Vent about Permanent Neuropathy
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tried the drunken raisins but they were tooo nasty for me! ha! didn't take them for long enough to tell if they worked...good luck!
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Yeah! I tried those drunken raisins, they were awfully foul tasting! But I never really cared for gin, anyway.
notbuyingit , yes! I am so glad you found topricin! I love it! I wish I had a vat full to climb into! I sent my mom some too, cause she has very messed up arthritic feet, and she loves it! I buy it cheaper on amazon. I tell everyone about it! I have been using it for a year now, and the relief is almost instant for me. my manfriend thinks it is woo, but he won't let me put some on him,and the amount he uses is so small,no wonder!
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Hi!
I'm new to this topic..I finished chemo in July, had bmx in Aug, going for exchange Dec. 10th..My neuropathy pain in my hands and feet has not stopped..Does the topricin help the hands too? I'm still taking garbpentin daily..would love to have an alternative..
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Andi67, I have your style of CIPN too, down to my right being a bit worse. Also have the feeling of normal feet, when they are still and not touching anything. Also, my feet loved going to the beach. I will add that getting poor sleep seems to contribute to my "bad days" of CIPN, along with stress. Haven't noticed food triggers yet, but will be paying attention.
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Yes, Angleface! It helps everywhere you put it, for me anyway. You know all the things like bengay and icyhot etc? Those things don't do a thing for me. I would sleep in a vat of topricin if I could. It doesn't CURE it, it just makes it feel better.
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Thanks tomboy!
I'm gonna try it this week!
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Hey Bosum - great news that you're having some improvement. Please do keep us posted. I stopped all supplements a couple of weeks ago to prep for a Cat Scan w/contrast last week & a colonoscopy this week. Don't know if it's made much difference in the neuropathy but I'll start back next week after a 4 week break so perhaps I'll be able to tell some difference.
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Bosum, yeah those dang colonoscopies are no fun and easy to make excuses for delaying, glad yours is over and the nasties removed.
I like your yoga teacher! visualization is a big help to me
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I did Reiki twice and the first time it was amazing to sense her hands and yet she was not touching me
I felt very emotional and tears came to my eyes~~
maybe I should do it again~~0 -
I should do it again, I used to do massage but stopped when I got an allergic reaction to the cream she used and have not really done much since (I tried taking my own lotion and the massage lady was sort of pissy~~)
will need to do the reiki again
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Tomboy - I tried icy hot too in a moment of desperation. I was afraid that it might exponentially make my feet worse. I'm not sure that it did anything.
Bosum - I recently visited my closet of 4 inch stilettos and fondly took them out of their dust bags to remember the frivolous ornaments, colors and styles, gorgeous that they are. I can't wear them. But I can't bring myself to part with them. It was bad enough when my feet changes sizes post-pregnancy and I had to ebay my designer collection. Not again...
I'm interested in knowing if there is a diet recommended (please not let it be more kale) for eliminating the neuropathy / food triggers.
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well I switched up my diet at the time of diagnosis, sorry but I found kale to be a great source of vitamins but I also do lots of dark greens and beans. No red meat and lots of fish
can not tell you if it has helped but feel it sure did not hurt and good for all sorts of health issues
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So, what's up with you venters? No posts in 2 months...did everyone's CIPN just clear up? Ha! I didn't think so.
I would like to share my good news...
My CIPN is down to about 15% numbness in one foot and 20% in the other (that's down another 5% since my last few posts in the Fall.) I had plateaued there in Fall, but just in the last couple weeks, I noticed that my super-dead right toe seems to be waking up; and my left foot feels more normal in a shoe now. I know these are random things, but I do feel improvement still going on after 1 1/2 years. I could feel hot bath water just a little in some of the formerly dead zones.
I credit the passage of time for this, mainly. But there is one other thing. My feet seemed to be a bit worse when the cold weather season approached. They would sometimes ache when I sat at the computer, so I got out an old heating pad and threw it under the desk on the low setting. That worked out great and my feet didn't suffer as much. My overall improvement comes after doing that for about 2 weeks. I thought I would mention it in case any of you other cold feet people could benefit from doing something like that.
