Peripheral Neuropathy ******
I also wanted to share with you my new screen picture - it's of me and my new grandson about 2 months ago. This picture has more meaning than I can explain - so special
:)Love to you all, Kelly
Comments
-
:-)
Hi Kelly, first off let me tell you how wonderful you photo is, very touching! In regards to the neuropathy I had a lot of trouble in one of my hands and fingers. My doctor sent me to a neurologist who ran tests and confirmed it was in fact nerve damage. She informed me that the healing process is slow. I was given neuronton which only helped a tad and Paxil (anit depresant) which is the only thing that helped. I also wear a gauntlet to help with the pain. It will ease up, but it takes time.
RE0 -
Here is a very good link for
Here is a very good link for you from ACS and the info below is from the same site:
What Happens if I Get CIPN (Chemo Induced Peripheral Neuropathy)?
"Can CIPN (Chemotherapy Induced Peripheral Neuropathy) be treated?
The goal of treatment is to ease the symptoms of CIPN. Sometimes the symptoms of CIPN are short-term. They go away over time after treatment is done. In other cases, it can take years for the symptoms to totally go away. But sometimes they last much longer and need long-term treatment. Severe CIPN may never go away.
Treatment is mostly given to relieve the pain that can come with CIPN. Some of the drugs used include the following:
•Steroids, only for a short time until a long-term treatment plan is in place
•Patches or creams of numbing medicine that can be put right on the painful area (for example, lidocaine patches or capsaicin cream)
•Anti-depressant medicines, often in smaller doses than are used to treat depression
•Anti-convulsant medicines, which are used to help many types of nerve pain
•Opioids or narcotics, for when pain is severe
Researchers are looking at which drugs work best to relieve this kind of pain. It may take more than one try to find out what works best for you.
Other treatments that can be tried to ease neuropathic pain (pain that comes from nerves) and their effects on your life:
•Electrical nerve stimulation
•Occupational therapy
•Physical therapy
•Relaxation therapy
•Guided imagery
•Distraction
•Acupuncture
•Biofeedback
Physical therapy and occupational therapy may be able to make you stronger. They may also to help you find ways to do things that you are not able to do because of CIPN.
What can I do to deal with CIPN?
There are some things you can do to better deal with the symptoms of neuropathy, such as
•Use your pain medicines if you have them. Most pain medicines work best if they are taken before the pain gets bad.
•Avoid the things that seem to make your CIPN worse, such as hot or cold temperatures, or snug clothes or shoes.
•Give yourself extra time to do things. Ask friends for help with tasks you find hard to do.
•Don't drink alcohol. It can cause nerve damage on its own, and may make CIPN worse.
•If you have diabetes, control your blood sugar. High blood sugar levels can damage nerves.
•If you have neuropathy in your hands, use knives, scissors, box cutters, and other sharp objects gently and carefully. Use them only when you can give your full attention to your task.
•Protect your hands by wearing gloves when you clean, work outdoors, or do repairs.
•If the neuropathy is in your feet, sit down as much as possible, even while brushing your teeth or cooking.
•Take care of your feet. Look at them once a day to see if you have any injuries or open sores. Always wear shoes that cover your whole foot when walking, even at home. Talk to your doctor about shoes or special inserts that may help protect your feet.
•Be sure that you have ways to support yourself if you have problems with stumbling and walking. Hand rails in hallways and bathrooms may help you keep your balance. A walker or cane may give you extra support.
•Use night lights or flashlights when getting up in the dark.
•Protect yourself from heat injuries. Set hot water heaters between 105° to 120°F to reduce scalding risk while hand washing. Use oven gloves and hot pads when handling hot dishes, racks, or pans. Use a thermometer to check bath water.
•Talk to your doctor or nurse about the problems you are having in daily life. They might be able to suggest ways to make you feel better or function better.
•If your neuropathy is permanent, ask your doctor to refer you to an occupational therapist (OT). They are experts who help people lead more normal lives despite physical limits. OTs can visit your home to help you with safety and mobility (walking or getting around in your home and community)."0 -
Thank you so much for your reply....RE said::-)
Hi Kelly, first off let me tell you how wonderful you photo is, very touching! In regards to the neuropathy I had a lot of trouble in one of my hands and fingers. My doctor sent me to a neurologist who ran tests and confirmed it was in fact nerve damage. She informed me that the healing process is slow. I was given neuronton which only helped a tad and Paxil (anit depresant) which is the only thing that helped. I also wear a gauntlet to help with the pain. It will ease up, but it takes time.
