Questions about Neuropathy
I have been searching on the web for answears if I will ever get better from the neuropathy but I don´t find much from cured people. My chemo was 8 times Oxi and Xeloda pills, this took 6 months. After my chemo finished in May, I have been getting worse and now I have anxiety over this, if I will be like this forever. I have pain and numbness and burn/freeze in my fingers and toes and under my feets and in my face.
Is there something that I can do to get better? Is there anyone here that have been like me and got cured?
I will meet a neuro-doctor next week, what should I ask him?
I take strong B vitamin and fish oil every day and I eat very healthy food, never any junk food.
Take care and thank you,
Matta
Comments
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Matta,
Neuropathy has come up here often, but it does seem yours is worse than most. (mine is now limited to my feet, and a bit in my fingertips)
Neurontin is used by some here (I believe that this use of it is "off label"), and there are a number of supplements that may or may not have helped.
It is hard to be definitive, as most will get better within a year, even if they do nothing. However, a significant percentage will have permanent nerve damage.
Have you discussed this with your Oncologist? He may have some other suggestions, and can be a resource for your neurologist.
You mention anxiety. My neuropathy is worst at night, and sometimes prevents me from sleeping. I have found that a Valium or a Xanax reduces the tingling, and helps me sleep. You may want to discuss one of these options with your doctor.0 -
Hi
I agree with Buck there, I have it in my feet pretty bad and it too has seemed to have gotten a bit worse since I stopped treatment 2 yrs ago. I havent found any meds that have worked yet, though some have tried Lyrica and been somewhat successful, but please talk to your doctor. I did have my GP write me a note so I could wear tennis shoes to work, went out and paid for some really nice ones, and honestly it has helpped, on days I have to wear work shoes, I can definately tell the difference, sometimes it keeps me up they hurt so bad, or tingle, just drives me crazy and for me its a short drive..
HUGS
Beth0 -
great news mine is much improved
dear matta,
search our archives, most discussed recurring subject.
congrats on being healthy.
i tried ala, glutamine, samE, mitolift and others, juicing, diet, walking.
i noticed my balance is shot still, i cannot stand at yoga classes on one foot.
so just read what we all discussed before. that will takes a few days, but you will learn heaps.
have hope, try what docs recommend, i saw a naturopath who gave advice re supplements. you need advice specific to you. i would not do heavy supplements without effective guidance.
don't under estimate reflexology and walking, i suspect getting blood flowing is the key. maybe even typing with all our fingertips helps.
hugs,
pete
your invited to visit the walking post0 -
ALA helped me tons
Alpha Lipoic Acid, which I started over a year out from chemo. 600mg twice a day.
My integrative med dr also recommended Magnesium Citrate (400 mg/day) and Glutamine.
My primary care physician was going to put me on Lyrica, but the other stuff helped me enough that I didn't need it.
Oh, yes, and high doses of B6.0 -
Hi Matta, my neuropathy has
Hi Matta, my neuropathy has improved since my last chemo in May. I had a lot of numbness and tingling in my hands and feet. When I bent my neck to look down it sent a sharp pain to my toes. It's been three months and I have gone from the feeling of an electrical jolt coming out of my feet to the improvement of some numbness. My hands are fine now and so is my back and neck. Like Beth mentioned, I take Lyrica 3 times a day. I also take Ambien to sleep at night, but I am now either taking half the dose or some nights trying to go without and I seem to do ok! Yay!...but another thing I did was look up chemo neuropathy on the internet and began taking many many vitamins and supplements. So I don't know what helped, although I really think something did since I had a fast improvement. My onc knew everything I was taking and gave me the go ahead and it is a lot of things I take.
plh,gail0 -
Thank you ......plh4gail said:Hi Matta, my neuropathy has
Hi Matta, my neuropathy has improved since my last chemo in May. I had a lot of numbness and tingling in my hands and feet. When I bent my neck to look down it sent a sharp pain to my toes. It's been three months and I have gone from the feeling of an electrical jolt coming out of my feet to the improvement of some numbness. My hands are fine now and so is my back and neck. Like Beth mentioned, I take Lyrica 3 times a day. I also take Ambien to sleep at night, but I am now either taking half the dose or some nights trying to go without and I seem to do ok! Yay!...but another thing I did was look up chemo neuropathy on the internet and began taking many many vitamins and supplements. So I don't know what helped, although I really think something did since I had a fast improvement. My onc knew everything I was taking and gave me the go ahead and it is a lot of things I take.
plh,gail
Thank you all for your good answers.