I think to keep the feet moving, to keep them warm and keep the blood circulating, gives them the best chance to heal. Or it may just be over time...at a snail's pace. I don't check in to BCO as much as I used to but, maybe the next time I do, a few other long-time sufferers might be a bit better too. Good Luck all!
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Eli - thanks for your post. I can't begin to give percentages but I'm seeing a miniscule improvement. 14 months post final chemo, 4 months post Herceptin, 18 months post ALND surgery, 11 months post rads
Fingers still numb on the ends. I can now sort of pick up coins. That's the best news since I was finally able to do the zipper up on my own pants. I'm working with an occupational therapist for my fingers - using Theraplast Putty, doing exercises with super large clothes pins of various tension strengths, trying to sew a silly felt bird (oops). She told me to play dominoes every day. (yeah sure...)
The balls of my feet are still numb & the numbness still goes up my calf to the sock line, but like Eli, I can occasionally feel more in some of my toes. Working with a physical therapist to regain some balance, muscle strength, stamina. I'm getting cramps in my arch so something's happening. Interesting that my right foot & hand both seem to be in worse shape than my left. That's also the side that lost a big toe nail, and my dominant side. And i can balance better on my left foot. I wonder if the poisons moved more quickly to my extremities on that dominant right side since the blood flow was originally better? It's also where I had the ALND surgery & the radiation, so possible more nerves were damaged by surgery & rads in addition to CIPN?
Sometimes I'm not sure if I want more feeling. What if that means pain, which has been absent so far?
I agree - the cold is a problem. I have a heated throw since my hands and feet are cold when it's 75 degrees in my house. My son gave me Heatable Hot Boots shippers for Christmas. Lovely shaggy soft things. The soles have something like buckwheat pellets infused w/lavender & you toss them in the microwave to warm. Great to wear at the computer, or as long as you don't have to walk
Hope everyone else is doing OK.
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Upped my gabapentin dose. At first I felt more relief from foot pain, but now it's back to about the same. Makes me tired. But so does the weather.
Eli - I think time heals has merits! I met with my PS today and was talking about surgical site nerve pain. He said it takes 2-3yrs post surgery to DX post mastectomy syndrome (chronic permanent pain), since regular healing can take that long. Maybe it's the same with neuropathy. Here's to hoping we are just all slower healers.
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Hi Ladies,
Yes, it's been awhile since someone posted on here.
My update is that I still feel numbness on the balls of my feet too. I am also still feeling the numbness around my face a bit. I did get slightly better. The tips of my fingers are very slightly numb. Interesting, I went to my new internal doctor yesterday (since my former one retired). She gave my husband and I a whole bunch of test. One test included a test for nerve damage. You put your hands and your bare feet on this mirrored type plate and it measures nerve damage. The scale goes from 1 to 6 with 1 being no nerve damage. My hands measured a 1 and my feet measured a 6. She told me to take 50mgs of vitamin B6. She said it helps repair nerve damage. I took vitamin B6 all during my chemo and was told by my MO that I was able to stop when the chemo stopped. Well, needless to say, I'm going to start today with 50 mgs of B6 to see if it helps it along. I don't have any nerve pain, just numbess.
I do believe as time goes on and we get further and further away from chemo, things will get better.
Stay warm!
Marie
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very encouraging, ladies! my numbness/pain is still the same - but i have been away from the pool for 2 months since last recon surgery & i know that helped me quite a bit - especially the bubbler jets on my feet! Can't wait to get back!
something recent i found interesting - i have had the flu/sinus & went to the doc finally for some anti's & he also prescribed Prednisone, which i guess is the new "it" drug - steroids for everyone. Anyway i took the dosage for the first day & not only did it make me feel funky but my fingertips & lips started to feel numb - like the nueropathy! freaked me out & was not one of the 100 possible side effects listed. I did not take it again.
maybe a coincidence - but thought i'd warn you - anyone else take this?
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I would not question it being the prednisone but your antibiotic. Which one were you put on. The group that Cipro, Avelox, and Levaquin..... which is known as Quinolone there is the possibility of nerve damage.
