Neuropathy issues

Since finishing FOLFOX, I’ve had some mostly annoying neuropathy symptoms. My fingers and toes tingle if they touch anything and sometimes the skin feels tight, like when you have a healing sunburn. It’s not truly painful and it doesn’t wake me up at night. However, it does make doing things with my hands difficult, as the sensation when my fingers touch things is unpleasant. My oncologist thinks since it came on so late that it will go away with time, so I don’t really want to take anything. I’m finding it difficult to work on any of my craft projects and so I’m getting bored. Does anyone have any tips for dealing with it?

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Unfortunately

    Unfortunately for me it is permanent so I'm stuck with taking medication everyday.  Some days are worse with the pins and needles stabbing at my feet and hands especially when it's cold outside.  There are a lot of people on here where it started out with some symptoms and gradually got better.  Hopefully it will lessen over time for you.

    Kim

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    edited April 2019 #3
    Funny I should be reading this...

    because right at this moment, I have an itch on one of my toes. Becasue I have neuropathy, I cannot for the life of me scratch the right part, and its driving me crazy. 

    Neuropathy is weird.  I have it in my fingers, and from my knees down to my tippy toes. I am six year out of treatment, and it is not going away. 

    As for tips, the only thing I can suggest is to keep a food journal, and see if your symptoms are exacerbated by certain foods.  Mine definitely gets worse when my sugar intake goes up. Also Salt and acetic acid.

    I think that, for most people, it does go away or at least get allot better, as time passes. Hopefully you are one of the lucky ones. 

    Tru

     

  • Kazenmax
    Kazenmax Member Posts: 458 Member
    I’ve had neuropathy since my

    I’ve had neuropathy since my first round of xeloda. Numbness in the set and hands. Im 6 months out and I started having those shooting pains through my heels. Nothing relieves it, but eventually it will stop. I had no idea that certain foods could make it worse. I will have to track it. You learn something new everyday!

    thanks

    k

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    edited April 2019 #5
    Kazenmax said:

    I’ve had neuropathy since my

    I’ve had neuropathy since my first round of xeloda. Numbness in the set and hands. Im 6 months out and I started having those shooting pains through my heels. Nothing relieves it, but eventually it will stop. I had no idea that certain foods could make it worse. I will have to track it. You learn something new everyday!

    thanks

    k

    Sugar

    Kaz, I was talking to a Doctor friend about my neuropathy being worse after the intake of sugar, and he said that the sugars attach themselve to the nerve endings, which is either the cause of, or one of the causes of neuropathy; so it kind of makes sense that the symptoms would be exacerbated by sugars. 

    Tru

  • Inspired2013
    Inspired2013 Member Posts: 45
    Has anyone noticed that the

    Has anyone noticed that the neuropathy is pretty minor early in the day and progressively gets worse as the days goes on? I noticed that happening today.

  • Melanie67
    Melanie67 Member Posts: 24
    I don't know if mine is worse

    I don't know if mine is worse later in the day, or if I am just more aware of it when I am tired.

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    Not sure if this will help

    Not sure if this will help and I understand your not wanting to take anything but my chemo nurse told me to try "Nature Made Vitamin B Complex" specifically. I took one per day and it worked wonders for me. 

  • ThomasH
    ThomasH Member Posts: 106 Member
    What worked for me

    My neuropathy wasn't better a year after I finished my FOLFOX and my Onc told me that it probably wouldn't get better if that was the case. I found some research that says that lion's mane mushrooms promoted nerve growth so I gave that a try. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5987239/ If you want to give it a read.

    I used both that and the B100 complex. My neuropathy is now pretty much completely gone.

  • Inspired2013
    Inspired2013 Member Posts: 45
    Cymbalta

    Does anyone have any experience with Cymbalta for neuropathy? That’s what my oncologist has put me on in hopes that it helps. 

  • Nazareth
    Nazareth Member Posts: 88 Member
    ThomasH said:

    What worked for me

    My neuropathy wasn't better a year after I finished my FOLFOX and my Onc told me that it probably wouldn't get better if that was the case. I found some research that says that lion's mane mushrooms promoted nerve growth so I gave that a try. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5987239/ If you want to give it a read.

    I used both that and the B100 complex. My neuropathy is now pretty much completely gone.

    how long did you have to take

    how long did you have to take them and what quantity?

  • Phil64
    Phil64 Member Posts: 838
    ThomasH said:

    What worked for me

    My neuropathy wasn't better a year after I finished my FOLFOX and my Onc told me that it probably wouldn't get better if that was the case. I found some research that says that lion's mane mushrooms promoted nerve growth so I gave that a try. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5987239/ If you want to give it a read.

    I used both that and the B100 complex. My neuropathy is now pretty much completely gone.

    treatment

    Thomas, Thanks for sharing this. I too have permanent neuropathy, similar to what Kim describes, mostly it is just numness or tingling, but sometimes it is painful and interrupts my sleep. I found that a couple extra-strength tylonol helps to curb the issue and allows me to fall back to sleep.  However, I've been curious if there is a cure. I've heard that accupunture has been known to help? I was thinking about trying that. Now I'm curious about trying lion's mane mushrooms and B100. 

