Vent about Permanent Neuropathy
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Oh, I totally forgot about water aerobics. Thanks Hiking Lady. That is the best possible exercise. I go three times a week in the summer when our community outdoor pool opens. I do wear 'water shoes' so I don't hurt the toes I can't feel.
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My nearby community pool has a couple of deep water lanes reserved every morning for deep water exercise. I’m in 6-8 foot water depth, and never touch the bottom in this type of exercise, and there are also people who do the water exercise where they’re standing in 3-4’ depth in another part of the pool. My knees and hips and bad foot really like the deep not-touching non-impact exercise. Unfortunately, it’s not as good for weight-bearing bone-density building, but there is some bone benefit because of muscle strengthening (which puts a ‘load’ on bones and stronger muscles can help with bone density.). After BMX and reconstruction, it’s taken awhile to work up to good upper body strength for actual swimming, and I’m finally working back to that. I like doing deep-water exercise because I can tailor my workout to the muscles that need to be built up. I treat it like a weight-room work-out, except it’s also like being weightless in outer space. A really pleasant feeling! Daily exercise keeps me feeling okay, for sure.
I play classical piano in a trio with a violinist and cellist, as one of my hobbies. Neuropathy and numb fingers is not my favorite post-cancer-treatment souvenir. It’s not impossible to play, but I feel kind of strangely disconnected to the keys, since I have so much fingertip numbness. WAAAHH, sad about this, and glad to have found a safe forum for this particular venting!
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Sweetpea, everything that you described can be caused, directly or indirectly, by neuropathy. I have it, too, caused by chemo, and I've had it before, about 15 years ago. (The last time the cause was unknown, so the doctor just called it "idiopathic," which is doctor-speak for "haven't got a clue.") Like you, I have some numbness and tingling in both feet, and I have some in my hands as well. I've been able to get rid of the cane that I had to use for a while, but I'm still clumsy and slow, and going downstairs is still a bit of a challenge. I'm not having cramping this time around, but I did when I had neuropathy before, so I know what you are talking about. As for your knees feeling a little "off and uncomfortable" and your hips feeling "iffy," I don't think those things are likely to be a direct result of your neuropathy, but people with neuropathy often move differently than they used to in an effort to maintain their balance and compensate for weakness and other effects of the neuropathy. If that's true of you, you may be putting different stresses on your bones and muscles than you used to, and that in turn could explain why your knees and hips are bothering you. The only way to know for sure what's going on is to consult a doctor or physical therapist who can watch you walking and coming down stairs and so on, and then tell you if you are doing something that could be stressing your knees and hips. For whatever it's worth, I was told to focus on moving as normally as possible at all times, which meant, for example, that I had to pay attention to keeping my feet a normal distance apart as I walked rather than spreading them farther apart in order to make balance easier. At first, I found that hard to do, but I'm much better at it now.
As for exercise, it is sadly true that it can't heal nerve damage. But what it can do is help you function better with whatever degree of nerve damage you have. Any exercise that you enjoy will help, so if you liked the stationary bike that you used while you were in physical therapy, I think getting one of your own would be a great idea. I have one and I love it. I have also found it helpful just to practice whatever movement is giving me trouble. For example, I try to practice stepping up and stepping down a few minutes every day, and that has helped me move more confidently coming down stairs and stepping off curbs. (Of course, stepping up and immediately stepping back down on the stairs looks a little weird, so that's one exercise I do in the privacy of my own home. That way only my cat thinks I've lost my mind.)
On the whole, it sounds like you are doing the right things to minimize the damage caused by neuropathy, and you are asking the right questions. If you continue to have cramping, you might ask your doctor -- if you haven't already -- for a recommendation for something to help with that. And, as I suggested above, if your knees and hips continue to bother you, it might be a good idea to have someone watch you move to see if you might be unintentionally moving in a way that puts new stresses on them.
Finally, one useful thing that I learned the last time that I had neuropathy is that nerves do heal, assuming you are not continuously annoying them, but it takes a L-O-N-G time. Nerves heal so slowly that you will find it difficult to detect any progress if you are comparing today to yesterday or this week to last week. Try instead to think about how you were doing a couple of months ago. The chances are you are doing a little bit better now, and a couple of months from now you will be doing a little bit better still. And one day you may notice your feet are not numb anymore, and you haven't had a cramp for a while, and something that you can't do now, or can't do well, is pretty easy. That day might not come this year, but if you can avoid new damage to the nerves, so that they have a chance to heal, you should get there eventually.
