Cramps and neuropathy will it ever go away?

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  • just4Brooks
    just4Brooks Member Posts: 980 Member
    Hello Luckygirl2, I thought
    Hello Luckygirl2, I thought I’d let you know that I too still have very painful neuropathy being 2 years since last chemo treatment. I had oxaplatin, folfox, 5 FU, and 45 radiation treatments. Mine seems to be mostly in my feet and legs but hands are numb and cramp up from time to time. Make it hard when I’m trying to work with small objects. Last week I tried to start a small nut onto a small screw. After 40 minutes of trying and dropping the nut like 6000 times I finely had to give up. I was so mad but just started to laugh because I know I’m just lucky to still be here.

    Brooks
  • Luckygirl2
    Luckygirl2 Member Posts: 308

    Hello Luckygirl2, I thought
    Hello Luckygirl2, I thought I’d let you know that I too still have very painful neuropathy being 2 years since last chemo treatment. I had oxaplatin, folfox, 5 FU, and 45 radiation treatments. Mine seems to be mostly in my feet and legs but hands are numb and cramp up from time to time. Make it hard when I’m trying to work with small objects. Last week I tried to start a small nut onto a small screw. After 40 minutes of trying and dropping the nut like 6000 times I finely had to give up. I was so mad but just started to laugh because I know I’m just lucky to still be here.

    Brooks

    Know what you mean
    Trying to button my house or put those teeny weenie backs on earrings drive me crazy! I was on lyrica but stopped it about 10 days ago. Was bloating, cramping, and had horrible gas - that has all stopped but the pins and needle pain is kicking in in my feet and my hands cramp/ draw especially in the mornings. Trying to deal with chemo brain now....
  • joemetz
    joemetz Member Posts: 493
    side effect from neurpothy drug???
    could the craps be a side effect from the drug you're on for neurpothy???

    i've read a bit about that drug, and some people have strong side effects from that.

    i'm not sure what the side effects are... but it might be worth looking into.
  • ron50
    ron50 Member Posts: 1,723 Member
    tootsie1 said:

    Pain
    *hugs* I'm sorry you're having so much pain. I hate to tell you this, but I have had chronic (often very severe) pain since my resection over 4 years ago. I hope you will feel much better soon.

    *hugs*
    Gail

    Hi Luckygirl
    I was dx in 1998 with st 3c colon ca into 6/13 nodes. I had a very old reegime of chemo,5Fu and levamisole. It was not known to cause neuropathy. Now 14 years later I can't feel my feet or legs nor my left hand. It seems that it also promotes stone formation . I suffered acute pancreatitis a few years after chemo. It was a gall stone blocking my pancreatic duct.My gall bladder was removed. Since then I have suffered around 5 bouts of renal colic (kidney stones). It now appears that I am in the early stages of Diabetes possibly thanks to the pancreatitis. My kidneys are leaking protein,or should I say my right kidney as it has been the focus for the stones. I have taken lyrica and neurontin for the pain of the neuropathy. I built up to large doses of both but neither helped appreciably. They tried me on endep and morphine pathes and high doses of prednisone. All that did was to activate psoriatic arthritis and wreck my bones. I have spent nearly two and a half years on methotrexate (another chemo agent). It helped my kidneys nd arthritis for a time but then it lost its effect. I asked my rheumatologist the other day if he thought my arthritis would get much worse if I just took painkillers. He said yes no doubt about it. I now have to have bloods done to see if I have any anti-bodies for any of the heps or tb . Then he wants to put me on humira one of the biological arthritis drugs. He is an ex oncologist and firmly believes all of my problems stem from ca and chemo. He believes I may have eventually gotten some of the problems but chemo has hastened their onset.
    So the answer to your question is that perhaps it may never go away. For me it has just become a way of life. Enjoy life when you can and be patient when you can't. Hugs Ron.
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    cramps and neuroathy
    I had the cramps go away. last friday, about 2pm for about an hour. no - really it is not bad at all now ( 2 years later). neuropathy has always been a pain for me, sometimes literally. not to scare you and it can be a pain, but life can go on - in fact it keeps getting better for me.
    here is to hoping it keeps getting better for you.
    Rick
  • Luckygirl2
    Luckygirl2 Member Posts: 308

    cramps and neuroathy
    I had the cramps go away. last friday, about 2pm for about an hour. no - really it is not bad at all now ( 2 years later). neuropathy has always been a pain for me, sometimes literally. not to scare you and it can be a pain, but life can go on - in fact it keeps getting better for me.
    here is to hoping it keeps getting better for you.
    Rick

    Thank you
    Love your humor! Had to read your profile, I know your feeling about the poo! :). You made me smile today! Never thought I'd I'd spend so much time looking in my toilet! Hope all is well your way!
  • TMac52
    TMac52 Member Posts: 352

    Thank you
    Love your humor! Had to read your profile, I know your feeling about the poo! :). You made me smile today! Never thought I'd I'd spend so much time looking in my toilet! Hope all is well your way!

