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What does neuropathy feel like? Could this be it?

zsazsa1
Posts: 290
Joined: Oct 2018

Zsazsa the Ice Queen needs to know if this could be the beginnings of neuropathy.  I had treatment 5 of Carbo/Taxol/Herceptin a little over a week ago.  About 16 yrs ago, I had a nerve taken out of my left foot, between the 3rd and 4th toes, because I had a chronically inflamed neuroma from compression.  After the 4th treatment, I began to have a bit of numbness in the ball of the foot under the 3rd and 4th toe knuckles, and it's increased with this 5th infusion.  But last night, as I was trying to fall asleep, I had a very sudden horrible jolt of pain in the bottom of the tip of my big toe.  It felt just like a sudden rat bite (yes, we used to have pet rats, and I was bitten by the first pair who hadn't been handled in a long time).  The sensation came about three times over the course of five or ten minutes, then none since, thank God, because if this is neuropathy, I don't know HOW people live with it!  I am really good about pain, and this was just terrible - a sudden, shocking pain like a someone had plunged an ice pick into the toe.

Honestly, if this is it, I do not know if I dare risk doing infusion number 6.  I hear that people get a little temporary neuropathy first, and then it becomes permanent with subsequent infusions.

CheeseQueen57's picture
CheeseQueen57
Posts: 781
Joined: Feb 2016

Although I think people experience it differentl, my neuropathy is a general numbness of my small toes and the pads adjacent to them. I have not, fortunately had pain but it’s been almost 3 years since my chemo and it’s not gone away. 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

During chemo I experienced sudden, seemingly random pain jolts in various parts of my body. Some of them were strong enough they almost made me shriek! I recall that several of them seemed to happen in places where I'd had prior surgeries or broken bones, including a spot on my foot that I've broken several times and in ribs I'd broken years before. I never really got a good explanation from anyone, but did wonder whether it was somehow related to all the bone pain chemo causes some of us.  I never had anything more than those random jolts, and no neuropathy (I was a dedicated hand and foot icer during chemo).

Tamlen

BluebirdOne's picture
BluebirdOne
Posts: 191
Joined: Jul 2018

first in my fingers which resulted in numbness but has since subsided. It started after the 1st treatment. Then gradually, despite icing hands and feet, I my feet started have jolts of pain, a minute or so apart, for about 10-15 minutes, mostly at night. This has lessened over time but still happens almost every night. They decreased my chemo strength by 20% after the first round so that the neoropathy and other side effects would lessen. Mostly my pain is like small jolts of electricity or a thin needle stabbing. 

Denise

zsazsa1
Posts: 290
Joined: Oct 2018

If it only happens for 15 - 20 minutes a night, I guess I ould live with it.  If it were to happen all night long, I could never sleep through it, it was so severe.  Let's see what happens tonight.

 

BluebirdOne's picture
BluebirdOne
Posts: 191
Joined: Jul 2018

Compared to others, I feel fortunate it has not been terrible and it has definitely eased a bit. I worry more that down the line the neuropathy will get worse. It mostly happens in the evening, and then sometimes as I am trying to fall asleep, but it doesn't wake me up, at least I have not thought waking up was attributed to pain. Docs said that it might or might not go away 100% but it should get better. I agree, if this is all the neuropathy I will ever have, it is ok. 

MAbound
Posts: 829
Joined: Jun 2016

I was warned to exect some mild numbness or tingling in my hands and feet prior to starting chemo, but what I got was intense burning that would radiate up over my knees and elbows. Nothing sharp or electric or intermittent about it. That was the worst part... there just was no chance to catch my breath or even a catnap like you do when you're in labor. The first few weeks of it was the worst until I found out about hypothermia slippers and mittens and got them. I really thought I was going to die from lack of sleep before the cancer could get me. I just about lived in ice throughout chemo and after until the B12 really started to help. Neuropathy intensifying from what it is now is probably my greatest fear of ever having to go back into treatment again. Nothing anyone ever tells you about it does justice to how awful it is and even if it abates with time, it's always the most noticeable at night when you need to sleep. I hate it!!!