RE
I looked up Paxil and thats for depression hummmm, wonder how that could helped with the neuropathy ??? Where did you get your gauntlet at? Yea, I read that it takes about 3-5 months. When did yours ease up?? I hope mine eases up soon. 0 -
Kelly .. Congradulations on your new grandbaby .. whatJean 0609 said:Hi Kelly,
Sorry can't help you with your pain.
I was just thinking about you the other day. Love the picture of you and your new grandson. I have some pictures of my granddaughter from Christmas, but haven't gotten my butt around to posting them.
xoxo,
Jean
a precious gift! Wow .. and what terrific information provided by our resident -- Information Queen -- Miss C.C.!
So proud to be part of this elite group of WARRIORS.
Strength and Courage to all,
Vicki Sam0 -
It does take time..
Not what you need to hear, I know...I am 14 monhs out from surgery,chemo and radiation...I had neuropathy in the back of my neck..ouch! I had Taxotere/Cytoxan....I had numbness and discomfort in the area..Didn't want to take any more medications...sick of them..I used ice at times when it was really uncomfortable...but the best relief came from 4, 200 mg of Advil... 800 mg total). Slowly but surely it has disappeared. Don't know if this would be of any help to you...best to check with your doctor...
Wishing you pain ffree days...
Nancy0 -
I have neuropathy in handsMAJW said:It does take time..
Not what you need to hear, I know...I am 14 monhs out from surgery,chemo and radiation...I had neuropathy in the back of my neck..ouch! I had Taxotere/Cytoxan....I had numbness and discomfort in the area..Didn't want to take any more medications...sick of them..I used ice at times when it was really uncomfortable...but the best relief came from 4, 200 mg of Advil... 800 mg total). Slowly but surely it has disappeared. Don't know if this would be of any help to you...best to check with your doctor...
Wishing you pain ffree days...
Nancy
I have neuropathy in hands and feet. I had it in my eyes but that resolved quickly. MY hands a way better, the pain was tough in the beginning, but I wouldnt say its painful now, more the numbness is annoying. I also am more clumsy when my hands are swollen. to use chen's description, I used to stumble like a drunken sailor, it got pretty extreme and painful. I almost didnt finish my last taxol treatment. but chose to just do it. I was in PT for a while. I find I compensate by looking at my feet, because I cant count on them to feel the terrain. however it has gotten better, its not resolved. but if I had to deal with this as the best it can be I would have to accept it. I do take B vitamins, tried neurontin but I didnt tolerate it. Some people use glutamine, some use lyrica. I have read people here do not take hot baths. some put there hands and feet in ice during chemo. My neurogist said some people use capsasin, i believe. Not sure if you have seen a neurologist but perhaps this would help. Just what you want one more doc! Its really hard to explain how your hands could be numb and painful at the same time, but thats neuropathy.0 -
Thank youCypressCynthia said:Here is a very good link for
Here is a very good link for you from ACS and the info below is from the same site:
What Happens if I Get CIPN (Chemo Induced Peripheral Neuropathy)?
"Can CIPN (Chemotherapy Induced Peripheral Neuropathy) be treated?
The goal of treatment is to ease the symptoms of CIPN. Sometimes the symptoms of CIPN are short-term. They go away over time after treatment is done. In other cases, it can take years for the symptoms to totally go away. But sometimes they last much longer and need long-term treatment. Severe CIPN may never go away.
Treatment is mostly given to relieve the pain that can come with CIPN. Some of the drugs used include the following:
•Steroids, only for a short time until a long-term treatment plan is in place
•Patches or creams of numbing medicine that can be put right on the painful area (for example, lidocaine patches or capsaicin cream)
•Anti-depressant medicines, often in smaller doses than are used to treat depression
•Anti-convulsant medicines, which are used to help many types of nerve pain
•Opioids or narcotics, for when pain is severe
Researchers are looking at which drugs work best to relieve this kind of pain. It may take more than one try to find out what works best for you.
Other treatments that can be tried to ease neuropathic pain (pain that comes from nerves) and their effects on your life:
•Electrical nerve stimulation
•Occupational therapy
•Physical therapy
•Relaxation therapy
•Guided imagery
•Distraction
•Acupuncture
•Biofeedback
Physical therapy and occupational therapy may be able to make you stronger. They may also to help you find ways to do things that you are not able to do because of CIPN.
What can I do to deal with CIPN?
