Neuropathy and pain in the feet

JanJan63

I have been dealing with neuropathy in my feet for a year and a half now. Most of the time it's just annoying like they've gone to sleep or they're wrapped in something or have something stuck to the bottoms or like I'm walking on bubble wrap. But sometimes, particularly after I've done some physical work, they just hurt like hell. The weight of my sheet and blanket hurts, they hurt if I turn them too quickly or change positions, they hurt like I've been in a torture device and it's over but my feet still hurt from it. When they get like this I can hardly sleep at night because of the discomfort. I also get foot cramps which I've never had in my life.

Is this common for neuropathy? Or is this unusual? The neuropathy I have around my chest and other odd spots is going away. The thing is that I don't know if it's from the chemo or from the paralysis I had after the blood clot because the chemo ended as soon as I had the blood clot.

Jan

SilentRenegade

My dad has had it in his

My dad has had it in his hands and feet since he first had chemo 2.5 years ago. It's much better when it's warm out (like over 65-70), but horrible if it's cold (think under 50). His feet are the worst, sometimes he can't really feel them, and usually wears a pair of thick socks that have support in them and slippers. If his feet are warm, it's tolerable, but he used to complain a lot more. He doesn't know if it's better or he has just gotten used to it. In the summer, he can sometimes go without socks or slippers. I haven't heard him complain of the bedsheets, but he did complain about moving around a lot when it first started. 

JanJan63

SilentRenegade said:

My dad has had it in his

My dad has had it in his hands and feet since he first had chemo 2.5 years ago. It's much better when it's warm out (like over 65-70), but horrible if it's cold (think under 50). His feet are the worst, sometimes he can't really feel them, and usually wears a pair of thick socks that have support in them and slippers. If his feet are warm, it's tolerable, but he used to complain a lot more. He doesn't know if it's better or he has just gotten used to it. In the summer, he can sometimes go without socks or slippers. I haven't heard him complain of the bedsheets, but he did complain about moving around a lot when it first started. 

Interesting. In the winter I

Interesting. In the winter I was using a heating pad every night. I'm not sure if it made them feel better or just gave the nerves something else to focus on but it certainly seemed to help. This pain is what's really bothering me now. Sometimes I can barely walk. It's worse after I've been off of them, for some reason.

Jan

vtspa6

Jen that is exactly what Tim

Jen that is exactly what Tim's symptoms are.  He says when he is real still he has no symptoms, but as soon as he moves just a little thats it. He hates it when he puts socks on.  Hard for him to walk, hold onto anything & he can't taste food. He has it in his feet, hands/fingers, mouth & tongue.  Out of all the side effects from chemo, this is the worst.  He went to see a neurologist & she told him there is no magic cure for nerve damage, it just takes time to heal.  He just started taking Lyrica, will let you know if it helps him.

ron50

Hi Jan,

   I did not get neuropathy straight away from chemo. I had none of the platinum drugs associated with neuropathy. However I did find a site that had quite a bit of information on chemo toxcicity and it made the claim that there was often delayed neurotoxcicity when 5 flourouricil was used in conjunction with levamisole. My neuropathy commenced when I started walking regularly a few years after chemo. The onset was gradual but the results were extreme. I was tested by a neurologist with nerve conductivity tests . He found modreate to severe motor sensory peripheral neuropathy of both feet and both legs up to and just beyond the knees. I have a similar problem with my left hand. He offered no cause and no treatment. My then rheumatologist tried treating it with lyrica, neurontin, endep ,norspan and fentanyl patches . None of these drugs made any improvement. I was on methotrexate for some years and found that it caused major flares in the neuropathy . Sometimes at night I swore my legs were catching on fire and it is now impossible for me to go barefoot as grains of sand feel like boulders. Targin was of some value against the pain but I was at a dose of 40mg oxycode//20 mg naloxone twice a day. The dose stopped working, I either became used to it or suffered hypoalgesia. Whatever, I had to go off it(34 weeks of gradual withdrawel) and the pain from the neuropathy has returned with interest.  I have not been able to find anything to alleviate the pain. I try to ignore the pain by keeping busy. I still work but it is getting harder and harder to make it thru each year. I am 66 and I feel like 90. I feel for everyone that has to deal with any level of neuropathy. Hugs ron.