    Hi Luckygirl
    I had my last chemo treatment 13 months ago. I still suffer from severe foot pain. Some days are worse than others. It's worse when I where boots. I'm in the construction industry and need to wear boots a few times a week to visit jobsites. Thank god I dont have to wear them everyday as most of my day is in an office and I can take off my shoes and put on slippers when it gets that bad. (usually by 2pm) I hope someday it will go away but I'm not holding my breath. Looking at Poo has become very normal as I have a perm colostomy....sometimes I find myself talking about it to co-workers who look at me really funny????? Hey it's my life and I do have to say i'm happy I'm still here reguardless.
    Some days I want to scream my feet hurt so bad. But it's better to be on this side of the earth. I wish you the best. Tom
  • Luckygirl2
    Luckygirl2 Member Posts: 308
    TMac52 said:

    Hi Luckygirl
    I had my last chemo treatment 13 months ago. I still suffer from severe foot pain. Some days are worse than others. It's worse when I where boots. I'm in the construction industry and need to wear boots a few times a week to visit jobsites. Thank god I dont have to wear them everyday as most of my day is in an office and I can take off my shoes and put on slippers when it gets that bad. (usually by 2pm) I hope someday it will go away but I'm not holding my breath. Looking at Poo has become very normal as I have a perm colostomy....sometimes I find myself talking about it to co-workers who look at me really funny????? Hey it's my life and I do have to say i'm happy I'm still here reguardless.
    Some days I want to scream my feet hurt so bad. But it's better to be on this side of the earth. I wish you the best. Tom

    Feet and poo!
    I keep a pair of very warm and soft booties in my purse and I have two pair at work! As for my shoes, I wear for comfort pretty no.. Barly comfortable yes. I'm lucky to have a great boss, he never knows when he's going to find me with my shoes off and my booties on with them propped up on my desk! :) I've come to the conclusion I can live (operative word being live) this and if by chance I wake up one morning and it's gone...I won't miss it! :)

    Before CC, the thought of talking about my poo and poo habits was far from my mind, now it is seems perfectly normal, which should probably feel very weird, but oh well. Luckily I work with some great folks!
  • strattonmeier
    strattonmeier Member Posts: 6

    Hey joe
    You know, I didn't breakdown and cry when I was given my diagnosis, I think my surgeon was concerned I was not concerned enough because he kept repeating how serious it was. I figured since he put me on the surgery schedule before I was even out of the procedure room it was pretty serious. But boy have I cried a lot since then....everyone thinks I'm strong but I'm really not. But, I love to laugh and I try to do that as much as I can. If I didn't I'm afraid I would find myself in a very dark place unable to find my way out. I'm really very scared. I'm in " remission" but what does that really mean....is it just sleeping waiting to pounce again! Will it ever leave my thoughts, will one day ever go by where it is not in my head...see I could really get in a bad spot I really prefer to laugh, I don't want to cry anymore.

    Me too
    Dear Luckygirl2,

    I hear you...everyone thinks I'm strong but I'm really not...me too. I hide it well, but damn I'm scared. I am newly diagnosed (stage 4 with 7 micro liver mets) and working thru the emotions. I too have stomach pain, daily. and trying to find a comfortable position is a challenge - but at least I'm living. And I'm thankful for that. I have great motivation and support from many. I love living life, and prefer to laugh instead of cry. But every time I do cry, I remind myself that I am not giving into the cancer. You are in my thoughts and prayers. Good juju to you, my friend.

    Love,
    Shauna
  • dmj101
    dmj101 Member Posts: 527 Member

    Feet and poo!
    I keep a pair of very warm and soft booties in my purse and I have two pair at work! As for my shoes, I wear for comfort pretty no.. Barly comfortable yes. I'm lucky to have a great boss, he never knows when he's going to find me with my shoes off and my booties on with them propped up on my desk! :) I've come to the conclusion I can live (operative word being live) this and if by chance I wake up one morning and it's gone...I won't miss it! :)

    Before CC, the thought of talking about my poo and poo habits was far from my mind, now it is seems perfectly normal, which should probably feel very weird, but oh well. Luckily I work with some great folks!

    Ludkygirl and Joey
    HI,

    I have the neuropathy but I can't say cramping.. I don't consider the neuropathy painfull just really discomforting.
    I tried the neurontin and I couldn't work on it,, it made me feel loopy for almost 12 hrs on just one dose and it was the lowest the dr said,, and then she said if that didn't help neither would any of the other as that is the effect they all produce ,. so I gave up.

    My chemo ended in Nov 2011 and now I am on Xeloda for found mets in lungs,. boo..

    I agree the name of the drug is interesting,,

    I agree humor is needed to get through all of this..

    Try to smile and laugh as often as you can..

    Donna