EZLiving66's picture
EZLiving66
Posts: 1320
Joined: Oct 2015

My last chemo was in December of 2015. After only three chemos, I have awful neuropathy! Yes, for me, it feels like somebody is sticking an ice pick on my feet and calves. Sometimes it also feels like my feet are on fire. It usually starts around 9 pm and goes on until around 3 am. It wakes me up from a sound sleep or keeps me from falling asleep. I walk during the night which helps relieve the pain. I have tried EVERYTHING!! Medication, heat, cold, acupressure, compression....nothing except Nyquil (I think it makes me sleepy) has helped and it's been well over three years. Some nights when it's really bad, I just sit here and cry. LUCKILY, I can sleep late in the morning since I rarely fall asleep before 3 am.  A friend's husband is using acupuncture and although my doctor recommended against it, I may try it as a last resort.

I sure hope you get better!!!

Love,

Eldri

BluebirdOne's picture
BluebirdOne
Posts: 191
Joined: Jul 2018

I would try the acupuncture as it might work. I had some done on a painful knee and it really helped, but this was not from neuropathy, just osteoarthritis. I get pain n my one calf mostly in the evening but did not think it was neuropathy as I thought that was mostly limited to the extremities. But with arthritis I get aches and pains in all of my afflicted joints. 

Also because I have terrible insomnia, I Eat a THC gummie 10 mg. every night and I sleep much more deeply than without it. 

Denise

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

EZLiving, I've not had a reason to try it, but my former onc had told me that if I experienced neuropathy, I might consider cold laser therapy. She said she'd had a fair number of patients get substantial neuropathy relief from it, though it was only anecdotal. I don't know anything about it but thought I'd pass this on since what you're going through sounds miserable.

EZLiving66's picture
EZLiving66
Posts: 1320
Joined: Oct 2015

I saw an ad for it here in Florida and I think I'm going to check it out. I have a doctor's appointment - he's a DO instead of an MD - in March and I'll ask him about the cold laser and the acupuncture. I've been told there are a lot of quacks around here so you have to be careful. I also have the name of a massage therapist who does acupressure. A friend uses her for neck and shoulder pain and says she has worked wonders. Hopefully she can fit me in soon.  I'm also going to see if my new doctor will put me on Lorazepam again. I think it helped with the neuropathy AND with my IBS which was made 100 times worse by the chemo.

Love,

Eldri 

barnyardgal
Posts: 198
Joined: Oct 2017

One of my friend's tried acupuncture after neuropathy from chemo. It worked for her feet but not her hands. She does the laser on her hands and it really helps but she does have to keep it up.

Donna Faye's picture
Donna Faye
Posts: 215
Joined: Jan 2017

I had citoxin and andramicin 25 years ago. My toes have tingled ever since. Then had 3 carbo/toxol 2017; tingling increased and seemed to move up my legs. 3 cisplatin in 2018 and now have tingling 24/7, sharp pains in various toes that demand getting up and stompting around to control. I take B12 and B6 every day and try to have a massage once or twice a month. I have learned to live with it but it is annoying.  Have tried other things but nothing stops it. I refuse to take any meds like Lyrica as the side effects sound worse. Water exercise helps.

pinky104
Posts: 574
Joined: Feb 2013

With my first chemo, the soles of my feet were completely numb, and I fell a couple of times because of it.  I had no jolts.  Nothing changed much with my chemo from my second surgery 7 years later.  But now my cancer is back in the muscle next to the hip, probably pressing on the nerve that runs over the  hip, and I've been getting terrible jolts of pain, numbness down my leg, and burning pain down the inside of my leg.  The jolts are sudden things that feel like someone is jabbing a needle into me.  I've had them on the right side of my thigh, the inside of my leg by my knee, and in my gut about where my bladder should be.  They've kept me awake for four or five hours at a time.  Now, I'm taking two Gabapentins at bedtime and two extra strength Tylenols, and they're helping me to sleep. I hope your jolts are just from neuropathy. I understand they usually are. 