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RockyMountain - I don't want to be negative, but my neurologist and the consult with a second one both said the same thing. (And I'm at a premier medical center) Your neuropathy may get better over a couple of years (2 or 3) BUT better means better than where you are after treatment. It does NOT mean you will ever be back to where you started. Better but not likely ever 100% healed. Some damaged nerves will never regenerate. I'm 5 years out and can certainly attest to that. I've tried to look for realistic goals. When might I be able to take a hike on a defined forest trail again - not when can I scamper forward on a sailboat underway to hoist the sails.
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I have found that acupuncture has significantly helped with the neuropathy in my feet. It took weekly visits at the cancer center for 4 months but vast vast improvement just a little tingle left occasionally.
My hands have been through a lot. Acupuncture has significantly helped but both of my bicipital tendons in my arms and my shoulder complex are all messed up. I went to someone who does myofascial release also trained Iymphodemia. Now three months later i am doing much much better.
I also continue on a plant based low fat diet that I has helped
Last I do B12 shots every 10 days and keeping blood sugar under control. Chemo pushed my blood sugars Into prediabeties. Alpha lipid acid and gamma linolenic ice acid are also recomended
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I have found that acupuncture has significantly helped with the neuropathy in my feet. It took weekly visits at the cancer center for 4 months but vast vast improvement just a little tingle left occasionally.
My hands have been through a lot. Acupuncture has significantly helped but both of my bicipital tendons in my arms and my shoulder complex are all messed up. I went to someone who does myofascial release also trained Iymphodemia. Now three months later i am doing much much better.
I also continue on a plant based low fat diet that I has helped
Last I do B12 shots every 10 days and keeping blood sugar under control. Chemo pushed my blood sugars Into prediabeties. Alpha lipid acid and gamma linolenic ice acid are also recomended
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Hi Ladies,
Everyone has great ideas on how to cope with this insidious side effect. My neuropathy is in my feet - I finished chemo almost 2 years ago and have seen about a 30% improvement. Acupuncture worked well. Gabapentin was good, but I switched to Cymbalta - which treats anxiety AND neuropathy, and doesn't make me drowsy.
My reconstruction surgery seemed to cause a setback with my feet - the “pillows underneath your toes" feeling came back and the foot pain started waking me up at night again. But 8 months later I'm about back to where I was before recon, thankfully. That surgery even brought out neuropathy in my fingertips, almost the first thing I noticed when I woke up. But that's almost gone now. It was an unexpectedly long surgery so maybe all that anesthesia had something to do with it.
Well fitting shoes determine how long I can comfortably stay on my feet - so now my shoes need to have good arch support, lots of toe room, and v v cushy insoles. Had to let go of some favorites bcs they didn't meet the new criteria - but it makes all the difference.
Best wishes to everyone~
Lanne
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Minus Two, thank you for your comments on my post. You made some good points, and I think that my previous remarks need some clarification. To begin with, I certainly did not intend to suggest that everyone with nerve damage can count on 100% recovery. I am well aware that many here have permanent pain and disability caused by neuropathy, and I am also aware that the treatments currently available to them are less than satisfactory. Those who are in that situation have my heartfelt sympathy, and i very much hope that better treatments for neuropathy will soon be discovered. I also have no reason to doubt that even neuropathy that is less severe can result in permanent physical harm because some nerves are too severely damaged to recover. However, when I had my previous bout of neuropathy I was told that (1) nerves that have not been too severely damaged can recover if the cause of the damage is identified and corrected, or if it stops operating spontaneously, and (2) if the nerves recover sufficiently, the symptoms of neuropathy will go away. That's what happened to me. The numbness, the cramps, and the other symptoms of neuropathy very gradually lessened, and one day, maybe two and half or three years after I first started having trouble, it occurred to me that I didn't have numbness any more, and I hadn't had a cramp for a while, and I was feeling pretty normal generally. Now I have neuropathy again, but the cause -- chemotherapy -- has been removed, and the neuropathy is gradually lessening, just as it did years ago. I am optimistic enough to look forward to the same final result: that one day, maybe two or three (or more?) years from now, I'll notice that I don't have numbness any more, and I'm feeling pretty normal. Meanwhile, I'll keep working on my exercises, because that helps me overcome the problems with strength, balance, and coordination that seem to go hand-in-hand with neuropathy. So my (revised) message is this: if you have severe neuropathy, my experience may not be relevant to you. But, if you have mild-to-moderate neuropathy, like me, and if the cause of your neuropathy has been corrected or removed, then your nerves may recover sufficiently to eliminate your symptoms. And, exercise can't heal damaged nerves, but it can help you to overcome some of the problems caused by neuropathy, such as poor balance and coordination. I hope this helps!