    I have also noticed that my neuopathy is aggrevated by eating badly (sugar), cold, and exercise. 

  • Nazareth
    Nazareth Member Posts: 88 Member
    Phil64 said:

    treatment

    Thomas, Thanks for sharing this. I too have permanent neuropathy, similar to what Kim describes, mostly it is just numness or tingling, but sometimes it is painful and interrupts my sleep. I found that a couple extra-strength tylonol helps to curb the issue and allows me to fall back to sleep.  However, I've been curious if there is a cure. I've heard that accupunture has been known to help? I was thinking about trying that. Now I'm curious about trying lion's mane mushrooms and B100. 

    I have also noticed that my neuopathy is aggrevated by eating badly (sugar), cold, and exercise. 

    yeah my oncologist suggested

    yeah my oncologist suggested accupuncture too- but i decided agaisnt it- suppsoedly alpha lipoic acid helps too- along with B-12 which is suppsoed to 'rebuild nerves' but I tried them for months and didn't seem to help much- will probably try the B-12 and lion's mane now- see what happens- I don't know if damaged nerves can be repaired though- soem sites say no- others say yes

  • Butt
    Butt Member Posts: 352

    Neuropathy on hands and feet got better with time. Now I developed severe back pain that they are not sure what it is but suspect it is some sort of neuropathy. It appeared after 3 cycles of another round of chemo. Even narcotic meds can t keep pain away. Made an appointment with the pain doctor. I am somewhat scepticsl but toward the end of life they can keep cancer pains at bay.

  • Phil64
    Phil64 Member Posts: 838
    Nazareth said:

    yeah my oncologist suggested

    yeah my oncologist suggested accupuncture too- but i decided agaisnt it- suppsoedly alpha lipoic acid helps too- along with B-12 which is suppsoed to 'rebuild nerves' but I tried them for months and didn't seem to help much- will probably try the B-12 and lion's mane now- see what happens- I don't know if damaged nerves can be repaired though- soem sites say no- others say yes

    Just read a post on an

    Just read a post on an Intermittent Fasting blog about someone who’s neuropathy went away when they reduced their blood sugar levels. And they had lost 50lbs. I’m down 30lbs but still have the neuropath. I do feel remarkably better though. Maybe when I hit 50 lb list mark I will report no more neuropathy too. :-)

  • abita
    abita Member Posts: 1,109 Member
    Phil64 said:

    Just read a post on an

    Just read a post on an Intermittent Fasting blog about someone who’s neuropathy went away when they reduced their blood sugar levels. And they had lost 50lbs. I’m down 30lbs but still have the neuropath. I do feel remarkably better though. Maybe when I hit 50 lb list mark I will report no more neuropathy too. :-)

    Did you gain weight on chemo?

    Did you gain weight on chemo? I gained 50 pounds. Trying to work on that.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    abita said:

    Did you gain weight on chemo?

    Did you gain weight on chemo? I gained 50 pounds. Trying to work on that.

    Nope

    Lost 16 pounds and now can't eat until late afternoon because of bowel issues and still have neuropathy before eating so for me it was definitely due to the Oxy not sugar or anything else.  My one doctor told me gaining weight usually is caused to stress because of going through treatment however can be caused by treatment alone as everyone is different.

  • mabel66409
    mabel66409 Member Posts: 6
    CDB

    My husband has been taking CDB under the tongur now for a little over 2 months.  It has certainly helped his appetite.  His nueropathy is still there but not as bad. He uses CDB cream along with the oil. 

  • RickMurtagh
    RickMurtagh Member Posts: 586
    ten years on...

    and neuropathy is still persistent.   Some days, when it involves pain I am thankful for the days when I can't feel fingers or toes.  I have yet to find anything that made a bit of difference.  Even when I was on fentanyl, if something triggered a pain episode (usually cold), I still felt the weird pain in my feet.  Today I jammed a thumbnail and boy did it hurt.  Funny that I find myself thankful that I can still feel the more severe real pains.  I guess, I just deal now, and don't intend to try something else unless something sure-fire comes along.  I am used to looking at what I am doing with my hands all the time since most of the time I just can't feel my fingers.  I guess I just got used to it...

    Here is to hoping you don't have to just get used to it...

    Best wishes,

    Rick

  • ThomasH
    ThomasH Member Posts: 106 Member
    Nazareth said:

    how long did you have to take

    how long did you have to take them and what quantity?

    Sorry about that, I don't get on here too often

    For exactly what I take, it is this stuff:

    https://www.vitacost.com/mushroom-wisdom-super-lions-mane-120-vegetable-tablets?q=lion's+mane&ta=lion'

    I'm not doing anything out of the ordinary with how much I take, I'm just taking it as per the label, 2 pills twice a day. That seemed to be good enough for me, although some studies I was reading that were using it to treat dementia were using doses of 30mg/kg, so for my weight (185lbs) that dose would be more like 2500mg per day, or 8 pills. It has a really large safe zone for dosage I guess.

    Thomas