There are some things you can do to better deal with the symptoms of neuropathy, such as
•Use your pain medicines if you have them. Most pain medicines work best if they are taken before the pain gets bad.
•Avoid the things that seem to make your CIPN worse, such as hot or cold temperatures, or snug clothes or shoes.
•Give yourself extra time to do things. Ask friends for help with tasks you find hard to do.
•Don't drink alcohol. It can cause nerve damage on its own, and may make CIPN worse.
•If you have diabetes, control your blood sugar. High blood sugar levels can damage nerves.
•If you have neuropathy in your hands, use knives, scissors, box cutters, and other sharp objects gently and carefully. Use them only when you can give your full attention to your task.
•Protect your hands by wearing gloves when you clean, work outdoors, or do repairs.
•If the neuropathy is in your feet, sit down as much as possible, even while brushing your teeth or cooking.
•Take care of your feet. Look at them once a day to see if you have any injuries or open sores. Always wear shoes that cover your whole foot when walking, even at home. Talk to your doctor about shoes or special inserts that may help protect your feet.
•Be sure that you have ways to support yourself if you have problems with stumbling and walking. Hand rails in hallways and bathrooms may help you keep your balance. A walker or cane may give you extra support.
•Use night lights or flashlights when getting up in the dark.
•Protect yourself from heat injuries. Set hot water heaters between 105° to 120°F to reduce scalding risk while hand washing. Use oven gloves and hot pads when handling hot dishes, racks, or pans. Use a thermometer to check bath water.
•Talk to your doctor or nurse about the problems you are having in daily life. They might be able to suggest ways to make you feel better or function better.
•If your neuropathy is permanent, ask your doctor to refer you to an occupational therapist (OT). They are experts who help people lead more normal lives despite physical limits. OTs can visit your home to help you with safety and mobility (walking or getting around in your home and community)."
Wonderful information - Thank you so much for posting it.0 -
Hi JeanJean 0609 said:Hi Kelly,
Sorry can't help you with your pain.
I was just thinking about you the other day. Love the picture of you and your new grandson. I have some pictures of my granddaughter from Christmas, but haven't gotten my butt around to posting them.
xoxo,
Jean
Being a grandma is definatly the best. I love every minute of it. I just want to hug and kiss him all the time. Hurry and post pictures of your granddaughter - I'd love to see them.
Kelly0 -
Hey NancyMAJW said:It does take time..
Not what you need to hear, I know...I am 14 monhs out from surgery,chemo and radiation...I had neuropathy in the back of my neck..ouch! I had Taxotere/Cytoxan....I had numbness and discomfort in the area..Didn't want to take any more medications...sick of them..I used ice at times when it was really uncomfortable...but the best relief came from 4, 200 mg of Advil... 800 mg total). Slowly but surely it has disappeared. Don't know if this would be of any help to you...best to check with your doctor...
Wishing you pain ffree days...
Nancy
I get alot of relief from putting my hands in very warm water (as warm as I can tolerate)
It seems worse at night-Hard to sleep, I can feel it slowly getting numb as I lay down. My neuropathy didn't really start until after my last treatment (Oct 1st) and got increasinly worse - I'm hoping that I am at the peak of the pain and now it will begin to dimish. I read it's a gradual process. So I try to wait patiently.
Love talking with you guys
Kelly0 -
Hi Kelly...
I have neuropathy in hands and feet. At one time, it extended up my arms, past my elbows, so just having it in my hands is good! Finished chemo in late 2008, and still can't feel very well..like to pick up small things. They hurt though. And the cold really, really makes my hands hurt.
I also sometimes have a problem feeling correctly with my feet and I trip at times.
I did not have Taxotere, but had Abraxane, and that really did a number....
I basically put up with the pain until recently, when I was put on Neurontin. I really think that it is helping...not waking at night in pain....although, it apparently helps some and not others. I think I may be one of the lucky ones that it works on. I am on a small dose and can increase it myself, up to a certain point.
My best advice is to ask your doctors for help. Nobody wants to go through that pain and they (your doctors) can probably find something to at least reduce it, if not eliminate it altogether.