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Nice to have found this thread . I have a few numb toes and foot cramps due to neuropathy after cheno.. I do ignore it most of the time. I appreciate the suggestions for taking magnesium for the foot cramps. Might even help with the hot flashes from Tamoxifen. I wish my MO had mentioned amino acids during chemo to maybe avoid these numb toes. I will try them now to see if they help I do ride an exercise bike and walk and just ignore the symptoms.
I am most irritated by those "fake" rocks in your shoes when you are walking. Makes you think you are crazy sometimes. Usually it goes away after awhile.
Thanks for letting me vent since I have put up with this for almost 7 years now. I like hearing all of the suggestions in this thread.
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hey minus two and all, I still have neuropathy, tingling comes and goes. I used to walk for miles, now can walk but legs get weird weak feeling and i have to rest before going again. Doctor who tested my nerves told me when nerves are badly damaged they just don't respond well to muscle's demands. Knees are very painful because I went to trainer/PT to build myself up and he had me do a movement I wasn't ready for. Pain ever since. One doc said water exercises, another gives me shots which sometimes helps, sometimes not. Nothing helps the weakness.
That's my rant!
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sorry I got that backward. I should have said: I make the demand for movement, the nerves try to signal the muscles. If nerves are damaged this doesn t work well. This is how it was explained to me.
Mary
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Yes Mary, that is my main complaint. While the rocks in shoes, tingling and numbness are an annoyance, it is the terrible weakness in my legs that is life changing. I know I need to be more active and get some exercise but even walking any distance is a challenge. Since BC almost 6 years ago everything has fallen apart and one thing has lead to 6 others. So discouraging.
Hey Minus, I see I owe you a PM. Soon.
Happy Easter to those who celebrate.
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NotBroken - miss you girl. Glad to see you're still here. Sorry to hear about the weakness in your legs.
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I have worked my way up to one mile at 2 MPH on the treadmill. After my weight workout and floor exercises, I can get another third of a mile. I no longer hang on to the rails of the treadmill-- reading a paper book has helped that. I am also working on balance and ankle strength with a half-sphere thingy with one flat side to stand on. My feet are generally uncomfortable. I am going to try hot Epsom water soaks, although some misgivings about that because of seven toenails that do not look very good.
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I don't think I really noticed the weakness untill I read this thread. I could not figure why I was so tired after walking and now I know. Thanks ladies. MCBaker, I would slowly build up your time on the treadmill. As far as the toes, I have toenails that look odd, but then they have always been that way for 6 years now. Epson salt spsound like a great idea. Would be very soothing. NotBroken, I would build up your endurance as well. That's what I do. I can walk almost 2 miles if I want to. I did more than that at Disneyworld during the day but I had motivation. Keep moving ladies.
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My right ankle is weak from neuropathy before diagnosis, and I have been wearing an AFO summertime and for gym (boots in the winter). I have expensive arch supports. Yesterday I went to Walmart to find some workout shoes, but found none that would work with arch support. So I walked over to the strip mall and busted my budget with another pair of New Balance shoes. (They have a removable insole) So comfortable. I tried standing on my toes with the foot with the weak ankle, and had some success for a while-- however, not without touching something. Definitely not ballet material.
I think I could walk to the gym now, but if I have trouble completing the walk, I would be stranded for a while. Just not ready, the treadmill is security. I find that I am sore when I go to bed at night, but generally recovered when I get up in the morning. If I don't have a good amount of recovery in the morning, I skip gym for that day. Of course, there are days when I am too busy with other things.
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MCBaker, I use New Balance shoes and I do like them. I only wear that brand. I did buy an over the counter brace for my ankle which was not too pricey. Perhaps you might want to visit a podiatrist and if you can afford it to get molded inserts for your feet. Mine have been a blessing.
I do think driving to the gym and then getting on the treadmill might be the best plan. Why waste the energy getting there. There are days everyone wants to skip the gym which is fine. Just keep walking even in the neighborhood if you can like I do for just 15 minutes at a time most days/
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I got one for my left foot, which has that arthritic bump on the top. The brace has an arch support built in, so I have a top quality ready-made; wondering if the brace could be trimmed so that it functions as an arch support. But wouldn't want to destroy it as a brace until I know for sure that the ankle won't relapse. With the removable insole NB are made for people who need orthotics of one kind or another.
