Vent about Permanent Neuropathy
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I ran out of my CBN (CBD for sleep) last night, and pain woke me up. Usually, it is mild as my pain meds wear off, but this was bad. I have been more gimpy since I broke my knee around thanksgiving time.
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Hello, all,
We wanted to let you know we have organized a new meet-up for people age 45 and under with a metastatic breast cancer diagnosis and wanted to let you know in case you would be interested in participating if this meet-up description applies to you. The meet-up will be run by Julie Kramer, who had a metastatic diagnosis of sarcoma in her 20s.
Under 45 w/ Metastatic Breast Cancer
When: Thursdays at 1pm, ET (first meetup is May 26, 2022 1:00 PM Eastern Time (US and Canada)
Register in advance for this meeting: https://breastcancer-org.zoom.us/meeting/register/...
We hope to see you next Thursday, and please share with others who may be interested in being part.
-- The Mods
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My feet are fine in the morning, but by afternoon the burning returns. Taking off my compression socks and using CBD cream helps. I may try some low heat and low tens, which is what my acupuncturist used. Was doing fine until I had to stop walking while I dealt with my hip issue. I've been increasing my steps lately, but my feet are burning. Guess I need to see my neurologist. Thank you all for the suggestions.
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Mods - I think you got the wrong thread. I don't think most of us here have mets. And although I don't know about card-player, I believe a lot of us are over 45.
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I think the mods are posting this in a lot of threads just to get the word out. I’m over 45 but I’m a stage 4 patient. Besides the ones of us whopost, there are probably some lurkers that it might apply to.
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Yes, I tried it, and for some reason (which I can't now remember) I couldn't tolerate it. Back to my regular dose (1800 mg./day), 600 AM and 1200 PM.
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Horrific foot pain the last two days. I keep trying to figure out what may have triggered this. Only thing I can think of is some major stress, but then again maybe it just is.
How you all doing?
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Sorry you're dealing with pain notbrokenjustbent. My feet seemed to have gotten back to status quo now that I'm back to walking 2 miles every day, along with my regular regimen of meds. Sure wish there was a long term solution.
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Oh NotBroken - so sorry to hear this. I have to agree with Cardplayer that I had less pain when I was walking regularly. However walking meant my big toe nails wouldn't re-attach and then continued to get fungus. GRRRR. So this summer as a test I'm only wearing flip flops and NOT walking. It's 100 degrees plus every day so at least my feet aren't their usual freezing blocks of ice.
Other than that - the residual "light" neuropathy in my fingers still causes problems trying to 'swipe'. Can't feel if I'm doing too hard or too soft or..... Thank heavens I still have a desktop computer with a keyboard - and of course a flip phone, since swiping a smart phone doesn't work.
Hope your boys are OK. I've only seen my son once since the summer of 2019 due to traveling issues. Hopefully he'll be here for a day or two the end of the month.
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I have a laptop. I frequently unintentionally touch the pad, usually shrinking the display. Cannot feel it when I do it. I keep thinking about turning it off, but I am afraid of mouse failure and not having an alternative means of accessing it.
Same thing with my phone. There are times when typing on that my touch is so light I cannot feel it.
I fell off of an electric bike at Thanksgiving last year, causing a dislocated knee and tibial plateau fracture. I sold the bike, and walk most everywhere with hiking poles now. My ortho recommends using an exercise bike, but I still need transportation (I can't afford a car, and won't let my daughter buy me one). I bought a Schwinn adult trike, and am in the process of getting a motor put on it. Nice basket for groceries or dog, and I will be able to get my needed exercise without straining myself on the hills. Pounding on those feet does set off pain. Of course the bike prevents aggravating my knee and lower leg problem. The motion of the legs when bicycling is more structured, therefore better for a wobbly knee joint.
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Mary, great idea. For my exercise I thought about getting a Cubii or something along those lines. I have terrible weakness and atrophy of muscles due to neuropathy and lack of physical activity due to back issues. My hope is that these muscles if strengthened wont be as wobbly and weak. Hoping the nerves can still communicate with the muscles.
Yes, I remember once when driving I couldn't feel the break petal. Scared me and thought I would have to give up driving but hasn't happened since, but I have noticed I can't tell if I have socks on unless I check.
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My ortho told me that those little pedalers are no good unless you don't walk. I bought one, and just had it picked up for the parish rummage sale.
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I was checking to see if there were any interesting clinical trials for chemo induced neuropathy and thought that I'd share the search findings. You can modify based on your particular interests, state, etc. I kept this search pretty broad.
I participated in a study at Johns Hopkins several years ago for a GI issue that I have. I had to go up to Baltimore from Northern Virginia every 6 months, see a GI motility specialist, gotlots of blood work, do paper work, sometimes had other testing done. Usually was 4-5 hours visit.