I also take sleeping pill, I could not do this if I had to wake up all nights.
I still have this electrical jolt coming out of my feet and when I bend my neck to look down .... I hope that time will set me free from this!
Matta0 -
Matta
Hi there,
Neuropathy seems to be different in us all. 4 months after finishing Oxi the feelings in my fingers became normal, 10 months later(which means last month)finally the feeling is normal once again in my feet. I had asked the onc about it, and he said the nerves in the feet were further away so it would take longer and he was right.
I eat junk food and sugar and drink colas, every once in awhile I'll shock my body with a salad of sorts, took no supplements.
Winter Marie0 -
Hi! I haven't been on theMatta said:Thank you ......
Thank you all for your good answers.
I also take sleeping pill, I could not do this if I had to wake up all nights.
I still have this electrical jolt coming out of my feet and when I bend my neck to look down .... I hope that time will set me free from this!
Matta
Hi! I haven't been on the site for a long time. There is a B vitamin that helped me during and after chemo, but I cannot remember if it is B6 or B1. Maybe others will chime in. During chemo (FOLFOX) it really helped. My neuropathy comes and goes ... and then comes back. i have noticed that a lot of sugar makes it much worse. If I eat sweets at bedtime, I have a hard time sleeping - my feet are on fire. I think if you check into diabetes sites or google diabetes you might find some help. It is a big side effect and there is much discussion there. Hope this helps, Maura
0 -
Winter Marieherdizziness said:Matta
Hi there,
Neuropathy seems to be different in us all. 4 months after finishing Oxi the feelings in my fingers became normal, 10 months later(which means last month)finally the feeling is normal once again in my feet. I had asked the onc about it, and he said the nerves in the feet were further away so it would take longer and he was right.
I eat junk food and sugar and drink colas, every once in awhile I'll shock my body with a salad of sorts, took no supplements.
Winter Marie
Winter Marie, I could kiss you for telling me this!!! Thank you so much for giving me hope!
Maura, thank you also.
I almost never eat suger any more, no candy and never any colas but once in a while I eat bread and I can feel that it does not make me good.
♥
Matta0 -
Just keep positiveMatta said:Winter Marie
Winter Marie, I could kiss you for telling me this!!! Thank you so much for giving me hope!
Maura, thank you also.
I almost never eat suger any more, no candy and never any colas but once in a while I eat bread and I can feel that it does not make me good.
♥
Matta
Matta,
I finished chemo in February of 2010. I still have neuropathy, but it has gotten better. I tried the Alpha Lapoic Acid and it din't seem to help. My Onc. also prescribe Nortriptyline to help. It did help me sleep but that was all. For me the neuropathy comes and goes in my finger tips now so that is much better. But my feet have not gotten any better in the last year. Like Buck, I also seem to suffer more at night from it and when I have had a long and strenuous day at work. Some days I change my work shoes twice to get enough relief to make it a full day at work on my feet. I have also read that Glutem may have some relation to neuropathy,but I honestly don't know for sure.
Don0 -
Great discussioncoolvdub said:Just keep positive
Matta,
I finished chemo in February of 2010. I still have neuropathy, but it has gotten better. I tried the Alpha Lapoic Acid and it din't seem to help. My Onc. also prescribe Nortriptyline to help. It did help me sleep but that was all. For me the neuropathy comes and goes in my finger tips now so that is much better. But my feet have not gotten any better in the last year. Like Buck, I also seem to suffer more at night from it and when I have had a long and strenuous day at work. Some days I change my work shoes twice to get enough relief to make it a full day at work on my feet. I have also read that Glutem may have some relation to neuropathy,but I honestly don't know for sure.
Don
Matta,
Thanks for starting this discussion...I finished my chemo last Wednesday. My neuropathy is as bad as yours it seems. My toes are numb and there feels like a rolled up sock runs the length of the bottom of my foot. Funny...I just noticed this weekend that when I look down a pulse of tingle goes to my feet. To the rest on this board, is that a good sign? Are the nerves reacting? My Onco prescribed Neurontin a couple weeks ago but I had not started it. He said it was for pain, but I don't really have pain, just numbness. Now though it gets painful after a full day. Coolvdub, I think I'll try the shoe changing. I wear my regular dress shoes to work all day and my feet are killing me by mid afternoon.
