Vent about Permanent Neuropathy
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hope to get back to more exercise after this junk
Yoga is on my list, doing chair class now so hoping to do more after getting stuff fixed
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thanks
Should have done this before but wasted time finding doc
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Just talked to a PT friend who has attended training on LLT (low level) laser treTment. She said only a small amount of places have it as one costs $20,000 but a study was done specifically on CIPN snd people got better after 3x week for i think 6 or 8 weeks
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I believe LLLT is another name for the Anodyne Therapy that I got a month or two after the onset of my CIPN. I had 3-4 treatments and do feel like it might have done me some good at the time, but mainly in the sense that it probably increased my circulation to allow for the best healing possible to take place at that time. If there is anything you can do for your hands and feet that promotes good circulation, that is going to give you a better chance for your body to try and repair itself. Some people are just not as damaged as others, so a therapy like this might work more fully for them. I think the therapy helped me avoid the pain that some of you have (I have mainly just numbness now) but my nerves are still damaged and I don't think I will ever make it 100% back to normal. Bottom line: LLLT can't hurt; might possibly help.
(BTW, Some insurances don't cover that kind of therapy outright, but if it is given within a 1/2 or 1 hour PT session, you might be able to get a blanket coverage for it that way.)
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That's too bad that you could not at least try the therapy and see if it would have any effect for you.
That is what I was thinking, that for people who cannot walk well and otherwise get the foot circulation going, the LLLT/Anodyne treatments might be a an alternative.
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I feel kind of the same way, BB, that now my brain has learned a way to compensate for the lack of feeling I am left with. I am now, at least, to the point where I can get thru' a whole day and not give a thought to my CIPN. It took me 3+ years to get this far. I am one of the lucky ones that I am not impaired by mine anymore. I do still have numb toes and other small areas that may never come back but I can live with this.
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Practical choice, BB. I hope you do get to put on those heels and toss those wigs one day.
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That sounds quite naughty...and quite possible. Definitely one way to rock the "new normal."
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Bosum - that certainly perked up the thread. Sling backs? Thanks for memory. After I fell & broke my arm, I gave away all of my heels except one pair of "kitten" heels. It's unlikely I'll wear those, but in case of emergency....
I agree, my feet are numb but I feel fortunate not to have pain most of the time.
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I saw a rheumatologist who checked me for everything and found nothing so this proves all my pain is just neuropahy. He suggested I try Cymbalta and prescribed the generic. It has taken my pain level from an 8 (on a scale of 1-10) down to 0. I take it in the morning and contine to take 600 mg Gabapenin at night. Hope you all get some relief also.
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Blownaway, Are you on Tamoxifen? Cymbalta has a moderate interaction with that. They compete for the same liver enzyme, so it may lower the effectiveness of the Tamox.
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elimar - yes, I take the tamo at night and cymbalta morning. My onco prescribed it at the suggestion of the rheumatologist. She didn't mention any problem with taking both. Hope it works out because I can't live in that much pain.
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Hi, I did have to stop half way though chemo treatment to have surgery. They put circulation devices on your legs. That really helped. Took pain meds and continued chemo. Now, I take a muscle relaxer and that keeps the electric shock stuff under control.My fingers just have loss of sensation. I am extra careful.
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Blownaway, But isn't your Cymbalta time released capsules? Anyway, my PCP gave me Cymbalta, knowing I was on Tamox.; and my MO knew I was taking the Cymblata too. Neither one got a hair out of place over that BUT when I mentioned the interaction to the PCP, he looked it up and saw the liver enzyme connection. THEN, he didn't think it was such a good idea. My info came from here:
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hi jcpries, I am on radiation treatment right now, will finish mid December and see my oncologist in feb, last time I saw him I told him about the pain and numbness in my fingers he said it was too soon after chemo, but there was a possibility of never going away, how do you deal with the loss of sensation in your fingers? The other day I burned myself
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- That's awful iz1999.Ive heard about people dropping things and tripping. I clean homes part time now and have to move a lot slower. If I don't, I drop stuff to. Luckily I am retired and just don't do as much. My feet are a different story. It's like walking with sand in my shoes.Very strange feeling, not fun.The worst is flipping through paper. My feet are slightly better and the methocarbonal help.Do you get charley horses where you didn't get them before?
