to advertise anyone... if curious, post request for name of company doing the clog fitting (they get custommade clogs made by special factories)

[Lucy]

Several people have suggested crocs but I haven't tried them yet. I got some dearfoams which are pretty comfortable, other than my feet feeling weird when they're on (but they feel "weird" if I only have on socks or anything that covers my feet). They have give but Friday I had a treatment and the friend who went with me wanted to see my toes (the podiatrist had cut the big toenails all the way back and she wanted to see that) and my feet had indentations in them because my feet had swollen in them, which had surprised me. Also, when I put on any shoes that have any height to them at all, I get lightheaded and dizzy as if I were trying to walk on stilts or something. We're talking tennis shoes with a thick sole. It improves some after a few minutes but not completely. This whole thing is just so weird.

[Colleen]

@StephN I am curious, are you currently on any maintenance program? If so what drugs? If not I hope to be like you!

[StephN]

Hello and welcome Colleen! I hope you live a long and fruitful life.

No, the only "maintenance drug I am currently on would be Zometa twice yearly.

I do take a few supplements, but those are not especially meant for the Cancer side of me, but the aging side of me ...

[Colleen]

@ StephN do you feel the vaccine trial were involved with is a significant variable to your NED over the past several years? I have been invited to a vaccine trial at UW, debating it due to expense of travel from Southern California to UW.