Vent about Permanent Neuropathy
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for a time, I was getting foot and leg cramps, tried to eat bananas but not fond of them for every day! if you research, you will find other foods hi in potassium like potatoes! I sort of stopped pasta in my diet and starting eating potatoes. Also dried apricots are good to get your levels up. Not sure but not having the dang cramps anymore
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feel like i have ants crawling on my feet sometimes. Is that a feature of my neuropathy
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do not know but my feet are just nuts, have found the pool and exercising there is a big help
my back doc had me tested for nerve damage in feet and legs but nothing is wrong there and he thinks all will resolve itself, yeah sure
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F.Y.I all you potassium takers: Unless you have a disorder or are on meds that cause you to excrete your electrolytes like crazy, then you are probably getting enough dietary potassium. However, if you are not getting enough magnesium (and this is more likely) then you will not be able to utilize your dietary potassium efficiently. I urge you to investigate this for yourself mainly because too much potassium is a bad thing.
As for my feet these days, maybe a 1% improvement in each. I'll take it!
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Minus Two,
Saw on another forum that it is your Birthday today, so.........................
Happy Birthday to you
Dsgirl
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elimar-- congrats on the 1% improvement. Hopefully that'll continue, even if it's too slow!
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Thanks dsgirl but it's not until 8/25. I'll celebrate any extra days tho.
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The motor nerves are like cords that can be spliced together and grow into placeThe sensory nerves are more like fine hairs or the tiny roots on a plant
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Just found this thread today - CIPN sisters!
I am 3+ years out from chemo. My neuropathy has not eased at all. It did not present until about 6 weeks after I finished chemo. It is mostly in my right foot and leg, and in my right hand. Sometimes the ball of my foot will get a horrible stabbing pain that feels like I just stepped on a nail. The cramping is not as often since I started on Gabapentin (that helped a lot). The only shoes I feel truly secure in are my tennis shoes. I can no longer wear my beloved Clarks clogs, or heels, or sandals. I cannot keep them on my feet, and I cannot risk falling. I have balance issues. I do not use a cane, but we have installed grab handles & rails around the house. I am no longer allowed to carry laundry baskets up/down the stairs. My DH and my son look out for me and take care of household tasks I cannot safely perform. I always was a very physical, active person. Long walks with the DH - not happening. A lap around the shopping mall and I am done walking for the day, so if I have to walk somewhere in the evening, I take it easy during the day.
I do not see any abatement. Whatever the tiny % occurance of neuropathy (it was the TAXOTERE! MY MO ADMITTED IT!) was a side effect, well it's 100% for me. BUT ... I'm here.
Debbie
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My left foot gets electric shock like jolts that come out of no where. Some days the soles burn. Other days are ok. I wear sandals as the shoes pressing on my toes hurt even though the toes are num
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I at times I feel like Arnold is squessing my poor tooes
I have started using a cream I found at whole foods called Topician or something
is seems to calm the nerves, not a pain thing but calming
it lets me sleep!
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Proud - when you get a chance can you check on the name of that cream? I can't find the name you listed on the www. I did find something called Topricin Foot Therapy, but not sure that's it.
Girlpower - sorry you're here but welcome. It's great that your DH & DS have taken up the slack. Doesn't help wit the anger that we can't do what we always did.
Chloe's mom - I'm now 2 years PFC and 1 year past Herceptin only. For the first year I only wore my SAS sandals because like you, my toes hurt w/any other shoes. Now about the only shoes I wear are Travel Times by Easy Spirit. Girlpower, if your feet aren't too narrow you might try these. Covers more of your foot than clogs & lightweight.
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Dr at Hopkins is prescribing a compounded pain cream. I will let you know how it works. Has stuff like Advil and gabapentin in it. 4 different medications
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Minus, that is it! let me know what you think of it. I gave some of mine to a woman at the gym, she has fibro and a bad hip from a bad replacement and uses a walker and she liked it
need to hit up Whole Foods and get a refill
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Hello everyone,
I discovered this thread recently and have been reading the posts with great interest. I developed neuropathy in the feet ten years ago after treatment for IDC breast cancer with triple negative receptors. I had Taxotere for three months during chemotherapy and developed a strange numbness in the feet shortly after I ended treatment with radiotherapy.
I saw my GP, oncologist and two different podiatrists and they all said it was peripheral neuropathy. The oncologist said it was definitely caused by the Taxotere and there was no cure. The GP and the podiatrists also said there was no cure.
Unlike many of you posting, I have no pain, just an uncomfortable feeling under the soles of the feet, making them feel as if they are rough and dry, whereas in fact they are very smooth to the touch, well moisturised and cared for. I use CCS Foot Care Cream to keep them in excellent condition.
I do not know if there is a connection but I have developed osteoarthritis in the big toe of one of my feet.
I was interested to read about the foot therapy cream you are using. Is it a good moisturiser as well?
Good luck and best wishes to everyone.
