Vent about Permanent Neuropathy
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ginger, have you done any pt for your balance mine has improved with pt
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my pt place sets up obstical courses for me to practice inking my dumb feet
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I was prescribed Metanx (a b complex that is bioavailable, so works better), it's not cheap (about $40 per month), and took about 6 months for me to notice a difference. In fact, I didn't think that it was helping at all, but I went off of it, and within two weeks my neuropathy pain was back full on, I've tried to go off of it several times, but every time, pain and numbness gets worse (way worse) so I'm back on it. You have to have a prescription, and it's mail order only, but It works for me, nothing else did. https://www.metanx.com/ here's a link for info. My PCP now prescribes it for me.
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Linda - thanks for sharing. How long have you been taking it? Does it reduce the numbness or just address pain? Did you have any side effects?
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MinusTwo - it reduces mostly the pain, but I do notice less numbness when using it also. So side effects from the metanx. Everything else they tried me on was aweful, gabapentin, the anti depressants - didn't help with the pain/numbness and made me feel like a zombie! The only thing is that you have to take it for a while before you notice any difference, and that insurance does not cover it so it's about $50 (including shipping) out of pocket a month. But I've decided it's worth it.
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Thanks Linda. I'll bring it up at my next MO appointment & if he has no thoughts, I'll go see the neurologist.
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another good topical is Topricin - they have it at Walgreens - watch for sale!
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love topricin i found it at whole foods,
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Just a personal observation coming here - I have taken biotin since I got diagnosed. It's supposed to help with hair and nail issues which I had plenty of. Last month I ran out and didn't get more right away. Usually my neuropathy is numbness with shooting pains once a month. After I ran out of the biotin I was having shooting pains 3-4 times a day. Went back on biotin and they calmed down after two days. I don't know if this will help anyone else but it works for me. I also take a super B complex pill.
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started biotin a while back,as ,y nails were badly splitting but did not see any help on the nueropathy or help on the nails
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Like Bosum, I'm 2-1/2 year PFC, but only 1-1/2 years post Herceptin. I still take 5000 mcg Biotin daily. It seems to help the hair grow on my arms (ugh) but don't know that it's really helping my nails anymore. I was considering dropping it when I finish the bottle, so I'll be interested to see if my neuropathy changes. I also take 100 mg of B-6 and 1000 mcg of B-12 every day in addition to a standard daily vitamin.
I was becoming resigned to "this is as good as it gets", but a therapist in CA who is a friend and only works w/hospital patients said I should continue to stimulate & massage my feet all the time for more regeneration of the nerves. On the other hand, my feet are numb blocks of ice but I don't have pain - so maybe i should leave them alone!
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Also, 2 1/2 years out from chemo here and I noticed small but steady improvements from about the six month to two year period. Now, I think I still continue to improve, but it is in tiny, partial ways. When I occasionally have pain, I think it IS nerve regrowth. It may not be that for everyone and obviously it cannot be that for people having pain all the time.
My feet are quite good now at feeling textures. My feet love to graze along my microfiber sofa. My carpet feels fuzzy, Sidewalk feels like sidewalk. However, I always test my feet out with HOT bathwater and the toes just do not have a clue, but other parts of my feet are not very affected so there goes my big chance of a career as a mystic shaman hot coal walker.
Yes, yes, yes, if you are not in bad pain (and maybe even if you are) I do think that feet need stimulation, either of massage, motion, electrotherapy, hydrotherapy, whatever. I can tell you that on days when I go for a walk, my feet feel more alive. That is in 100% of instances for me. In other words, I have never gone for a walk and then felt worse. I highly recommend foot stimualtion in whatever form you are able to do. I am a fan of B-Complex as well. It did seem to make some difference to the positive when I take it regularly.
Good Luck to all of us hanging in there after the legendary two year window has passed. We'll never get back to "good as new" but a bit more improvement can still be coming our way. Just on this thread there have been many to report positive changes even after two years. So, it is possible!
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Elimar - Thanks for the thorough update. I just hope that stimulation doesn't cause nerves to regenerate that will then cause pain!!