JanJan63

ron50 said:

Hi Jan,

   I did not get neuropathy straight away from chemo. I had none of the platinum drugs associated with neuropathy. However I did find a site that had quite a bit of information on chemo toxcicity and it made the claim that there was often delayed neurotoxcicity when 5 flourouricil was used in conjunction with levamisole. My neuropathy commenced when I started walking regularly a few years after chemo. The onset was gradual but the results were extreme. I was tested by a neurologist with nerve conductivity tests . He found modreate to severe motor sensory peripheral neuropathy of both feet and both legs up to and just beyond the knees. I have a similar problem with my left hand. He offered no cause and no treatment. My then rheumatologist tried treating it with lyrica, neurontin, endep ,norspan and fentanyl patches . None of these drugs made any improvement. I was on methotrexate for some years and found that it caused major flares in the neuropathy . Sometimes at night I swore my legs were catching on fire and it is now impossible for me to go barefoot as grains of sand feel like boulders. Targin was of some value against the pain but I was at a dose of 40mg oxycode//20 mg naloxone twice a day. The dose stopped working, I either became used to it or suffered hypoalgesia. Whatever, I had to go off it(34 weeks of gradual withdrawel) and the pain from the neuropathy has returned with interest.  I have not been able to find anything to alleviate the pain. I try to ignore the pain by keeping busy. I still work but it is getting harder and harder to make it thru each year. I am 66 and I feel like 90. I feel for everyone that has to deal with any level of neuropathy. Hugs ron.

Aw thanks Ron. Mine is not

Aw thanks Ron. Mine is not that bad, I feel terrible you're dealing with that. And mine is pretty low level as long as I don't do too much. But I don't want to sit around doing nothing, I want to be active and that's when it gets bad. Very frustrating. Painkillers don't seem to do anything and I have to be careful because of being on blood thinners, I can't take certain painkillers. Pretty much just Tylenol and it's not very effective. I just don't understand why being active makes this worse. The best way I can describe the pain is when I was well and if I jumped off of something too high and got that terrible pain for a few seconds right after landing. This is the same but lasts for days.

Jan

NewHere

Just Weird Feeling

More than pain in my feet at this point.  I feel not quite like my feet are asleep if I have nothing on my feet.  So now I pretty much have a pair of socks on all the time, which is something I never did.  I work birks almost all the time.  My hands are improving more than my feet.  Or maybe just getting used to it.

SilentRenegade

vtspa6 said:

Jen that is exactly what Tim

Jen that is exactly what Tim's symptoms are.  He says when he is real still he has no symptoms, but as soon as he moves just a little thats it. He hates it when he puts socks on.  Hard for him to walk, hold onto anything & he can't taste food. He has it in his feet, hands/fingers, mouth & tongue.  Out of all the side effects from chemo, this is the worst.  He went to see a neurologist & she told him there is no magic cure for nerve damage, it just takes time to heal.  He just started taking Lyrica, will let you know if it helps him.

This is really interesting...

This is really interesting... I didn't know you could get it in your mouth... My dad complains that food tastes weird, and he's been off the chemo that caused it for 2 years. 

Trubrit

About as good as its going to get

My hands got better gradually, but I've been left with less strenght in my hands. 

My feet were bad for over two years, but have imporved this past year. I think they aren't going to get any better now. 

I am lucky though, as they are just numbish, and I have no pain.  

SUE

beaumontdave

I've had neuropathy most of

I've had neuropathy most of my adult life, from the CMT disease. It got worse for the year and a half after chemo, and it progresses with age, of course, but I'm used to most of it. I fooled around with the opiate drugs they prescribed Cindy and I, and I don't want to do that again. Tried Neurontin, Lyrica, other stuff, but Tramadol seems to help most. Doing physical work means my hobbies involve getting off my feet as much as advisable, and I have always loved hiking [Life does have a mean streak to it.] I like my feet cold, and blankets weigh them down, so I sleep with the corner of the sheet/blanket over my waist, and make adjustments through out the night. If the pills and changes don't help I have an electric massaging thing, with the round knobs on it, that I can set at my knees and vibrate the nerves in my legs and feet until everything is kind of numb......................Dave

MS2014

Vitamin E suplements

Hi,

I've been advised to have vitamin E supplements to figth neuropathy. I tried to contrast it with the web and found interesting facts

Neuroprotective Effect of Vitamin E Supplementation in Patients Treated With Cisplatin Chemotherapy 

https://www.google.fr/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwjA_pPxrvDMAhUTsBQKHb29A6kQFgggMAA&url=http://www.ncbi.nlm.nih.gov/pubmed/12610195&usg=AFQjCNEmBJaq5yWULJ7VRlPV0DYpG0WKtg

It is for cisplatin when oxyplatin is the chemo used for colon cancer , but the thing it seems there is a technical base

Anyhow, the best thing is to ask our doctors

Today I asked our doctor and she considered it could be an option but as my mother is not felling strong neuropathy simpthons it was not urgent to have the supplement(¿?)