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jcpriest - I never associated the 'charley horses' in my calves at night with neuropathy or my "dead" feet. Anyone else? I'll have to research that.
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hi jcpriest/bosomblues, my "charley horses" have gotten better since I finished chemo, they were so bad, my toes bother me with closed toe shoes, since I've been using sandals when I go to my appointments am ok, but now with the cold weather coming see how I do, here at home am always barefooted, but my concern is my fingers I have seen no improvement since I finished chemo. I drop stuff too, specially in the kitchen I had to really slow down and that bothers me a little but what to do
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iz1999 you have a point about the weather. My hands aren't noticeable in the summer . I really glad they don't hurt. What's dead feet?minus two.
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jcpriest - I have no feeling in my toes or the balls of my feet. Just dragging them around like blocks of ice. Some days this lack of feeling goes up my calves but I can't pin down any direct causes. Fortunately I don't have any bad pain except charley horses that wake me up maybe twice a month. I'd guess 20% improvement after 3 years so not great.
As for fingers, after 3 years most of my feeling has come back. Sometimes there is tingling & numbness, and I can't ever really "swipe" a computer screen with any accuracy, but I can play with knives again.
IZ - my solution for shoes in the winter is Easy Spirit Travel Times. They slip on like clogs, have fairly thick & cushioned soles and don't seem to pinch anywhere now that my big toenails seem to have finally re-attached. My alternative is Sperry Docksiders, but there isn't as much cushion. I wore SAS sandals all through chemo with thick socks. I know, not a fashion statement, but....
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That's a good way to tell about our progress...I would say that compared to how I was three years ago, I am maybe 70% improved. On a really good day, it may even seem like 80%, but I have bad days too. I know what MinusTwo means because my feet felt like blocks for a while early on, but for more than a year now they have returned to feeling like feet...weird feet but, at least, feet and no longer blocks.
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Minus Two I am so sorry to hear it got so bad for you,but it's nice to hear it's better.Its funny how sometimes when you suddenly realize ,boy I think this better. Like you miss the forest because of the tree.Elimar, It sounds a little stormy your way to. I am tired ,going to bed.I hope we helped you loveloons
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So weird BB. My neuropathy in my feet is so much better on cold days! I really only notice, now, when, I hike over an hour in warmish weather. I use to have to stand on egg crate material if I even stood on cement floors. They use to burn when I put my feet up (going to bed at night). I saw improvement up to 3 years out of chemo AND religious use of Garden of Life Vitamin B12 Organic Spray.
I also had it in my fingertips, but the only thing I seem to have left from that is dropping things a lot. I don't feel like it impedes my dexterity, otherwise.
There is hope, but if I don't use the B12 spray, the symptoms become much more apparent.
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BB and Quinn: Why do you use B-12?
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I use it, too. It helps with neuropathy. Some chemo meds will deplete B12. The neuropathy I had with Taxol is gone, but I continue to take it. From their experience, I may not stop.
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My neurologist told me to take B-12 (1000mcg) and B-6 (100mg) for neuropathy. I'd be afraid to quit taking them. My fingertips have mostly resolved. They are occasionally numb but it's not a problem except for swiping a smart phone. Lucky I still have a flip phone. My feet are still mostly dead like blocks of ice from the arches to the toes. Most of the time I can feel my calves & heels now - woo hoo. Since I'm 3 years post taxotere & adriamycin, and 2-1/2 years post Herceptin, I can't imagine it will get any better. I'll go see the neurologist again sometime next year for a work up.
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Good to know.I'm on it!
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gardengypsy - my PCP told me to use the spray I mentioned above. She is a holistic doctor. It was not my MO who told me. I do not know why - honestly, but IT HELPS!!!
I ran out of it once, for 3 weeks as I kept forgetting to buy, and my neuropathy definitely got worse. And then it got better when I resumed my daily dose of the spray (sublingual, but I just spray into my mouth). It was not my imagination. It helps me.
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well my nueropathy seems better lately, but I just had surgery for hydrocephelus and that has changed lots of things of late. I do take nuerontin and feel that helps my feet
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Thanks! I will ask my onc about this. I'd do anything to get off the Gabapentin. I think it's making my chemo brain much worse.
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