Vent about Permanent Neuropathy

It is so expensive, I doubt my insurance would approve it. I am on 2100 mg, and the sheer volume of it in my pillkeeper is irritating. I have my kindle, fitbit, and computer set with alarms, so rarely miss a dosage, unless I am out and about. Even though I carry my 2:00 pills with me. I may ask my PCP, though.

Just a little update. I started a plant based diet but at close to the same time I also started acupuncture for my feet at the cancer center. I have had tremendous improvement. Now my feet do not wake me up at night and I get a bit of a buzz in them and some occasional numbness but hardly noticeable. My hand are improving as well but not to the same degree. Still I am very impressed with the acupuncture it might be worth looking into if you have this in your area.

I think that I'm new to this group/thread. My chemo ended last July, but the neuropathy began soon after the first infusions. I went to some specialists, but I'm currently untreated. I did go through some PT last year, but I wan't really receiving any benefit from it for the neuropathy. I have numbness in both feet, some tingling and the rare pin/stab pain in a toe, now and then. I also get foot cramps which sometimes happens when I'm driving.

As for diabetes, I'm borderline and the bloodwork is odd. I get good readings when I eat (test 2 hours after meal), but after fasting, not so good. So I'm trying to eat smaller, more frequent meals to not have to fast so long.

Going down stairs can be a little tricky too. I don't feel confident going down without stopping at each step. the knees feel a little off and uncomfortable. Is that possible with neuropathy, or could it be something else? The hands also cramp up a bit if I'm typing a lot at work or hand writing, especially. And now for more fun, both hips are feeling iffy, whereas only the left one was a problem before.

I'm thinking about buying a stationary bike or exerciser. Bad idea? While in physical therapy, it didn't seem to hurt while using it. Any thoughts would be fantastic. Thank you.

sweetpea - There really is no 'treatment' for neuropathy other than treating pain if you have that. PT is useful in learning how to compensate for lack of feeling &/or balance. My doc has me on magnesium for foot & leg cramps - 250 mg twice a day. Like McBaker - I go to a local gym. I walk the treadmill & ride a stationary bike, but mostly attend Silver Sneaker's classes twice a week. Exercise is usually good but check with your doc.

RE: exercise

I like my deep-water aerobic exercise routine, vertically in the deep end, head out of water. Walking, x-country ski moves, all upper body and lower body muscles can be worked. I use ankle cuffs (the necessary vertical stabilizing works my core) + foam barbells, and I go through every muscle group, and also get aerobic work if I speed it up. I have some knee and hip arthritis, and I had a foot rebuilding (5 fusions) due to mid foot arthritis one year ago. Age 61. Therefore, I’m trying to work out without my treadmill, and avoid walking on concrete sidewalks. I find that the stronger my muscles are, the better my joints tolerate the AI stiffness.

My neuropathy is in my fingers and hands: no pain, but loss of sensation. Tingling. I am taking MO-suggested amino acid supplements. Trying to stay hopeful that maybe my neuropathy will resolve. Grateful that it’s not pain, and also that I can walk okay—I had numb feet during chemo, but not after. Glad to have found this thread, and I’ll keep reading it

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!

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.

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

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!

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!

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.

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.

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.

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.

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.