Vent about Permanent Neuropathy
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Katty - so sorry the Taxol has done a number on your neuropathy. As NS Brown points out, had you tried different meds for the neuropathy pain? Fortunately I have little pain. But there are no medications to "repair" the damage to the nerves. However - almost 10 years down the road, I will be seeing my neurologist again to see if there's anything new in the pipeline. And I think next year I'll try accupuncture. WTH - it can't get worse (famous last words).
I've spent a fortune on shoes & started walking last year, eventually working up to 5-6 miles a day. I'm not sure if that delayed further problems, but my feet are still mostly big, numb, blocks of ice. I have to watch my feet at all times so I don't trip because I can't feel anything. The other thing I really hate is the loss of balance. I can't stand on one foot w/o holding on to something - even long enough to get into the shower or a car. GRRRR.
Love the dark sense of humor AND the piss & vinegar. You go girl!!! And vent anytime. I really believe it helps to "bitch" to people who understand.
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Thanks for the welcome y'all!
Fortunately I don't have too much pain and it's never constant. I do take one Gabapentin at night and ibuprofen most mornings for my crappy knee.
Minus Two, that's great that you can do so much walking and I'm looking forward to building up my leg strength and stamina enough so that I can do some too! My feet are also big blocks of ice and I have to remind myself constantly to pick up my feet.
BTW, I think acupuncture is a great idea; I've had it in the past.
It's good to be able to touch base with others who are going through this strange weird trip we are on!
Katty
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Supplements for neuropathy? I'm trying them again:
I'm not sure if my experience is relevant for people suffering from extreme neuropathy pain, ongoing, and challenges walking. I am lucky not to have those issues. My neuropathy is just tingling and numbness. It comes and goes. Sometimes feet, mostly hands, especially finger tips. About 1 year after chemo ended, it really went away. Suddenly, it's back, with especially numb fingertips. So, with my oncologist's clearance, I've restarted expensive supplements. They're the same ones that she recommended that I take during chemo, because my chemo interrupted the absorption of these enzymes: Alpha Lipoic Acid, B6 and B12 (B complex usually has the correct proportion) and L-glutamine. Each has a role to play in nerve health. I took them all during chemo and also after chemo ended, for 6 months or so. I also did icing of my feet and hands during each chemo infusion. Who knows if the icing helped or not, since the effectiveness of that --in 2018-- was still not known conclusively from clinical trials, but I did it just in case it might help.
Do I now have expensive urine, or is this actually helpful, to re-start these supplements? Well, last time I couldn't tell whether taking these supplements for 6 months made my neuropathy lessen, or whether I was just repairing naturally, with a Tincture of Time after chemo ended. It's true that nerves CAN re-grow, but very slowly, and not always, depending on the damage. I'll now try the neuro-health supplements again for 3 months and see if the symptoms lessen.
The advice nurse at my oncologist's office has a sense of humor. When I ventured to ask why the heck I suddenly got this numbness starting up again, she said the cause could be the turning of pages on the calendar. Ha ha. Just aging. Well, that's still better than the alternative.
I'm a classical pianist, and I'm back to playing trios with my violinist and cellist friends weekly, since we're all vaccinated. I don't want to lose any more finger sensation, obviously, so here I go, taking stuff that Might Help. We shall see....
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Hiking Lady - I'll be interested to see how your new drug regime works. I never stopped taking B-6 and B-12. But I did stop the Alpha Lipoic Acid and the L-Glutamine a year after completing chemo & the year of Herceptin.
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Hiking Lady, thank you for all the information about the supplements and that is wonderful that you are a classical pianist and are getting to play again!!!