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walking makes my feet hurt
Gonna try orthotics
Basically I walk very little
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So weird. I was talking a long walk with my daughter and got 2 blocks from home ad my foot froze up into a wooden block. Limped the rest of the way back. Every step was brutal. Then 2 hours later it was fine.
The day before I got the wooden feet from sitting too long and NOT walking. Got out of the chair and shuffled like Frankenstein. Crazy stuff.
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I've heard that there is very little progress after the two year mark. Dr.s don't even ask how it's going as there is nothing for them to try and help.My feet always feel worse if I've been up on them for a couple of hours that day. The numbness crawls up my foot and over the ankle onto the leg. It was nice for my DD's wedding last year. I stayed in very low heels the whole day without pain. I paid for it later though. I treat my feet as if I was diabetic as far as wound care and checking them every day. I know I could get infected and not feel it for days. I love to garden and it gets tricky walking back up to the house after a couple hours with the plants. No balance at all on uneven ground. I use a hoe to steady myself with.
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grace, you surely do sound like me although my docs are linking it all to my back problems including pinched nerve
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I've had two disk surgeries with some residual numbness in my right leg, both hips replaced in the last year and a half and then broke my left knee cap after falling on it this last winter. Probably some of my mobility issues are from the surgeries but they wouldn't affect my hands. Some of the issues come from the AI I'm on as the joint pain makes it painful to move. I move around as I can but I sure can't do what I did five years ago. Really need to do some more PT. My MO kept telling me during chemo all the neuropathy would go away - right
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GraceB1, Yes I really think that we should be given a more accurate portrayal of how MANY are left with neuropathy trouble. My doctor now does not even bring it up, but at the end of each visit I make sure to pipe up and say, "and I still have neuropathy in my feet."
Although my doctor did NOT give me any idea of how much chemo could set off neuropathy, I did find something online that broke it down to how much cumulative chemo it took to give something like 85% of the people neuropathy. I actually quit my chemo before I crossed that cumulative threshold, but I was having symptoms by my fifth round. The platinum drug was left out of my next round. I felt a little improvement so (stupidly) did have one more round with the platinum drug. But I felt maxed out at that point and said no more platinum-based in my mix. Yes, I am kicking myself for doing that sixth dosage. I know I would have rebounded better without that, but no turning back time.
The point is that there have been studies that know precisely how much chemo will produce neuropathy in the majority of patients; however, doctors never present it like that. They know which drugs are more likely to cause CIPN and not just something temporary. They cover it by saying "all patients are different" but the statistics do show that a majority will be affected at certain cumulative levels. I would have liked to have heard that straight up from my doctor. So, the doctor will monitor you and ask how you are doing, and our feedback is crucial. On certain drugs, when you experience "a little tingling" the damage has already been done, but most of us naively will tolerate a little tingling in our fight against cancer. As far as neuropathy goes, that is probably when the chemo should stop. On some of the drugs. On the ones known to be the worst causes of CIPN. But, unfortunately, that cumulative level falls under what is needed to eradicate the cancer in our bodies. It is one of the many instances of collateral damage of cancer treatment. When my doctor told me his main worry is the cancer, I knew that was justified. At the same time I knew that his practice and income revolved around giving me as much chemo as possible. At the same time I had other worries about what I might have to deal with after I finished treatment. Chemo may be out of the dark ages, but as long as it has so much collateral damage, I still think of it as very barbaric. I could read about the strides being made seven days a week but until the drugs are not damaging our hearts, other organs, and nervous systems, I still have to rant about it. Of course I am thankful to be alive. Duh! Who wouldn't be? But the treatments were all terrible. Every single one of them. SO MUCH room for improvement!
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I never had chemo. Did do 5 years of aromasin so I blame it on,that
I wake up with tingling feet and sitting on sofa now after doing my gym thing and feet are numb
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Hi All,
I am a visitor from a CMF ( a chemo protocol) message board. I was fortunate to have an MO who paid attention to my concern about CINP, and found another chemo cocktail for me.