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Hey Minus, somehow I missed your post. I chipped a bone in my foot a full year ago. Long story but I still have ligament damage and told I need surgery but I cannot afford the down time, 4 weeks in wheel chair and 4 weeks thereafter in cast so I can't even drive. Not doable. We are trying PT and while the Dr was not optimistic, we are hoping for some improvement so it will be more tolerable and won't hinder my life too much. Anyway, PT 3 days a week and he said I could walk a bit as long as I keep my brace on so I have been walking a bit. My muscles are like mush so hoping to build them up some so neuropathy weakness in legs improves. My first goal is one mile, as ankle permits.
I don't see a whole lot of my boys either. When they were little my then hubby often taught night courses. By evening I was exhausted so I got into the habit of letting them climb into bed with me and fall asleep while I watched TV. Oh how I miss those days.
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Haven't posted on here for along time, but it doesn't take all the newer posts to tell me that it's same ol', same ol' with the barbarically harsh chemo drugs still doing all of our nerves in. Am I glad to be alive to still complain about my feet? O.K., yeah, ya got me.
It was a platinum-based drug that caused my neuropathy, not the taxanes that most of you had to deal with, but still...I was left with two blocks of wood where I once had feet. I fared better than many, always able to move, and after 3-4 years some of my nerves grew back, BUT THEY GREW BACK STUPIDLY!
The nerves seemed to be arranged more sparsely, like I had enough nerves to feel that I had lost some feeling. I think a lot of you can understand that twisted statement.
I am NOW 9 YEARS OUT. After 4 years, I ceased to improve; and after about 7 years, I noticed some decline. What I mean is that I used to just have numb areas to my feet, but they didn't really hurt. In the last couple years, I have had random knife-stabbing pains that come out of nowhere. I look down and notice that no actual knives are stabbing me, so that is what I mean by the nerves being very stupid now. Luckily, those sharp pains do not last long.
I can still remember the feeling of having normal feet and I miss them.
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My tip, as always, to those with new neuropathy: DO walk or move your feet as much as you can to get good blood flow to the feet and promote healing and new growth of the nerves as much as is possible. Healing wishes to all.
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I alss miss my normal feet. But not as often as I did.
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Interesting Eli. I had carboplatin & taxotere together...WOOOP. I had some improvement for 2 or 3 years, but now I'm 8 years down the road. Occasional pain but not constant or regular (thank heavens) - mostly dead blocks ice. What I hate the most is my lack of balance. If I don't watch my feet whenever I'm walking - I'm definitely a fall risk. Luckily I've only had one major fall & a broken shoulder. Ugh.
McBaker - glad to hear you've adapted. Does the neuropathy inhibit your biking? My feet don't readily find or stay on the pedals so I gave up.
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The numbest one is often sitting too close. I take a look and move it out. I think that is the reason why I damaged the chainguard right off at the beginning. Amazon.com : Qeedy Bike Pedal Straps Pedal 2 Pieces Universal Bicycle Feet Strap Pedal Straps Toe Clips Straps Tape for Fixed Gear Bike : Sports & Outdoors should work if I continue to have problems. If it doesn't, I have done business with this company before. Toe Box Pedals (Set of 2 - Sunlite) - Monster Scooter Parts
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I find walking every day helps my neuropathy. I did increase my gabapentin dose during the day, which helps too. Some days I get little zappy pains. CBD cream helps. It's probably the massaging of my feet more than the cream. Some days are good, some days are meh. I do find my balance is worse though MinusTwo. Hope you all have a pain free day.
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After Chemotherapy Fatigue May Contribute More to Balance Problems Than Neuropathy
Saw this on Facebook from BCO today.
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Wait....BCO is posting on Facebook? Get out of here.....
But yup - it's true. I just collapsed at an elevator one day during my chemo. Didn't fall - legs just folded up and down I went. Thought for awhile it might be a good idea to take a nap on the floor in front of the elevator - but I was blocking the door.
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That numbness when fatigue has you wanting to nap RIGHT NOW, but it is not convenient or practical. How I can relate! And right now, I am up later than I have been for months!! Good night.0 -
I have been using Voltaren for the last month. It has really helped the pain and burning, I can sleep at night. My feet are still numb and I can deal with that, Just getting to sleep has made such a difference, I still use gabapentin everyday.
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I used Lyrica for 10+ years of the 20 years I have had neuropathy. It was the only thing that worked for me. I also use Votaren and have been for 20 years and it helps some things very well...Acupuncture also helped a lot but I had to try three different people to get one that worked.
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I did 16 sessions of acupuncture and had some relief, but not total. I probably should go back though, since I've been experiencing more pain in the afternoon and recently increased my gabapentin dosage. There are only two reliable acupuncture practitioners in the city that I live and only one was taking new patients.
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