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MC - have you tried Hoka shoes? They saved my life. I could hardly walk down the block without being in excruciating pain, but now I can walk and stand in them. They are expensive, but so worth it to be able to walk
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Luv - HOKA is the brand my podiatrist recommended. Yes, they are expensive but like you - it's all I wear now. And I mean that literally - to work, to the store, to the gym & to symphony concerts. She did say some New Balance shoes were good if they had an extra tall & wide toe box.
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The tall and wide toe box on NB comes from the removable insole. But might not be tall and wide enough for some people.
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rockymountaingirl, Thanks for your information. I don't think I described things altogether right. I've had a little hip problem for decades, it seems, resulting from an old gymnastics minor accident when I was a teenager. About 20 years ago, I started really noticing it; it felt like the ball might fall out of the socket. Not really, but it forced me not to walk normally. Naturally, my doctor told me that since I wasn't exercising like I used to, I needed to go back to that. So I did and I also used my husband's soloflex. That was helpful then, but it went by the wayside. I also did the treadmill for a while, but lost drive to do it.
Fast forward to 2016 when I had to have a partial hysterectomy with a large scar and all of that went bye bye. After that surgery, I could only sleep (well) in a recliner. After a few weeks, I broke the first old recliner and had to buy a new one. It's not that easy finding an affordable motorized recliner that almost goes flat without tipping over to the back. I digress.
When I went to chemo, I already had problems with my feet and had been to a few foot doctors about it. I ended up with New Balance shoes and went from an 8D to a 9W or 9WW. Once chemo started, I told my MO about the new tingling and discomfort, but he didn't believe it to be neuropathy, at first. I went to a neurologist and others in the field and they came to the conclusion that I had neuropathy of at least the feet and perhaps the hands. They also concluded that one of my discs has a small leak which is causing more discomfort at times. That got me into PT for a few weeks and it really didn't help my back that much. I did not try accupuncture yet, but probable should.
Right now, I can't sit down on the floor like I used to without doing some sort of holding onto something, or bracing myself with my hands (not sturdy). I have learned how to get up without hurting myself. At work, though, I grab something that could be used as a short stool if I have to work on lower shelves. I really do need to get back into shape! Gonna see my new PCP in a couple of days (2nd visit), which brings me to my next compliment.
Lanne2389, I'm going to ask my doctor about Cymbalta. I'm taking Ativan on the rare occasion which she wants me to get off of. We weren't able to discuss it further last time since my medical file is about the size of the annual National budget book. I also get the feeling that we'll discuss diet and exercise. I couldn't be less motivated than I am right now. I want to blame it on the Femara. It seems that now matter how little I eat or how much I eat (as compared to before) I feel hungry 2 to 3 hours later, if not sooner. This can't possibly be if I consume a sizeable meal
In any case, thank you again rockymountaingirl. I will have them watch me take some stairs, etc. I really think I'm compensating to avoid discomfort, like you say. As for stairs, I do that too sometimes. My dog wants me to make up my mind where I'm going to be.
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Went to the neurologist today. My feet are very uncomfortable. Most any sensation is perceived as pain. I already had neuropathy before the Taxol, and have been on 2100 mg a day of gabapentin, and 100 mg of venlafaxine, for ages. Both are first-line meds for nerve pain. I refuse to take a tricyclic because of constipation. So, he wrote up a prescription for a topical cream with amitriptyline, ketamine, and lidocaine, to be prepared at a compounding pharmacy. What a hassle, but finally his nurse got the details ironed out. I have great hopes. He did tell me to cut down on treadmill for workouts, will have to discuss that with the trainer at the gym. I will be going to the pool this summer, it is a fairly short walk away.
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No one describes their CIPN pain like mine. Sure, I have numb fingertips and my feet burn sometimes, BUT it's the deep dull intense ache in my arms and legs that really pulls me down. I also get quick pain surges into my wrists, hands, ankles and feet but that comes and goes in a flash. I take 1200 mg gabapentin at night and because it makes me gabastupid, I also take duloxitine during the day. I decided to try life without the daytime med about 2 weeks ago and am regretting telling the pharmacy not to fill it this month. The aching pain is back with a vengeance. It must have been helping with hot flashes too because those have intensified. Anyway, I'll be back on it tomorrow and have learned a lesson about if it ain't broke don't fix it BTW, I am 5 years NED.
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My CIPN is slightly helped by a bunch of supplements that my MO has suggested. When I go off them, I am much more uncomfortable. L-glutamine, Alpha Lipoic acid, B-complex, (+ my usual Vitamin D and Ca), and my MO had specific guidelines for how much of each of those. Also, he and the triage chemo nurse both said that it takes a bunch of months of these supplements to start helping, which has been my experience, actually.