Matta, hang in there, I think we will make it through
Mike0 -
Hey Mikespringmike2010 said:Great discussion
Matta,
Thanks for starting this discussion...I finished my chemo last Wednesday. My neuropathy is as bad as yours it seems. My toes are numb and there feels like a rolled up sock runs the length of the bottom of my foot. Funny...I just noticed this weekend that when I look down a pulse of tingle goes to my feet. To the rest on this board, is that a good sign? Are the nerves reacting? My Onco prescribed Neurontin a couple weeks ago but I had not started it. He said it was for pain, but I don't really have pain, just numbness. Now though it gets painful after a full day. Coolvdub, I think I'll try the shoe changing. I wear my regular dress shoes to work all day and my feet are killing me by mid afternoon.
Matta, hang in there, I think we will make it through
Mike
I took to wearing just sandals, I know not everyone can do that all day, but it really made my toes feel better not being balled up in those socks and the feeling I had been suffering, I had gotten so I hated the feeling of socks (felt like I was walking kind of on gravel) and so I started wearing the sandals and it felt so much better.
Although I can wear socks and shoes now, I kind of have stuck to my sandals as even the memory of that feeling still bothers me. Funny that.
Winter Marie0 -
hey winterherdizziness said:Hey Mike
I took to wearing just sandals, I know not everyone can do that all day, but it really made my toes feel better not being balled up in those socks and the feeling I had been suffering, I had gotten so I hated the feeling of socks (felt like I was walking kind of on gravel) and so I started wearing the sandals and it felt so much better.
Although I can wear socks and shoes now, I kind of have stuck to my sandals as even the memory of that feeling still bothers me. Funny that.
Winter Marie
Dear Winter,
At least we got some treatment things in common.
I also got a pair of sandals in fiji, the type which stimulate blood flow to your feet, they are uncomfortable , but I figure worth it. Its way to cold to where sandals in winter in sydney.
hugs,
pete0 -
Numb hands and feet
I finished Folfox in April and found the nueropathy felt like it got worse before it started to get better. No feeling in my feet, numbness and tingling in the fingers and burning feet all night. I suffered a fall and turned ankle when walking on uneven ground when I had no feelings in my feet. I too experienced the feeling of walking on gravel on my feet. I am now 3 months plus post chemo and yes I still feel the burning at night that prevents sleeping sometimes when I have been on my feet all day wearing shoes and socks. I found that Teva Sandals with smart wool socks in the morning are wonderful. The socks must be loose over the toes. As the temperature warms up I remove the socks and leave the feet free in the Teva Sandals. I talked to my Oncologist and asked what I could do for neuropathy and he said "nothing". I found on this board that time to heal is the answer. When the weather is nice and hot my feet and hands feel better.
I concur that sandals with good support and no "bunching socks" seem to help the most.
I found online it can take as long as two years to heal so I am still hopeful. Each day it feels better makes me feel more hopeful.
NB0 -
Neuropathyrelaxoutdoors08 said:Numb hands and feet
I finished Folfox in April and found the nueropathy felt like it got worse before it started to get better. No feeling in my feet, numbness and tingling in the fingers and burning feet all night. I suffered a fall and turned ankle when walking on uneven ground when I had no feelings in my feet. I too experienced the feeling of walking on gravel on my feet. I am now 3 months plus post chemo and yes I still feel the burning at night that prevents sleeping sometimes when I have been on my feet all day wearing shoes and socks. I found that Teva Sandals with smart wool socks in the morning are wonderful. The socks must be loose over the toes. As the temperature warms up I remove the socks and leave the feet free in the Teva Sandals. I talked to my Oncologist and asked what I could do for neuropathy and he said "nothing". I found on this board that time to heal is the answer. When the weather is nice and hot my feet and hands feel better.
I concur that sandals with good support and no "bunching socks" seem to help the most.
I found online it can take as long as two years to heal so I am still hopeful. Each day it feels better makes me feel more hopeful.
