Vent about Permanent Neuropathy
Comments
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thanks
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I'll watch since my foot neuropathy has worsened in the last month. I restarted Gabapentin but it didn't work the other two times I used it and it makes me a little unstable. Don't need any falls.
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I did reach out to the Mods and they are going to pass my suggestion about an updated report/interview on to the editorial boards. I asked them to be sure to address your question Lisa, since I know nothing about " paraneoplastic syndromes". Maybe there are also people in active treatment who are learning new things? Hope others post.
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Kamboka-- if you are very uncomfortable, gabapentin may be your most workable option. I have many reasons to be unstable on my feet, and I use hiking poles nearly all the time I am out and about.
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Kamboka - are you taking the gabapentein for the pain? As mentioned, there's always Cymbalta & Lyrica to try.
As the podcast points out, there are only meds available to help pain - NOT numbness & lack of balance. Although that information was 2018, I did 'talk' with my neurologist by "My Chart" last month and she reiterated that there was really nothing new. I thought the emphasis on PT was probably useful. I did go for a balance assessment a couple of years ago and they taught me a few good tips. I probably should go for a refresher.
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McBaker: My mom said to use a walker. My mind says I'm 20 years old but my body says I'm many decades beyond that. Cancer added a few more years to the wear and tear.
MinusTwo: I tried Cymbalta and Lyrica years ago for shingles and it didn't work. I would be willing to try them again but none of my docs recccomend them. They always reach for Gabapentin first. I'd also have to probably stop my Celexa before Cymbalta. The Celexa is keeping my hot flashes in check.
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A walker is impractical for walking six blocks. People who use walkers probably walk two blocks in a whole day. Besides, they are for old decrepit people. IMHO-- or not so humble. Poles just look cooler. I talked to my PT yesterday, and she told me that I really need the two poles; a cane is not sufficient. I am going to quit using the straps on the poles as a substitute for gripping them.
Insurance won't pay for the others unless the doctor can prove that gabby is not working for that patient.
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also the large hiking rods you get at National Parks.
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Something I'll have to look into if I can't correct this instability. I start PT next week.
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Bumping for NsBrown
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7 1/2 year survivor here. I took a break from BCO awhile back. Coming here regularly made me focus on my cancer and I felt after 5 years I needed to try to put this crap behind me as best as possible.
The reason I am popping back in was to see if anyone discovered a treatment that has worked for them but doesn't seem so. ☹️ I have really been struggling with this neuropathy and while it use to just be pins and needles and weakness, it has now progressed to being quite painful. I will share one thing and by far not a miracle cure but I have a topical which contains 400 mg THC. While I have leg pain, my feet are the worst and because of the expense I use it sparingly. I do find when applied to my feet I get perhaps a 30% reduction in pain. Not much for the price but at least it is something.
Minus, so good to see you here. I think of you so very often. ❤️
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Lisa - LOVE your walking stick.
Not Broken - good to see you too. Sorry you're still having such pain. Thanks for the recommendation.
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I got that walking stick at Glacier National Park...I love it, DH just used it as he just had his knee replaced and he didn't want to use a cane..
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I, too, have progressively bad foot neuropathy. I've tried so much. The foot soaks in Epsom salts right before going to bed is nice but I don't always have time for that. I also try Australian Dream and it soothes for the short term. I'm going to try the THC and see if that can help. No matter what I use before bed, when I wake in the middle of the night, they are aching again. MO put me on Gabapentin but that didn't work. They want to try Lyrica next.
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I'm looking forward to a report from Cowgirl on another thread. She's just started accupuncture treatments. It would be nice to have a positive report on that.
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Lyrica worked for me
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What a strange condition neuropathy is. Yesterday the pain in my feet was the worst ever and today hardly any pain, just pins and needles. I wonder what tomorrow will bring. 😣
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I'm on a taxane for 1 year now & neuropathy has fluctuated. Got as bad as 2. Had a couple weeks break during rads in December and it improved greatly. My strategy: b6 100mg daily; keeping hands and feet very warm always (thick thick socks, gloves and mittens, fingerless gloves indooors....everything to keep tissue warm and improve blood circulation; massage; regular sweaty aerobic exercise. I dropped back to 0/1. I believe key is keeping blood flow to area so heat and exercise. Nerves regenerate but very slowly and they need nutrients
If I didn't have liver mets I'd take l glutamine as well but it doesn't play nice with my liver...but if your MO clears it I believe it's also helpful. There was a study recently about exercise and neuropathy I'll try and find & post
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Hi NotBrokenJustBent - my neuropathy pain seems to wax and wane. It seems the more active I am, the worse the pain. Especially if I’ve been in my feet a lot. I usually ice several times in the afternoon, which gives me temporary relief. I’ve contacted my MO for guidance.