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KittyDog is absolutely correct. Thanks for posting. I've irritated several docs because I refuse to take any of this family of antibiotics. The docs always say, oh well it probably won't cause any problems. Hmmmm. I go out of my way to avoid anything that might possibly make my neuropathy worse.
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Avelox, did make my neuropathy worse. They didn't add the warnings for that until it was too late for me.
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notbuyingit, I spent much of last year on prednisone, I had nasty sinus issues and it was the only way I could breath till I had the surgery.
The side effects are down right scary so be sure to read them and follow the dosing instructions carefully. It is used for folks with asthma as well as sinus issues and I actually take a small dose prior to having certain tests like CT. It is a miracle med but also must be followed carefully. I have never seen a connection with the neuropathy
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Bosum - how GREAT that you've found a doc who listens and is doing follow-up tests. So do we hope for herniated discs? Ugh - but at least you'll know. I read a research paper, I think out of Stanford Univ?, anyway this doc had done a study about lymphadema education among physicians. Over 80% said they had around 15 minutes in a lecture some time in their 5-15 years of medical education. Anyway, I think the same holds true for CIPN. It's not supposed to happen usually, so.....
There are quite a few of us who watch this thread so you're unlikely to have a post dangling out there. I try to follow Eli's example and estimate progress to post periodically - but venting is good too. And most so us are interested in what's going on with others in a similar situation. Please let us know what the tests discover.
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Good to see others checking in. Face it, our symptoms don't change from day to day, but over a month or two, most of us have some kind of news.
I'll back up what MinusTwo said...I want know how it is going for others and reading it here is going to keep it real, contrary to the patent spiel you are going to get at the oncologist's office.
That is interesting about the antibiotics. I had no idea about that. I avoided taking some Cipro during the time I was having my chemo, but only because I started to have an allergic response to the Cipro. Looks like a dodged one of the CIPN bullets there.
My personal experience in taking Predinisone for a very short time is that it was unremarkable. No CIPN changes due to that.
MarieNJ, I took B6 during chemo and the year following it, but for the last 6 mos. I have opted for B-complex gummies. Several; times I went without taking either for a few weeks and I do think my CIPN was worse during that time. Coincidence? Maybe, but I seemed to improve again shortly after I renewed my supply. After reading your experience, I'd kinda like to see how my feet would be on the mirrored plate! (I'm just too cheap to pay for it!!!)
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Oh Bosum - sorry about the bad day. It your feet weren't hurting I'd tell you to go kick something - but maybe not a good idea. Hope tomorrow is better.
Eli - I'm still using B-6 & B-12 that I took during chemo, but will go to a B complex when my stock is depleted. I haven't taken any supplements (vitamins) for 3 months since I wanted a "clean" slate when they did the last CT w/contrast and bloodwork. Planned to start again 2/1 but somehow I've lost the habit.
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has anyone accidentally taken a double dose of gabapentin??? I think I did. Felt dizzy and drinker than a skunk. Really surprised that it would do that to me, but I can't figure out what happened. If I didn't take a double dose, then could it be gabapentin taken at the same time as zofran? Makes no sense. Feeling better now but made for an interesting evening last night
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I would not be too worried but of course tell your doctor what occured4
I took a very lo dose of it for a while, stopped when it did nothing but make me feel stupid and I had a hard time waking up, googled it and some folks take HUGE doses of it, it did not think it did anything
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BB, wow never noticed that warning. I was taking it for leg pain that went away when I changed my statin med, wierd
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BB - mine does not have that warning. Strange.
No further med mix ups lately my friends! Clear headed Valentines wishes to all!
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maybe because it is not a med to go off cold turkey, but requires tapering.
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BB so happy your neurologist is being so thorough, I hope they find something they think is reversible that they can treat.
Elimar, good news that things seem to be improving.
I'm in the group that has permanent neuropathy. I need to come and vent sometimes, other times I just concentrate on living with it best I can. I haven't posted as much lately because that is where my head has been at I guess. The cold always makes it worse so I just keep looking forward to warmer weather in a couple of months
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