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hello. new to this site, but am glad there is a neuropathy forum available.
anyway i was diagnosed with peripheral neuropathy about 7 years ago, cause unknown,, but i did have chemo 12 or 13 years earlier for my first breast cancer, may have been due to that, i think, symptoms were in my feet, mostly numbness and tingling, an occasional "electric shock" type pain. but symptoms were pretty stable, not really extending anywhere. 18 months ago i had spine surgery L5-S1 - rods and screws put in to prevent bones from collapsing from the metastatic disease and SBRT L5-S3. after that i think my neuropathy felt like it started spreading. i was having tightness in my feet and around my arch it ,felt like i had a tight sock on. then it was a tight sock up to my ankle. now i feel like i have tight socks on all the way up to my knee. not sure why it started extending so much and so quickly. i'm thinking that maybe my nerves were irritated during the surgery (certainly the nerves controlling that area are the same nerves that are in the area that was operated on.) my neurosurgeon just said "you had neuropathy before the surgery, you have neuropathy now"
anyway that's the history. now i am feeling like i have tightness upper thigh, maybe between my legs. i wake up in the morning and feel like i am lying on wrinkled sheets at the top of my thigh, bottom of butt area (nothing is there, very strange). also sometimes i feel like i have a towel in-between my legs. i know this sounds weird, but that's what's happening.
tomorrow i am going for EMG, cause my neurologist is concerned about what's going on in my upper thigh area. he mentioned Guillan barre and some other disorders??? anyway i'm anxious about what results will be - i know there is something going on. has anyone here ever had symptoms going up the whole leg. (even tight socks up to my knees i think is not usual?) i'm willing to attribute all this to peripheral neuropathy if that's what diagnosis is, i just want a diagnosis.
if anyone has something to add, i'd appreciate hearing it,
ty all, teri
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Teri, I hope that your EMG went well and will reveal what is going on!
My experience with neuropathy is different from yours, but having progressive loss of sensation and mobility is very frightening, so I feel you!
Please keep us posted,
Katty
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thanks Katty, had emg. it was actually painless. ive had emgs before and they were never painless. anyway doctor told me that the place he learned how to do emg's was called painless emg.
doctor told me that alot of my symptoms are related to the surgery, but nothing to worry about, i will speak with my neurologist to get more exact details, but it was good to hear "nothing to worry about". doesnt mean my symptoms wont get worse, but at least i know there is no serious disease going on, just nerves that were irritated by surgery.
thanks for being there. i'll stay in touch
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That's really good to hear, and thanks for checking in!
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Just popping in to see if anyone found a magic cure yet. My neuropathy has been very bad the last few months. I must admit I have been very stressed, drinking more than I should as a poor coping mechanism and slacked off on my diet. Also other than a multi and vitamin C I discontinued the other vitamins. Trying to get back on track now. Hopefully that will bring on some relief/improvement?
As a single person I struggle with good nutrition. It seems like so much work in preparation, clean up and much wasteful leftovers so I end up eating a lot of the frozen prepared foods. Tomorrow is shopping day. I will be more conscious of my diet. Also my nutribullet died months and months ago. That enabled me to get at least 5 fruits and veggies a day so that will need be another thing on my list.
There are local neuropathy clinics but sadly treatments are not covered by insurances and I understand costly but perhaps an option for some of you with better financial resources. Worth a try?
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Hi NotBrokenJustBent - I haven’t found a magic cure, but have been doing things that make my symptoms tolerable. I do see a neurologist, so I have an RX for gabapentin. I take 1200mg daily, plus 1000mcg B12, and 250mg Magnesium to help manage my neuropathy symptoms. I walk 1.5-2 miles 5-6 days a week, ice 2-3 timers per day, do REIKI therapy, am trying some essential oils on my feet, and will start acupuncture in a couple of weeks. I find keeping active helps keep the pain away.
I hope you’re able to find something that alleviates your neuropathy.
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hey, hey, hey - NotBroken. GREAT to see you!!! Sorry about the neuropathy. I'm in favor of B-12 and B-6 and magnesium, but I'm pretty good about taking vitamins. I'm finally going to see the neurologist this month. The appointment was cancelled twice last year due to Covid. Looking for some new tips & to see what's coming down the pike. I don't expect much but I'll certainly pass along anything I learn. I'm fortunate not to have much pain, but there are so many things I can't do with numb feet & no balance, and numb fumbling fingers (my son wants me to get a hearing aid but how in the hell could even put in the battery?)