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So this study was done *during* chemotherapy so hard to assess from this whether response post chemo would be the same. Nevertheless, important information for us to disseminate, to others coming up behind us. Exercise during chemo as much as you can!
https://pubmed.ncbi.nlm.nih.gov/29243164/
Effects of exercise during chemotherapy on chemotherapy-induced peripheral neuropathy: a multicenter, randomized controlled trial
"Exercise appears to reduce CIPN symptoms in patients receiving taxane-, platinum-, or vinca alkaloid-based chemotherapy. Clinicians should consider prescribing exercise for these patients."
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Hi moth - thank you for sharing. I hope exercise after chemo helps with neuropathy pain too.
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I haven't posted here in awhile. For the most part I have just been dealing with cold feet, sharp pains and hand tingles.
I was recently diagnosed with metastatic disease and started treatment of Kisqali/Faslodex.
Last week I started having pins and needles and stinging pain down my back, into my butt and thighs. I also feel it on my shoulders down my arms. It's worse with movement, but comes and goes.
My MO ordered a blood work and urine sample. They are looking at b12 and myelin....has anyone had myelin tested?
I will be honest, I was trying to not worry but I have halfway convinced myself it is MS thx to google.
I'd love to hear anyone else who have had thos blood work done.
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tangandchris, hope you track down the cause and it's something simple and fixable! Let us know what you find out.
I wanted to share this article from the Journal of Survival Oncology about neuropathy. It's highlighting the fact that studies are scare and poorly conducted so hard to compare......*BUT* ..... if there's one thing that seems to be helpful it is exercise.
https://link.springer.com/article/10.1007/s11764-0...
"results of this review suggest potential benefits of exercise on intended outcomes."
evidence suggests exercise - type, duration, qualtiy are all still debatable - is your best bet at preventing and treating symptoms.
MY non research scientist suspicion is that anything which improves blood flow to the area, as well as stimuating the afferent and efferent neurons will promote healing or new growth of the nerves. But that's really just my guess at the mechanism. -
tangandchris, your symptoms do not sound like neuropathy. Hope you get your answer soon. Testing for myelin, is that even possible? Interesting.
Moth, yes, that is my understanding. Exercise increases the circulation and thus oxygen to the tissues and muscles. Conversely, smoking decreases oxygen levels and yet just one more reason those with neuropathy are advised to quit. I don't know about you but the more active I am the worse I feel.
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Saw this outside my PCP's office today. Sadness, Anger and Hope weighed heavily.
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Love it, although I wouldn't drive around with it.
I got my ankle brace modified so I can get back to some serious walking. I have two shots in me as of last week. Really eager to get back to the gym, but I will wait until the end of the month-- I think. Been bugged with a persistent sadness lately, probably just a need for exercise. But my garden is begging for some serious work, which is more strenuous than walking. I really can't feel the numbness in my feet when I am wearing shoes. 8
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I am wondering if I should start at the beginning of the thread in case I miss something or if things have changed enough over the years that it would be a waste? I guess I will start and see how it goes.
I have been aware of this thread but kept hoping my neuropathy would go away (BMX 2013). I have had osteoarthritis for years and assumed much of what was going on was related to that until last year when I long awaited appointment with knee replacement surgeon came up and he declared that surgery would not help my neuropathy and that looking at the medications I had for chemo he said the pain was not from arthritis but PN. He told me to adapt and to stay close to my walker and be careful picking things up. That information has helped me to accept it better.
I knew I had neuropathy right away because of pain but I didn't attribute endlessly dropping things and losing my balance to neuropathy until a bad fall in 2018 when I decided I could make it across the street without my walker. Sprawled across the road stepping off the curb.
Since then it has been much worse. I am really weak in the legs and can only stand for a minute or so and have to sit on my walker if out. I can only walk for 5 minutes max before having severe pain and if I overdo it I have to rest for a day.
Compared to many I do feel pretty lucky. I am 74 and can manage without going out much with covid. I do curbside groceries and doctor appts via zoom or phone. Prescriptions are either delivered or curbside so life is pretty simple I do miss haircuts. :-)
Just jumping in here to see how people manage and to confirm that stuff happening to me really is related to PN. Great thread.
ETA: I only had one dose of chemo so neurologist in the beginning said I couldn't have neuropathy. Since then (EMG studies) it has been confirmed that it is NP
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wren, Sorry about your neuropathy. What type of dr does an EMG? Thanks
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