I don't know if you all know about the magazine , now online too, " Cure Today". It is a fountain of current information, patient experiences, ideas about trials and new treatmenta etc. There was an article in a recent edition about research being done on CIPN, as well as the frequency of it, and how debiltating it is. I was hoping it would have information about cutting edge treatments for it, but not really. Maybe if you have an physician in denial about it, showing him/her this article and research might help them realize what you are going through.
Here is the link. The article is in the issue on Survivorship.
http://www.curetoday.com/articles/women-experience-long-term-neuropathy-after-chemotherapy-leading-to-falls
Best Wishes to you all, stay safe.
Windward0 -
PS
I forgot to add that I went through 2 years of peripheral neuroapthy connected to an autoimmune disease I have and I know how awful the numbness, the tingling, the inability to do normal everyday things using your hands, having your leg suddenly crumble and fall etc., can be, and it was the worst time of my life, and my heart goes out to all of you who are suffering from it. I was lucky as in time ,and after steroids for the autoimmune disease, the neuropathy gradually subsided, and drained away.
I wish that could be the outcome for all of you.0 -
It's the terms "under-reported" and "under-recognized" in that article that are so disturbing.
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would love to have mine go away, steroids are funky. I lost my sense of smell after sinus surgery but recently had a steroid shot for back pain, bingo and smell is back,
Wierd
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hi everyone. I am kind of different... I had brain damage from a stroke that caused neuropathy on the left side of my body and the right side of my face. However, since my chemo it has gotten much more painful again. I have lost all feeling in the tips of the fingers on both my hands. Now the bottoms of both my feet are very painful and prickly. I have topped off on the gabapentin and refuse to.take lyrics as I felt so drunk with it. Not in a good way lol. So I am just a ray of sunshine ! Anyway, for a long time the gabapentin worked. It will take at least two weeks before the gabapentin.starts to take affect. So if someone tried gabapentin and it didn't work, maybe give it another try
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bb, glad we are active as well.
Not sure what I did but my back is happier
New back guy gave me a brace to wear, just for an hour or so and dang but it helps me feel better so, yeah my stress level is down
Picking up my foot orthotics on tues, so hoping they help my poor feet even just a bit
Enjoy the holiday
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jumbled - are you on the gabapentin for pain? It was my understand that it doesn't help with just numbness.
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I guess I do have some pain, only it is not really painful. That's not doubletalk. What I mean is, sometimes (usually at night when I am just sitting) I will notice that my feet feel like I spent the day walking on hot sand. But to be even more accurate than to just say they feel burned, they actually feel "Indian burned." The bottoms feel like they have a friction burn. Since I know this is just a phantom sensation, I try to ignore it. It's always gone by the next day.
That said, I have gotten a tiny bit of feeling in the tips of some toes. That has happened within the last six mos. (so after the two year point.) Overall, my feet are down to about 10-15% numbness now.
Hope others are continuing to improve.
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Elimar - your descriptions are great. I can always identify with your sensations because you describe the feelings so cleverly.
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My neuropathy is in my feet (at least the neuropathy I'm aware of!). I've never had pain, just burning. Not tingling, just burning. Bottoms of feet just like Elimar.
If I were to write a mathematical function of the amount of burning felt, the coefficient for CummulativeTimeOnFeet would be slightly higher than the coefficient for HardnessOfSurface with a smaller coefficient for AmbientOutdoorTemperature, but the function would have a negative coefficient for ConsecutiveHoursOffFeet. Does that make sense?
Walking across the length of a Costco parking lot on a hot day can be worse than a 5 mile hike in the shade on a soft dirt trail. Standing on hard concrete painting for 3 hours is worse than an 8 mile hike on soft dirt trail.
Ultimately, it comes down to cumulative pressure on my soles over time and the ambient temperature.
I dream of a shoe insert that is both cushioned and very very cold. I spoke with a guy that made orthotics for a diabetics and he had never had that request which makes me wonder, is this burning sensation not the norm?
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