Sylvia xxxx
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Hi Sylvia, sort of think we have similar issues, the cream I am using came from Whole Foods and it is softening my feet. I actually wonder if the feets are too soft!!
any way the cream I found is called Toprican or something like that, it claims to be approved for neuropathy and diabetes as well, it just sooths my feets and I refer to it as calming the nerves and makes a big dif in going to sleep.
best of luck, I am sure some others have tried stuff
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I don't really have pain either, just no feeling or weird feelings like rice in my shoes. This goes 1/3 of the way up my calves. The thing I hate most is waking up almost every morning and thinking "oh no, I don't have any feet anymore". I'm not sure how this panic wake-up thought started but not a good way to start the day. Below is a link that i think is the product Proud is talking about.
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Minus, have you tried the cream? I need to buy some more!
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No Proud, not yet. There isn't a Whole Foods very close and I'll be darned if I'll run any errands except strictly urgent in this 100+ degree heat. I've put it on my list for the next time I'm doing errands - which is usually only twice a month.
BTW - I really think that the water aerobics is helping. I can feel pin pricks that I couldn't before. Still, not sure if that's good or bad. I hate being numb, but I feel lucky not to have pain and wouldn't want to move in that direction.
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Minus, water aerobics is good for all! so glad I have a place to do it regularly. Been working on a stupid back and it has been helping me avoid surgery!
try to stay cool
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Proud - I'm enjoying lurking on your CRAZY thread. Hard for me to keep up, but glad you started it.
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oh thanks but I did not start it up! think it was Slow who started it up and yeah, it is a hoot! best thread ever!
join in, I am sure you have crazy thoughts at times!
ok I am beat, this trying to be healthy thing is a lot of work!
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Hi guys! I have been using Topricin cream for two years now. I swear it works, my boyfriend swears it doesn't. My mother loves it when I gave her a big jar. ALL of the topricin creams work. They didn't stock the foot cream kind when I first started using it. It doesn't cure it, of course, but it makes it feel soon much better. Much cheaper on Amazon, but I first found it at the vitamin shoppe. I would bathe in it, if I could.
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Thanks for the recommend Tomboy.
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I have been lurking here for awhile too. I don't have pain, but am kind of pin prickly and numb. Sometimes not too steady on my feet.
I happen to have Topricin, which I use for lower back pain, it was recommended by a massage therapist a couple of years ago. Tomboy, are you saying the regular cream can work on the feet? I think I may try it.
Does anyone know what ingredients are different between the regular Topricin and the Topricin foot?
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Sylvia and Debbie, sorry to see more people joining us here. I do hate Taxotere with a passion.
Debbie that saving yourself for that one walk thing and family having to care for the things you aren't safe to do is exactly where I was at 3 years.
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I'd like to give the cream a try. No Whole Foods, so I looked it up...Topricin is at Walgreens, CVS and quite a few more places, even WalMart. I'm not in pain, but it does say "promotes healing" so I'll give it a whirl. Too bad I could not have tried it sooner.
The only thing I have been consistent about using is Vit. B complex. My improvement is soooooooooooo sloooooooooooooow now, I can hardly even tell month to month, but I do seem a bit better than I was in the Spring. I can feel blades of grass this year. the "stem" of my toes actually did get some feeling back, but the pads are still numb. I think it is difficult for any new nerve growth (or repair) to take place in the more calloused areas.
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gee did not see it at Walgreens but thanks for the info, just spent for a jar at Whole Foods, I know my Ws would order it for me if it not in stock
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I had not been so steady about taking Vit. B over the last few mos., but having been more regular lately. I think it still helps, even after 2 years.
My latest update is that 10-20% of my feet (frontal areas) are still numb...
...but the good news is that even in my numb spots, I noticed that I have some feeling in them. I mean everywhere really. No longer do I have any spots that are totally sensationless. Some "numb areas" have only 20% of feeling, but some have come back to 70-80% by now. They just feel like weird feet now, but at least they feel like feet.
I know from some of you before me that I can improve after the 2 year point and I have every indication that one day, with a little luck, I might have my old feet back. I am full prepared for that to take another year or even two. My improvement really has been at a snail's pace. It has gotten to the point where it is just slightly better from month to month. Week to week, I cannot notice.
Not everyone can get full feeling back, I know. However, there are some that do so why not me? (That's how I always project myself into the best case scenario. I have done that thru' 2 cancers already so too late to change me now.)
I do have more aches in my feet now (like arthritis, but different) and I like to think it is some new nerves learning how to interpret things.
Just wanted to write this out for those coming in behind me. There is some hope for reversal. Although I was not affected on 100% of each foot, they felt more like blocks of wood when I began, but I can feel blades of grass now, I can feel sidewalk, and carpet texture. A lot has come back. I will say this again because I cannot say it enough: I think anything that promotes blood flow promotes healing. Figure out how you can best make that happen and then get ready to wait. The rest is time.
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That is great news B-Blues! I was on a plateau earlier this year, but also feel like I've gotten a bit more feeling back lately and I am 25 mos. PFC. I have now read several posts where the healing continues past the two year point, so don't lose hope ladies. Agree about the Vit. B.
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