I'll ask again

 

Hope this helps

JanJan63

Thanks for the suggestion! I

Thanks for the suggestion! I'm already on Vitamin D and vitamin B12 so I could add that to the roster.

Jan

MS2014

JanJan63 said:

Thanks for the suggestion! I

Thanks for the suggestion! I'm already on Vitamin D and vitamin B12 so I could add that to the roster.

Jan

Hope it works for you Jan

Anyhow ask your doctor. If it helps, before knowing that vitamin E was good for neuropathy my mother started from teh first round of foxfoix with beer yeast (I don know if this is the name in English, (pls confirmme if you understand) plus A+E vitamisns

Our doctor said it was good for the skin problemds due chemo. The thing is that after 12 + 7 rounds of folfox, neuropathy has never been a big issue for her. I dont know if beer yeast + A+E vitamins has something to do with that

Lest keep crossed fingers for her

Hope all this info helps you and some other friends

Phil64

Sounds familiar

Jan, I have had a similar experience. My hands are fine. My feet have. Been numb for years. Mos the numbness is just annoying. However once in a while I get pain. Mostly in my toes. A throbbing pain that will wake me up if I'm sleeping and keep me from sleeping. Usually I'll take a couple Tylenol when that happens and eventually the Tylonol kicks in and I'm able to sleep. Not until after I lose a few hours of sleep first. 

henkie

SilentRenegade said:

This is really interesting...

This is really interesting... I didn't know you could get it in your mouth... My dad complains that food tastes weird, and he's been off the chemo that caused it for 2 years. 

Hi all

Hi all

Only after two sessions of chemo (Stage iv,colon) i have the neuropathy in my tounge and lips. Sometimes it will feel like they are cramping up. I will have to see what the 10 next sessions will bring to the table.

Trubrit

henkie said:

Hi all

Hi all

Only after two sessions of chemo (Stage iv,colon) i have the neuropathy in my tounge and lips. Sometimes it will feel like they are cramping up. I will have to see what the 10 next sessions will bring to the table.

Talk with your Oncologist for sure

Make sure you talk about this with your Oncologist.

Are you eating and drinking cold foods and liquids? I found that anything cold would cause a numbing sensation in my mouth and my lips. I even drank my wter warm during chemo. 

Good luck. 

SUE

Eryan330

I know how you feel

Hi Jan,

   Ive been dealing with neuropathy in my hands and feet since June 2015. Either they feel like there on fire, or pins and needles or just completely numb.  It tends to get worse at night when I lie down.  My surgeon prescribed 75mg Amitriptyline for me to take at bedtime. It was originally an anti-depressant pill which sucked at being able to help with depression but it was later learned that it works great for neuropathy. I've been taking it for 4 months now and NO neuropathy in my hands or feet.  It does take 3-4 doses before you begin to feel the effects of the drug.  I don't know what the long term effects of the pill are but I'm so happy I don't have to deal with painful hands and feet that I don't really care.  If you have any questions I'll do my best to answer them. God bless

JanJan63

Eryan330 said:

I know how you feel

Hi Jan,

   Ive been dealing with neuropathy in my hands and feet since June 2015. Either they feel like there on fire, or pins and needles or just completely numb.  It tends to get worse at night when I lie down.  My surgeon prescribed 75mg Amitriptyline for me to take at bedtime. It was originally an anti-depressant pill which sucked at being able to help with depression but it was later learned that it works great for neuropathy. I've been taking it for 4 months now and NO neuropathy in my hands or feet.  It does take 3-4 doses before you begin to feel the effects of the drug.  I don't know what the long term effects of the pill are but I'm so happy I don't have to deal with painful hands and feet that I don't really care.  If you have any questions I'll do my best to answer them. God bless

Thanks for the suggestion. I

Thanks for the suggestion. I have to say that over time it is getting less and less. I figure in another few years it might be gone. And I've gotten used to it for the most part. What would it feel like to feel normal again? I don't even remember. Maybe that's for the best.

Jan