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Blownaway
I'm also on duloxitine/Cymbalta. I have found that curcumin/Tumeric helps with nerve pain and glucosamine helps A LOT with bone and joint pain. Give those a try? I was able to go off gab with this mix but my nerve pain doesn’t sound as tough as yours
Oh and for my duloxitine, I ask for 20mg capsules and split btwn am and pm. Not sure if it does anything but it makes sense to me.
Lanne
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This is one of those "Has anyone else ..." posts. I don't recall the exact timing relative to chemo (AC+T) , but I watched as the nails on my right foot changed from a rosy pink to a pale shade appropriate for an extra on "The Walking Dead." (In contrast, the nail on the big toe on my left foot is a lovely dark grey.) There was a definitive line that made it clear the change was from chemo. I'm now three years out from my diagnosis so this appears to be permanent. Anyone else?
I finally got motivated to take advantage of the Livestrong free 12 week exercise program at the YMCA near me. When I walk on the treadmill, I find that I must keep both hands on the hand rails. If I let go, my gait changes awkwardly with my steps seeming to move left and right almost as much as forward so I feel like I will fall. I've also been doing chair yoga with this program. After several weeks, I still can't stand on 1 foot for even three seconds. Prior to cancer treatment, I did physical therapy for a herniated disc and with just a finger tip lightly touching a wall to ground me, I could stand for 30 to 60 seconds. Shortly after completing all my cancer treatment, I had done physical therapy and was disappointed to fail all three balance tests, both before and at the conclusion of therapy. Have any of you enjoyed substantial improvement in your balance, even a fairly long ways out from your treatment ? I guess I'm looking for a glimmer of hope that with continued work, I'll be able to do something as simple as walking on a treadmill without a death grip on the rails.
Off-Kilter Lyn
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VLH, I too lost a lot of ground on balance when I went through chemo. Prior to chemo my balance was at least OK, and I was actively working on it to improve it. (I understand that balance gets harder as you get older, and that was certainly true in my case.) After chemo I had to have a cane just to put one foot in front of the other without falling over, and I was unable to stand on one foot for even a nanosecond. Very discouraging. I am now 10 months PFC, and my balance is still not a thing of beauty, but I can definitely see some improvement. At least I can walk pretty normally and I can stand on one foot for a few seconds. I think balance is going to be one of the hardest things to re-establish after chemo. I am again actively working on it, both at the gym and at home, and I do think that it's helping. Do you have access to a personal trainer or therapist who could help you address your balance problems specifically? If not, one of the things that I have found useful is a book called "Better Balance for Life," by Carol Clements. The exercises are simple ones that you can do at home. Some of them are still well beyond my abilities, but the ones that I can do have been helpful. As for the treadmill, I wonder if the motion of the treadmill is making it harder for you to maintain balance? I know that if I try to move faster, it gets harder for me to maintain balance, but that might just be me. In any event, I think you can improve with continued work, and I wish you the best as you go forward!
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VLH - I too used a cane while I was in active treatment after crumpling at the elevator one day. 5+ years down the road from chemo, I have permanent CIPN (chemo induced peripheral neuropathy). I've been to neurologists, physical therapists, occupational therapists - you name it. Yes, it's a little better than it was. For example, after treatment I could not even do up the zipper on my jeans due to 'dead' fingers. Fortunately I do not have debilitating pain - mostly just dead feet, like blocks of ice. The balance problem is significant. I can walk with no problem as long as I watch where my feet are going (because of course I can't feel cracks in the pavement, etc). I can not stand on one foot even after continual 'conditioning'. Yes, I too have to hold the side rails on the treadmill. I go to a Silver Sneakers exercise class twice a week, aqua aerobics twice a week and a chair yoga class once a week. Again, I feel so grateful that I don't have the pain that many do.
As for nails - both of my big toe nails detached from the nail bed. I did not totally lose them, but because they were no longer completely attached it allowed a fungus to get underneath. Eventually a podiatrist had to cut them half way back to the cuticle where they were no longer attached to the bed. Apparently I was continually re-injuring them by wearing shoes w/o a big enough toe box or enough support. It takes 12-18 months for a toe nail to grow out.
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Anyone tried laser treatments for peripheral neuropathy? I just started a program yesterday involving laser treatment, meeting with chiropractor for adjustments and work on balance issues. Also have an infrared machine I use at home and a type of electrolyte foot bath with a machine that looks like a TENS unit. Hope to get some relief from painful neuropathy in feet. My hands only have mild neuropathy
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