Hugs,
CR0 -
Yep!carkris said:I have neuropathy in hands
I have neuropathy in hands and feet. I had it in my eyes but that resolved quickly. MY hands a way better, the pain was tough in the beginning, but I wouldnt say its painful now, more the numbness is annoying. I also am more clumsy when my hands are swollen. to use chen's description, I used to stumble like a drunken sailor, it got pretty extreme and painful. I almost didnt finish my last taxol treatment. but chose to just do it. I was in PT for a while. I find I compensate by looking at my feet, because I cant count on them to feel the terrain. however it has gotten better, its not resolved. but if I had to deal with this as the best it can be I would have to accept it. I do take B vitamins, tried neurontin but I didnt tolerate it. Some people use glutamine, some use lyrica. I have read people here do not take hot baths. some put there hands and feet in ice during chemo. My neurogist said some people use capsasin, i believe. Not sure if you have seen a neurologist but perhaps this would help. Just what you want one more doc! Its really hard to explain how your hands could be numb and painful at the same time, but thats neuropathy.
I think that's an oxymoron...lol, but yes, numb and painful at the same time! Nobody understands the feeling unless they have had it. I liken it to the numbing pain when your extremities are super cold.
CR0 -
I couldnt tolerate theCR1954 said:Hi Kelly...
I have neuropathy in hands and feet. At one time, it extended up my arms, past my elbows, so just having it in my hands is good! Finished chemo in late 2008, and still can't feel very well..like to pick up small things. They hurt though. And the cold really, really makes my hands hurt.
I also sometimes have a problem feeling correctly with my feet and I trip at times.
I did not have Taxotere, but had Abraxane, and that really did a number....
I basically put up with the pain until recently, when I was put on Neurontin. I really think that it is helping...not waking at night in pain....although, it apparently helps some and not others. I think I may be one of the lucky ones that it works on. I am on a small dose and can increase it myself, up to a certain point.
My best advice is to ask your doctors for help. Nobody wants to go through that pain and they (your doctors) can probably find something to at least reduce it, if not eliminate it altogether.
Hugs,
CR
I couldnt tolerate the neurontin enough to get it to a high enough dose to help. so I cant say if it would have helped or not. I had one of the rarer side effects, if you knew my history not a shocker. My doc also says elavil could help, I tried it for sleep but it didnt work. I also had it up to my elbows, shooting pain,I used to ask my husband to rub my hands. when I shave my legs I can feel certain areas on my calves up to my knee like a track that is numb. ankles definately. It really causes weakness. I would drop things because I'd forget I was holding them, my flip flps would fall off my feet when Iwas sitting because I couldnt feel them. On the beach I would have to look at my feet, or I would lose my balance. I was anxious in crowds because I couldnt compensate for sudden movements of others. My family was usually at my side although I did not fall thank goodness. I think it looked worse. I remember being embarrassed thinking I looked drunk. All of this is better, not so obvious. not sure how much better it will get. The point is you should ask your doc about some of these things, they may work. the neurontin really seems to help people especially with the pain. and Mama g is geting some relief from lyrica. Oh yeah I had it on my face briefly too, felt like a bug was crawling on my face. fun fun0 -
I've never had neuropathy,new2me said:Hey Nancy
I get alot of relief from putting my hands in very warm water (as warm as I can tolerate)
It seems worse at night-Hard to sleep, I can feel it slowly getting numb as I lay down. My neuropathy didn't really start until after my last treatment (Oct 1st) and got increasinly worse - I'm hoping that I am at the peak of the pain and now it will begin to dimish. I read it's a gradual process. So I try to wait patiently.
Love talking with you guys
Kelly
I've never had neuropathy, and, I am sorry for all of you that have it. Praying that something will help.
And, that is a beautiful picture of you and your grandbaby!
Hugs, Debby0 -
Oh my goodness Carkriscarkris said:I couldnt tolerate the
I couldnt tolerate the neurontin enough to get it to a high enough dose to help. so I cant say if it would have helped or not. I had one of the rarer side effects, if you knew my history not a shocker. My doc also says elavil could help, I tried it for sleep but it didnt work. I also had it up to my elbows, shooting pain,I used to ask my husband to rub my hands. when I shave my legs I can feel certain areas on my calves up to my knee like a track that is numb. ankles definately. It really causes weakness. I would drop things because I'd forget I was holding them, my flip flps would fall off my feet when Iwas sitting because I couldnt feel them. On the beach I would have to look at my feet, or I would lose my balance. I was anxious in crowds because I couldnt compensate for sudden movements of others. My family was usually at my side although I did not fall thank goodness. I think it looked worse. I remember being embarrassed thinking I looked drunk. All of this is better, not so obvious. not sure how much better it will get. The point is you should ask your doc about some of these things, they may work. the neurontin really seems to help people especially with the pain. and Mama g is geting some relief from lyrica. Oh yeah I had it on my face briefly too, felt like a bug was crawling on my face. fun fun
You really had it bad - I'm so sorry. Mine isn't that bad at all. Didn't have it in my feet or face. boy is it true what they say... look at some elses problems and your own won't seem so bad. How did you ever get through it? did it gradually diminish??