Like NSBrown, I started walking when Covid started. Over a year I worked up to 5 miles most every day. Unfortunately with gyms closed I didn't keep up with balance exercises & muscle building (except my legs of course).
I think of you often!!
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Hi MinusTwo - Check into rechargeable hearing aids. Right now I fumble around with my hearing aid batteries and putting in the domes, but it’s gotten easier over time.
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Thanks NSBrown. The lady who did my exam before COVID said that non-prescription hearing aids were 'just around the corner' so maybe I should wait. Frankly I need to re-schedule this just like every other doc I'd planned to see since February 2020.
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-2,The inexpensive non-prescription HA's are already moving into the market. However, they are not adequate for people with severe and profound loss, or those with wild slopes on audiogram.
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Thanks MCBaker. It's time to make an appointment at Costco for another full exam.
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Nsbrown, looks like I can increase my B12. Thanks for posting what you are doing. I completely forgot about magnesium. I stopped taking all the vitamins quite awhile ago. I was having indigestion issues and suspected all the vitamins were compounding it and questioned if they were even helping. Thanks again for your input. Keep us posted on the acupuncture.
Hi Minus. I think about you often too. That is amazing that you were able to walk that far. Yeah, my feet are pretty numb too and I have pain but my biggest issue is the weakness in my legs. No way could I ever walk that far. Wish I could. At my condo they have a little gym but that has been closed since Covid. I can't build up any strength in my legs with walking but one of the sitting leg machines would be useful. They have these little bike like things that you can buy. You can sit on couch or wherever petal along. One of the brands is Cubii. Have you seen them? I wanted one and my son laughed at me.
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I built up by using hiking poles. I got an inflamed nerve in my left arm/shoulder and doctor told me to stop using them, and I have been doing ok. you would do better going to a gym. They can help people with health concerns just as well as weight-lifters and endurance athletes.
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Not Broken: What does your son know... Probably not much more than mine. Don't forget - even though they are our sons and we love them dearly - they are still of the breed of "men". Just because we don't think like they do doesn't make them right. OK - off the soap box now.
There are several people on BCO using Cubiis. One lady named Mara on the threads has been using a Cubii for more than a year and she loves it. In the beginning of her saga she couldn't walk far either, but now is easily doing more than 10,000 steps a day - in addition to the Cubii.
McBaker - I carry a large wooden walking stick that I can use for balance and also to keep away stray dogs. I agree about a gym, but I'm not comfortable going back yet. The Silvers Sneakers class I was attending twice a week before COVID s back up to 27 people in a relatively small room and NONE of them wear masks. Sorry - not for me right now.
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NotBrokenJustBent - I only take 250mg of magnesium oxide with dinner. I’m still having low magnesium issues from chemo and any more than 250mg causes me some GI issues.
I looked at the Cubii online. Similar concept to a recumbent elliptical without the arm workout. Anything to get the blood flowing in our feet is probably good.0 -
Almost never crowded at the Anytime Fitness that has the Silver Sneakers contract. Too rainy today, I vegged out. 4600 steps, mostly because my coach (canine variety) challenged me.
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I forget, are we allowed to post links?
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Yes, we can post links
I do so all the time.Blessings to you,
Esther
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I was going to post some links about supplements that are good to treat neuropathy but I am guessing it is old news and nothing you guys aren't already familiar with.
I was dosing myself with all kinds of supplements a few years back to no avail and actually worried I was doing more harm than good. I ran everything by my MO and she had no problems but in doing further research after spending a small fortune I found that two supplements I was taking may actually be dangerous to BC patients. I forget the one supplement but it raised estrogen levels, and the second one is Benfotiamine plus thiamine. Apparently some studies says it reduces cancer cell proliferation but other studies say the opposite and that it promotes growth. Needless to say I got spooked, discouraged and threw out the damn six bottles. (So much for saving money by buying in bulk).
