Vent about Permanent Neuropathy

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.

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.

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.

also the large hiking rods you get at National Parks.

Here is what I have; https://www.amazon.com/Coleman-2000016536-Trekking-Poles/dp/B002YXNEDQ/ref=sr_1_3?dchild=1&hvadid=78134182990954&hvbmt=be&hvdev=c&hvqmt=e&keywords=coleman+hiking+stick&qid=1601604967&sr=8-3&tag=mh0b-20

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. ❤️

Lisa - LOVE your walking stick.

Not Broken - good to see you too. Sorry you're still having such pain. Thanks for the recommendation.

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.

Lyrica worked for me

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

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."

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.

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.

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

wren, Sorry about your neuropathy. What type of dr does an EMG? Thanks