Vent about Permanent Neuropathy
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I may need to do an ice cream run, did a bunch of walking today, massaged the feet, bit better but ice cream would be better
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girls, i think we found the cure! laughter & ice cream all around!!
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works for me! massaging my own feet does seem to help so now, it will be part of my after workout routine! wonder if the snack bar has ice cream?
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hi, I have now had two acupuncture sessions for my neuropathy. My main symptom is total numbness in my toes and the balls of my feet. After the first session I had a little more feeling in my toes, small but noticeable. After the second treatment the reduction of numbness. In the toes begain to move into that area between th toes and the pads of the feet. So I am hopeful.
Another thing though is the immense relaxation response I experienced, particularly during the second session. The acupuncturist is not only placing needles in my feet but on the spots connected with optimal nervous system functioning. Whatever he did, I felt like I was sort of floating during the session. I really didn't want it to end!
I have another session this Thursday so I will see if this produces any further results.
Hugs,
Peggy
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Acupuncture worked wonders for me.
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I still have not looked into accupuncturists for CIPN. The last one I went to was such a quack. He did a Dx thing that he called "pulses," to identify various ailments. Funny, he never detected cancer but instead told me I could be pre-ALS. As in ALS--the degenerative disease that you die from. What an irresponsible thing to say. Here it is a couple years later and I sure do not have it. Guy has a whole decent-sized new-age practice too. What a money-grubbing phony. I am sure there are honest ones out there, but I am skittish about the process of trying to find one.
My update this month is that I might have made a tiny improvement, with lefty at 20% numb and righty at 30% numb. BUT THAT IS ONLY ON A GOOD DAY. Some days I feel like it is still at 25%/35% like it was two months ago. Lefty has more area of numbness but less intensity; righty is really just numb in the ball and toes, but the big toe is the numbest of all areas affected. I may have reached a plateau, or else I am stuck here for the rest of my life.
Will be reporting all this to MO at the end of the month. They don't care. I feel like quizzing them to see if there is even a note in my chart from last time. (Can you tell I am very disgruntled about my CIPN at this point?)
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I had three sessions of acupuncture & did not get relief - tho It could very well depend on who you go to - I found I couldn't really relax during the sessions - in fact the opposite - i felt tense. I did feel better in general afterward - but not my feet. She also was doing a pretty intense massage to my toes which actually kind of hurt - maybe because i have arthritis as well? the last session i asked her to skip the massage - she said she would take a different approach & put more needles in my back...
i am sooo tired of the foot pain - i feel it is traveling up my left leg as well...I have started the Gabapentin - how long be4 I can tell if it's working??
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elimar, what? ALS, where on earth would that have come into his differential, I don't get that at all.
We're on a warm stretch here but at least my feet aren't as cold at night so they don't hurt as much I'll take it
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kmmd, I think he was just being a spiteful idiot. His treatment failed to help the pain (not this CIPN) that I was going there for, and I had told him I wasn't coming in again. They don't like when the wizard curtain gets pulled back. He was just a spiteful man with a few needles.
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there are quite a few quacks in acupuncture out there. I've got a good one I think ...So hard to find one though. I am slowly regaining sensation in my feet but it is really slow going but better than nothing. I've added alpha lipoic acid to my B6 B12 regimen. A.couple more supplements added that I've read about on this thread but it's too early in AM to remember. I've been having a really hard week sleeping and I don't know why. Second time in last 3 days I've woken at 4 am and couldn't get back to sleep. Yuck.
After I get more feeling in the balls of my feet I am going to start physical therapy for balance issues.
Hugs to all,
Peggy
PS. Acupuncturist suggested I alternate a warm and icy foot bath in evening several times for insomnia (and could help the feet). Haven't tried this yet. Maybe tonight. Need to find some container to.soak them in.
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Hello ladies....I read drinking sour cherry juice can help with insomnia, I have been eating cherries everyday and seem to be sleeping better. Will be sad when they go out of season.
I am apprehensive about going to an Acupuncturist that is just awful what he said to you Elimar. Shame on him.
I believe my feet are getting better s-l-o-w-l-y. Now I am having muscle spasms in my feet that are not painful like a Charlie horse but weird none the less. Unsure if they are related to nerves or taking Tamoxifen. I know if I asked my MO he won't know anything about it or say it is unrelated.
Healing hugs and thoughts to everyone.
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lovewins, so many women have complained about Charlie Horse's with Tamoxifen it is hard for me to believe it is a coincidence.
elimar that ticks me off no end. That is just spiteful and doctor's aren't supposed to do that. He's in the wrong profession
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Peggy: You might start with water aerobics. It's less stressful on the body & I find it much easier to re-learn balance in the water.
