Vent about Permanent Neuropathy
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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.0 -
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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wren, Sorry about your neuropathy. What type of dr does an EMG? Thanks
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Neurologist orders EMG. It tells them a lot.
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Hi All,
Just wanted to ask about others experiences with side effects from Gabapentin 200mg daily. Though this is a small dose, I would get twitching eyes and weird feelings in my head. I really think it helped with the pins and needles and even the back pain from the hormone treatment. I sleep better and It helps with hot flashes. But, I don’t like the side effects, it makes me worry. I have weaned myself off over the last two months and neuropathy is worse than ever. The eyes are better and no weird head sensations. Any advice or suggestions, please!
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Hi Humblepeace- have you discussed other treatments for your neuropathy with your MO? There are other prescription drugs that can help. I’m taking 1200mg of gabapentin daily, but don’t get any side effects. It definitely helps me sleep better and managethe hot flashes. I use cream (contains menthol) on my feet and ice them a couple of times per day. Staying active help me as well. I hope you find a solution that works.
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I weaned myself off of Gabapentin, went from 2700 mg to 900 mg, dropped 300 mg per week. Stayed at 900 because I started having nerve pain again. If you wean too fast, pain will become a problem because of withdrawal. Similarly, what some people call side effects are temporary-- it takes a while for your body to get used to it. That is the reason it is also increased gradually. These are my experiences, yours may be different.
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Nsbrown54 and MCBaker- Thank you for your responses. I have had the dickens with side effects from meds. I do believe my pain and basic neuropathy did feel better while on a low dose of Gabapentine. I walk daily, not as much or. asFar as I would like to due to dizziness from hormone therapy. Some days are not too intense. I’ve been on AI for almost three years. These SE are hated!! I’m currently trying Letrozole, two months now. I also developed tinnitus from one of these....I believe Arimidex was the culprit!!
Thanks for your support
Humblepeace
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I saw MinusTwo mention a page pack that I was trying acupuncture. I had been doing acupuncture twice a week for a total of 8 treatments and have now dropped down to once a week and eventually will get dropped down to once a month at some point. I did it mainly to help with back pain and sciatica that I have been dealing with for a year and I mentioned to the doctor that I also had neuropathy in my feet so he has been treating that as well the entire time. I also have some neuropathy in one thumb and a portion of a finger but because that is my arm with lymphedema, I did not have that treated. My back has improved considerably over the last few months...not healed but much much better and I even think I might get to a point where I can ride my horse again some day! I still have the neuropathy in my feet but I do not have the sharp pains in them that I would occasionally get and the weird feeling may be a little better. I do take gabapentin as well and have been on that for at least 6 months.
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I take gabapentin and not sure I can get by without it. My feet are so painful, my sciatic and leg pain keep me from doing a lot. Letrozole has given me tinnitus and made my sciatic nerve worse. I don’t really have any side effects from the gabapentin, just relief
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I went from gabapentin to pregabalin because I was taking so much of the gabapentin it made me sleepy, Not so much with the pegabalin (Lyrica). I took it for 16 years and then tapered off last year and added accupunture..Now I am not taking any. I still have some pain, but not like before..it helps me to take a short siesta in the pm.
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Hello all, I had some mild neuropathy and hand-foot syndrome in my feet while on xeloda until August of last year. I started Taxol in late September and since January my neuropathy has gotten severe in both feet and both hands. I intermittently feel like tight bands are wrapped around my ribs and there is intermittent tingling in my face. I may be switching to a new therapy in July but I don't believe that my neuropathy will improve even if I stop Taxol.
I have been Stage 4 for 6 years now, which means my treatment will never end until either I croak or I choose to stop it, but this past year my quality of life has gone to hell in a handbasket. I lurch around like a baby learning to walk or a drunk, even with my cane or a walker. I have started to exercise at home to try to strengthen my legs and help with my balance. We shall see what we shall see.
The main things keeping me going are my very dark sense of humor, my loving family including my dogs and cats and the fact that I'm full of piss and vinegar.
I wish everyone here well. There's no question that "we wuz robbed" and I appreciate having a place to vent.
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Kattysmith - I hope you find some relief. Has your oncologist suggested different medications to see if that improves your neuropathy? I find that walking / keeping active helps with my neuropathy pain. I’m taking gabapentin to help manage my pain and ice a couple of times per day.
I recently developed some facial numbness and was diagnosed with facial palsy. Yet another medication added to my long list of medications added tohelp manage side effects from the chemo drugs.
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