Anyway, I am back to getting serious about this infliction. I find myself getting very lonely and feeling isolated. I want to join the living but it is so hard to make new friends and pursue new interests and hobbies when my mobility is so limited. I want to try the vitamin and supplement route again. I would love to try one of these neuropathy products that has excellent reviews and they would actually save money over buying supplements individually but they all contain very high levels of the Benfotiamine so I am hesitant but very tempted. Thoughts? Apparently this thiamine is an important component in all these neuropathy products. 🤔
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NotBrokenJustBent,
have you tried pharmaceutical interventions like duloxetine or gabapentin? Technically I think duloxetine is the evidence based one but I'm on gabapentin 300mg bid and it's been ok for me.
I've seen B6 (pyridoxine) recommended more than B1 (thiamine). I take B6. Was taking 100mg but switched to P-5-P recently (the active form of B6) and am just using 50mg because I thought it was upsetting my stomach at higher dose. I think I'm ready to bump back up to a 100mg.
Exercise is also showing up as helpful in a couple trials - I think we need blood to flow to those areas, so the nerves can get their nutrients. Nerves can regrow sometimes but they grow very slowly.
I've been on a taxane for 18 mos now and I've got some very mild neuropathy - what they call Grade 0-1.
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B-complex is a must. I also take magnesium oxide-- good for cramps. I have discovered that enjoying the things I can do and working from there is the best way to cope. I cannot run, but I can walk. So I walk my dog and get on the treadmill at the gym. Today I made spiced peaches-- this time with cinnamon, cloves, and star anise. Just the rhythm of filling the jars, putting on the lids, and putting the jars back in the kettle of hot water is fun, and it gets me up on my feet. Don't stay stuck grieving the losses-- branch out and explore the other things you can do. All those supplements cost extra money that you can enjoy spending elsewhere.
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NotBroken: Hang in there, something will click and make it better. Have you tried massage and/or acupuncture? That might help. A couple times a week, I soak my feet in nice smelling Epsom salts in a heated foot bath. It feels so good and helps me to get to sleep. I also have a variety of creams that I massage my feet with each night. Right now, I alternate between lidocaine, CBD and Australian dream. Not sure if they help but the massage does. It gets the blood flowing to the feet and the pain goes away for awhile. During the day, I stay busy so I don't really notice the neuropathy until I settle in at night or have my feet elevated. Good luck and keep experiementing.
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NotBroken - I forget - do you have pain or just 'dead' feet?
My neurologist re-emphasized last week that there are a number of things that can help with pain from neuropathy - prescription & other. There is nothing that will bring the nerves back. Any improvements happens in the first two-three years - and that's usually just "better" not back to "normal". I'm grateful I improved enough to zip & button my own levis. I've been taking B-6 and B-12 for 7 years. She wants to do blood tests on both since while some B-6 can be good, if it's too much it can make the neuropathy worse. She said there are no valid studies that acupuncture helps the numbness (except again - it might help if you have pain). She said the same for most supplements.
So I live with blocks of ice for feet and pretty much have to watch every step I take since I can't feel the ground. And the ends of my fingers don't have enough feeling to do small tasks - like changing batteries in hearing aids (which is why I haven't address the hearing problem).
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Insurance won't pay, but compounding pharmacies can concoct creams that can reduce the pain. I quit using it, because my feet are more dead than painful that the slightest injury will hurt twice as bad as before. Minus two-- they have rechargeable hearing aids. If you don't keep up with your hearing loss, you will be more likely to get dementia at a younger age.
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Thanks MC Baker. Yes, rechargeable hearing aids are on my list to explore in the fall (or whenever this latest round of Covid becomes less acute). I can actually hear most everything quite well except some actors on stage (& I'm not going to play now anyway), and my son - who only comes to visit once every two years so & refuses to speak up. I haven't had a problem with any other people I'm around. Since I live alone - who cares how loud I play my music? Which probably caused the problem in the first place over the years since I never played soft music.
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