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Look for Chinese trained acupuncturists. The ones trained here get a crash course and only get the basics over a few weeks in class.
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We organized a banquet last night and I was testing the water temp in the warming trays. I did the finger dip method ( I know, not the smartest way). I held my finger in the water and declared that it was barely luke warm. My friend did the same and pulled her finger our while yelling in pain. So did the next friend. They wondered how I didn't notice. I suddenly remembered, oh yeah, I have neuropathy.
Didn't realize how bad it has become.
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wow pip.....that is scarey. hoping it improves soon
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This is an interesting thread.....I think that I have neuropathy after reading what everyone has to say. I knew that anastrozole was supposed to cause joint pain, so I assumed what I was experiencing was just that. During chemo, I developed small blisters on my toes. Since chemo, I lost several toenails....all have grown back except my big toes. My podiatrist told me that the nails on those will not grow back. When I begin to walk after sitting, it is very painful....my feet do not want to bend. It is the worst upon waking in the morning. I walk 3 to 6 miles five days a week, but it doesn't seem to alleviate the problem. I did not have this problem before chemo. Has anyone had luck with vitamin B infusions?
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I had my first neuropathy injury 10 days ago. I cannot feel the toes on my left foot. I was helping my sister move. Because I can't feel anything, I was SHOCKED when I looked down at my big toe and it was twice its size and black and blue all over. I never felt the pain, still don't know what I did, etc. The good news is it has healed and looks so much better. Everyone wanted me to go get an x-ray. No way, said I. After cancer treatment, a little toe injury isn't anything to get excited about. It was still weird, though! The moral of the story is, protect those feet if you are doing hard labor!
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Denise, sorry about the bum toe~~
I hit my toes all the time and only realize I bumped them after the fact when I see some red bruising on the dang thing.
wish I knew a solution, although, my trainer suggested massaging the feet and it does help a bit
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pip, it is so not funny but it is, I have so been there
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Thimbleberry - Welcome but sorry you have to join us. I've never heard of toenails not ever growing back due to chemo. I do know if there is an injury or infection to the nail bed you can lose the nail permanently. Adriamycin can cause blistering. Look up "Hand & Foot Syndrome" to see side effects and ways to treat. I took B-6 and B-12 all through treatment and added Biotin for my hair & nails once chemo & rads were done. Still taking all three. MY PCP recommended putting Tea Tree Oil on my nails at least once a day. My nails are still brittle & lift some back towards the cuticle but I'm not surprised since I'm still getting Herceptin infusions. I don't think the B vitamins are helping the neuropathy.
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MinusTwo, thanks for your insight and information. I will check out the hand and foot syndrome section for more information. I see my oncologist today, and I will ask him if he knows of any thing to help me. I hate to admit it, but it seems as though the ladies on this discussion board know more about side effects than he does.
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I've never heard of them NEVER growing back either. Mine never came back in looking the same and the nerves to the feet never came back but at least the nails came back in
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Glad to hear that your nails did grow back kmmd. Mine are narrowing and maybe a toe nail grew on top of another toe nail. They are very painful though.0 -
I do notice a difference when I eat alot of sugar and when I am on my feet alot. I am noticing now thtat my arm and hands are feeling different. I also think my hot flashes from tamoxifen are worse because I think I have some slight nueropathy on my legs and even my face. It is more noticeable at times I agree. Lately I feel like I am mocused in on it more. I know mine is not extremely bad but it is annoying none the less.0 -
when I am on my feet, they just ache, I woke up this morning with achie feet and now sitting here with pain in my hands, no idea why on the hands
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I didn't even have chemo but times I can not remember which way to turn when I go to the end of my street, and where the heck I think I am going!
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The burning where my lymph nodes were removed and my breast hurt a lot more after radiation. I think I did something to my arm lifting too heavy of bags when I went shopping...now I think it is slight Lymphedema or maybe neuropathy, I don't even know what to blame for what anymore...LOL. At least my joints in my knees feel better lately for a minute it was all I could do to get up out of my chair! I joined a gym and see my personal trainer on Sat....hopefully it will help with all this weight gain.0 -
I hope it is ok if I call you BB.To be honest while I have improved and eaten more fruit and veggies...way more, I am an emotional eater and I quit smoking so I am eating too much and things I shouldn't. My goal is to eliminate processed food but I still have a ways to go. Nuts would be good for weight gain I would like and maybe smoothies? Are you eating meat? Tamoxifen is also causing me to feel bloated and gain weight. Are you taking any hormone blockers?
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Bosum - you are so lucky not to be gaining weight w/your diet. I lost 60 lbs during treatment but finally started eating my preferred bread & potatoes & pasta again two months ago and the pounds are piling on.
Love - Congrats on quitting smoking. It's such a hard thing. It's been 7 years for me now.
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