Vent about Permanent Neuropathy

Options
1…4647495152…78

Comments

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2016

    Oh BlownAway - I am so sorry. Hope the Cymbalta works for you.

    · Share on FacebookShare on Twitter
  • proudtospin
    proudtospin Member Posts: 5,972
    edited October 2016

    good luck and hope it helps

    · Share on FacebookShare on Twitter
  • Katmil426
    Katmil426 Member Posts: 15
    edited October 2016

    I had pretty severe neuropathy in my fingers and toes after chemo. Mine was the kind which was numbness/pins and needles rather than pain. It was VERY bothersome and affected my quality of life a lot. My acupuncturist has been following a protocol with needles to treat the neuropathy for over a year now. She also added in an infrared light several months ago. My neuropathy has improved quite a bit during this time. I no longer drop items and can put on my earrings and pick up small things. I still have some numbness at the ends of my fingertips and in my toes. I notice the problems with my toes in some shoes more than others. A few weeks ago I took a long walk wearing my hiking hoes and came back with a horrible-looking (and painful for a few days) blood blister on my big toe. I think this happened because I still cannot feel my toes properly and did not realize my shoes were rubbing the skin.

    Good luck to everyone else who is experiencing this issue. I would highly recommend acupuncture. I take many supplements, and I added ALA (alpha lipoeic acid) since chemo because that is also supposed to help nerve damage.

    · Share on FacebookShare on Twitter
  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2016

    Bosum - HOORAY for a better place. Yes, we'll all take whatever good times come our way. But I do understand your frustration when you can't find the cause & effect.

    Katmil - now that I'm trying to walk on a treadmill again (with numb feet) I get huge blisters on the balls of my feet after even 15 minutes. Hope the pads of my feet are just out of shape & they'll get hard again. My doc said to continue extra B-6 and B-12 in addition to a comprehensive multi vitimin.

    · Share on FacebookShare on Twitter
  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2016

    Funny Bosum - but you are exactly right. I was raised in California for heavens sake and I NEVER wore shoes. Nor in New Mexico, nor in Texas. Some people take off their bras when they get home from work. I took off my shoes. Once my feet went dead from CIPN, I stared wearing shoes like "everyone said" (dontcha love "everyone"?) to protect the feet I couldn't feel. So I KNOW you're absolutely right. I've just lost my pads. Guess I'll need to pad around w/no shoes again. (pun intended) Or can I be a diva and quit walking? Oops, not.

    · Share on FacebookShare on Twitter
  • proudtospin
    proudtospin Member Posts: 5,972
    edited November 2016

    I've done acupuncture for my back issues and the cost was about the same as for massage

    We'll I am having surgery on Monday for hydrocephelus

    Wondering if the nueropathy will change, can't walk without a cane now

    · Share on FacebookShare on Twitter
  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2016

    Proud - best of luck with your surgery. Hope the recovery will be swift. And wouldn't it be a miracle if the neuropathy decreased & changed for the better.

    · Share on FacebookShare on Twitter
  • proudtospin
    proudtospin Member Posts: 5,972
    edited November 2016

    trying not to expect too much regarding the foot sites


    Just hoping for better balance
    · Share on FacebookShare on Twitter
  • proudtospin
    proudtospin Member Posts: 5,972
    edited November 2016

    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

    · Share on FacebookShare on Twitter
  • proudtospin
    proudtospin Member Posts: 5,972
    edited November 2016

    thanks

    Should have done this before but wasted time finding doc

    · Share on FacebookShare on Twitter
  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited November 2016

    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

    · Share on FacebookShare on Twitter
  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2016

    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.)

    · Share on FacebookShare on Twitter
  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2016

    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.

    · Share on FacebookShare on Twitter
  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2016

    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.

    · Share on FacebookShare on Twitter
  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2016

    Practical choice, BB. I hope you do get to put on those heels and toss those wigs one day.

    · Share on FacebookShare on Twitter
  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2016

    That sounds quite naughty...and quite possible. Definitely one way to rock the "new normal."

    · Share on FacebookShare on Twitter
  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2016

    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.

    · Share on FacebookShare on Twitter
  • Blownaway
    Blownaway Member Posts: 760
    edited November 2016

    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.

    · Share on FacebookShare on Twitter
  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2016

    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.

    · Share on FacebookShare on Twitter
  • Blownaway
    Blownaway Member Posts: 760
    edited November 2016

    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.

    · Share on FacebookShare on Twitter
  • jcpriest0469n
    jcpriest0469n Member Posts: 86
    edited November 2016

    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.

    · Share on FacebookShare on Twitter
  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2016

    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:

    Drugs.com Interactions

    · Share on FacebookShare on Twitter
  • iz1999
    iz1999 Member Posts: 46
    edited November 2016

    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

    · Share on FacebookShare on Twitter
  • jcpriest0469n
    jcpriest0469n Member Posts: 86
    edited November 2016
    1. 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?
    · Share on FacebookShare on Twitter
  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2016

    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.

    · Share on FacebookShare on Twitter
  • iz1999
    iz1999 Member Posts: 46
    edited November 2016

    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

    · Share on FacebookShare on Twitter
  • jcpriest0469n
    jcpriest0469n Member Posts: 86
    edited November 2016

    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.

    · Share on FacebookShare on Twitter
  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2016

    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....


    · Share on FacebookShare on Twitter
  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2016

    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.

    · Share on FacebookShare on Twitter
  • jcpriest0469n
    jcpriest0469n Member Posts: 86
    edited November 2016

    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

    · Share on FacebookShare on Twitter

Categories