Yea, my dr. knows all about it. What he's given hasn't really helped - unless it has and I don't realize it. cuzz during the day -I'm busy at work and pay too much attend to my fingers. But last night I did get some real good sleep.
YOu have no idea how much I appreciate you sharing your story with me.
Love, Kelly0 -
ThanksDebbyM said:I've never had neuropathy,
I've never had neuropathy, and, I am sorry for all of you that have it. Praying that something will help.
And, that is a beautiful picture of you and your grandbaby!
Hugs, Debby
This picture is my favorite too my husband just took the picture, didn't even know it. 0 -
Hey Kellynew2me said:Oh my goodness Carkris
You really had it bad - I'm so sorry. Mine isn't that bad at all. Didn't have it in my feet or face. boy is it true what they say... look at some elses problems and your own won't seem so bad. How did you ever get through it? did it gradually diminish??
Yea, my dr. knows all about it. What he's given hasn't really helped - unless it has and I don't realize it. cuzz during the day -I'm busy at work and pay too much attend to my fingers. But last night I did get some real good sleep.
YOu have no idea how much I appreciate you sharing your story with me.
Love, Kelly
The picture is adorable....aren't grandchildren just about the greatest thing! As far as neuropathy, I had it in both hands and feet after completing chemo two and a half years ago. Over a period of months, both hands and my left foot subsided, leaving me with neuropathy in my right foot toes (all but the big toe). Today I still have numbness in that right foot, and have tried acupuncture to help with the pain. It did help, but has not relieved it entirely. For me, it has been almost 2-1/2 years, so hopefully it will eventually go away. I hope you find relief soon. However, as you said, when you look at the problems that others are having, neuropathy seems to be so trivial. Hopefully you will find relief soon. Hugs, Judy0 -
Beautiful picture! PrayingCR1954 said:Hi Kelly...
I have neuropathy in hands and feet. At one time, it extended up my arms, past my elbows, so just having it in my hands is good! Finished chemo in late 2008, and still can't feel very well..like to pick up small things. They hurt though. And the cold really, really makes my hands hurt.
I also sometimes have a problem feeling correctly with my feet and I trip at times.
I did not have Taxotere, but had Abraxane, and that really did a number....
I basically put up with the pain until recently, when I was put on Neurontin. I really think that it is helping...not waking at night in pain....although, it apparently helps some and not others. I think I may be one of the lucky ones that it works on. I am on a small dose and can increase it myself, up to a certain point.
My best advice is to ask your doctors for help. Nobody wants to go through that pain and they (your doctors) can probably find something to at least reduce it, if not eliminate it altogether.
Hugs,
CR
Beautiful picture! Praying your doctors can help you.
Hugs, Kylez0 -
Hi Kelly, I, like cakris,
Hi Kelly, I, like cakris, have neuropathy really really bad. Mine was from taxol. They actually had to stop my treatments because of the nerve damage. It runs up both legs to about my knees, I fall down sometimes and I walk around like I'm drunk at times, mostly when I'm tired. It goes up both arms almost to my elbows and I drop stuff all the time. My face is numb to my ears. I've been out of chemo for one year and it has gotten a little better but its not gone by any means. I'm on lyrica and it does help with the pain, I take 100mg three times a day. I'm so sorry to hear of your struggles with this and I hope yours gets better soon. I see a neurologist and it would probably be a good idea for you to get one too, they specialize in this sort of stuff. I'm sorry cakris that you have/had it so bad too and yet it's nice to know I'm not alone, I thought I was the only one that got hit this hard with it. The picture of you and your grand baby is BEAUTIFUL!! I love it!
Kari0 -
On the Lyrica.... I forgot
On the Lyrica.... I forgot to tell you that Lyrica does help but it comes with some side effects that I don't care for. Makes me kind of in a "DUH" state of mind at times. I'm in my fifth year of college and "DUH" state of mind is not good, lol. But, it does help with the pain. Its VERY expensive too, go figure, a med that works, of course it's expensive. I pray you find relief soon and I also pray it diminishes for you.
God Bless,
Kari0
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