cheerful
Posts: 244
Joined: Apr 2011

Hi Ladies:  I had UPSC - Stage 1 in February of 2011. I went through 6 rounds of chemo and 3 rounds of brachytherapy and was done everything by the fall of 2011.  I had a little neuropathy in 2012 but it was on its way out as I saw a neurologist then for one appt and then it left me.  I never thought of it until last February when I got these really awful stabbing pains in my feet and all through my body like my spine and hands and my neck area.  I lost a little muscle under my arms as well.  The pain is mostly in my left hand and sometimes in my feet and also some at the top of my spine. I did see a neurologist last year in March and I had a needle test which found out I have a mild case of neuropathy that effects the sensory nerves.  My neuro doctor is chief of the neuro dept at a local hospital in my area and she is an excellent doctor so she prescribed me 300 milligrams of Gabapentin that I take 3 times a day - one in the morning, one at lunchtime and the other one at nighttime.  It helps a lot the medication and I sometimes get a little pain in my left hand and sometimes in my feet although most days I do well with it and it bothers me very little.  I go back and see my neuro doctor next month and I will see where I go from here whether or not she will up my dosage or just keep it the same.  Anyway, most days I do well with it.  It does affect people in their 50s and 60s from what tne neuro doctor told me. She said if a person were to get neuropathy in their late 60s it's beter than a person getting it in their 50s obviously.  I do wonder though why it would take 7 years for me to get this neuropathy especially after all this time.  I do hope it will at some point just leave me - that is something that I will have to wait and see on.  Anyway, I do sympathize with the other ladies that have the neuropathy as well.  This is not an easy thing to have to get through or have to live with for this matter.  I did fear the worse initially and thought I had a fatal disease, and I was so thankful it was nothing more than neuropathy and I was not diagnosed with something fatal as that would be very devastating so to me this was good news as neuropathy can be treated with medication.  Obviously, it has been 8 years since I last went through a diagnosis of UPSC along with chemo and brachytherapy. Back in 2016, I did have a reoccurrence of UPSC, but amazingly, the cancer just left me and my oncologist is baffled since it left me after a few months and I have been in remission ever since. I did not need chemo the 2nd time around.  I just see my oncologist 2x a year and he has me going for an ultrasound of the abdomen and pelvis and blood work 2 times a year.  Anyway, i will keep you ladies posted on how I am doing with neuropathy.  

Cheerful

a/k/a Jane

candy546
Posts: 10
Joined: Feb 2019

Hello all, I had my first round of chemotherapy (Carboplatin and Taxotere) on January 29 of this year.  A few days later, I started with throbbing pain in all of my fingers on both hands and an inability to bend my fingers without pain.  I went back to the treatment center so that they could look at it and I was told its most likely peripheral neuropathy.  A few days later, I began a massive shedding of skin on my fingers that is still going on.  As the skin sheds I am able to move my fingers more freely and the pain has subsided a great deal.  Now I have to go back for my second infusion next week and I am dreading it.  I will see my oncologist a couple of days before the infusion and hope he has some advice to give.  Has anyone had skin shed with neuropathy?

LisaPizza's picture
LisaPizza
Posts: 207
Joined: Feb 2018

I wonder if it could be this:

 

https://www.cancer.net/navigating-cancer-care/side-effects/hand-foot-syndrome-or-palmar-plantar-erythrodysesthesia 

derMaus's picture
derMaus
Posts: 552
Joined: Nov 2016

Candy, check out some of the posts on this site re: using cold gloves and slippers to prevent neuropathy. There are a LOT of posts and members have some great suggestions. I'd suggest you look into this sooner rather than later since you're already having effects. Good luck!

CheeseQueen57's picture
CheeseQueen57
Posts: 781
Joined: Feb 2016

I wish I had known but I have such bad arthritis in my hands and feet I can’t imagine icing them. 

candy546
Posts: 10
Joined: Feb 2019

Thank you all for the advice on Neuropathy and possible erythrodyesthesia.  I will bring this to the attention of my oncologist on Tuesday.  

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