NB
I´m still searching for more answers and found this :
Neuropathy - Prevention & Curing Protocol
Maybe something in this that we could try .. :-)
♥
Matta0 -
LOLMatta said:Neuropathy
I´m still searching for more answers and found this :
Neuropathy - Prevention & Curing Protocol
Maybe something in this that we could try .. :-)
♥
Matta
I stay away from anything that suggests bowel cleansing (with the exception that it is necessary for a colonoscopy). I absolutely detest the proponents of bowel cleansing via enemas, etc.,(by this I mean the shysters that make money off people doing this, NOT the people that are taken in and fooled by them)as there is no proof what-so-ever that it helps in anyway. Please read http://www.mdanderson.org/publications/focused-on-health/issues/2010-march/clean-your-colon-colon-health-cleanse.html
for a better take on it.
Winter Marie0 -
;-)herdizziness said:LOL
I stay away from anything that suggests bowel cleansing (with the exception that it is necessary for a colonoscopy). I absolutely detest the proponents of bowel cleansing via enemas, etc.,(by this I mean the shysters that make money off people doing this, NOT the people that are taken in and fooled by them)as there is no proof what-so-ever that it helps in anyway. Please read http://www.mdanderson.org/publications/focused-on-health/issues/2010-march/clean-your-colon-colon-health-cleanse.html
for a better take on it.
Winter Marie
Thank you for this article about; Clean Your Colon Health or Hype? ... I read everything in my search but maybe I should rest my case now and try to calm down ... :-D
♥
Matta0 -
NeuropathyMatta said:;-)
Thank you for this article about; Clean Your Colon Health or Hype? ... I read everything in my search but maybe I should rest my case now and try to calm down ... :-D
♥
Matta
Hi: Yup, a topic posted more often than any other! Like Pete, I take supplements for oxaliplatin-related neuropathy (Vit B6, alpha liloic acid, L-Glutamine - fermented, 5 grams/day powder in juice), Calcium/Magnesium. As well the oncologist reduced the amount and infusion rate of the oxaliplatin. I haven't had many problems with neuropathy since the first treatment (I just finished treatment 7). But I wear heavy duty orthotics and they are bothering one of my feet where the skin is still sensitive so I have gone to good-support sandals.
Good luck!
Cheryl0 -
I finally got an answer on neuropathy in feet and legs
I was wondering why I can barely walk apart from the psoriatic arthritis. My mri report. Grade2 spondylosthesis at l5-s1 with bilateral pars fractures,with L5 vertebral body being anteriorly subluxed 14mm on s1. These changes have resulted uncovering of the posterior vertebrel disc and marked narrowing of the left intervertebrel foramen with compression of the exiting L5 nerve root. There is less compression on the right intervertebrel foramen at this level with impingement on the right L5 nerve root.
At L2-L3 there is a small focal central disc protrusion which does not extend to the adjacent intervertebrel formina or cause significant compression of the spinal cord.
Advanced degenerative changes demonstrated involving the facet joints throughout the lumbosacaral spine.
It appears these nerves have connections to the sciatic nerves which run down both legs,thus the neuropathy.
My rheumatologist has no real answers,his advice,try dry needling. I will and if it doesn't work ,who knows. Ron0 -
While what follows is still in trial phase, FDA is fast trackingron50 said:I finally got an answer on neuropathy in feet and legs
I was wondering why I can barely walk apart from the psoriatic arthritis. My mri report. Grade2 spondylosthesis at l5-s1 with bilateral pars fractures,with L5 vertebral body being anteriorly subluxed 14mm on s1. These changes have resulted uncovering of the posterior vertebrel disc and marked narrowing of the left intervertebrel foramen with compression of the exiting L5 nerve root. There is less compression on the right intervertebrel foramen at this level with impingement on the right L5 nerve root.
At L2-L3 there is a small focal central disc protrusion which does not extend to the adjacent intervertebrel formina or cause significant compression of the spinal cord.
Advanced degenerative changes demonstrated involving the facet joints throughout the lumbosacaral spine.
It appears these nerves have connections to the sciatic nerves which run down both legs,thus the neuropathy.
My rheumatologist has no real answers,his advice,try dry needling. I will and if it doesn't work ,who knows. Ron
something now called KRN5500, "for the treatment of chemotheraphy-induced-neuropathic pain in patients with cancer"........at
newswise.com/articles/view/579747/?sc=dwhn0
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