What does neuropathy feel like? Could this be it?

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

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 said:

My last chemo was in December

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

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.

Tamlen said:

Cold laser therapy?

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.

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 

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.

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 said:

Neuropathy and Shedding Skin

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?

I wonder if it could be this:

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

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