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peripheral neuropathy

lovemnms
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Hello!

I had surgery for stage 3 ovarian c. in May of 2008. In July 2008 I started treatments and went through 8 rounds of Carboplatin/Taxotere chemo. My last treatment was Dec. 2008. I seem to be doing fine.

I had so many side effects but the lasting one is
peripheral neuropathy of the fingers and hands. It started during treatment 7 and 8.

First my fingernails hurt, changed to an orange color and loosened from the nailbeds. At times they bled and were EXTREMELY painful. That started in Nov.

Now my nails are almost healed but my grip is weak, fingers/hands are numb/tingling and writing is difficult. I also have joint pain.

Has anyone experienced this??

Explore topics in this discussion:

Taxol Dizziness Surgery Burns Lamotrigine Ibuprofen Pain Peripheral neuropathy Lyrica Acupuncture Lamictal

30 replies

kla

I think you'll find many of us have had or still have this as a side effect. There are meds you can take and some have had good results with it .Discuss it with your Dr..
I battle my way through it . I usually start my day with ibuprofen and take it regularly. I recently broke a couple of fingers and it was kind of interesting in a weird way to feel pain as opposed to the numbness.
Be careful picking up heavy things as you think you've got them and you may not.My poor dog runs for cover when I go to a certain cabinet as I have picked up an iron skillet more than once to have it go sailing out of my hand,
You might want to rearrange things so that it's easier to pick up some things.Heavier objects that are breakable can be a goody.I have a collection of leaded crystal vases that sets above my kitchen cabinets.They were all gifts and are very precious to me.After trying to clean them myself and coming close to a serious break .I decided to only take them down when I could have help.
I also have decided that shoes that don't hurt are better than trying to wear things that look good.If I am going to be on my feet a lot I take an extra pair of shoes so I can switch . It seems to help.Massaging foot baths or hand baths help also.Switching from warm to cold also seems to help. Some are very sensitive to cold so wearing socks and gloves seems to help.I know a number of the ladies get either massages or see a chiropractor and that helps them.
The thing is keep your spirits up and you will find a away to cope.
Darn forgot the old wives tale. I also rub the spines of hot peppers on my aching feet and joints. The active ingredient is now available in a cream. It's called capsaicin. Not sure about the spelling there.This seems to interrupt the nerve sparking and works well .God Bless kate

lovemnms

I'm so glad to hear from you!

I've broken and dropped many glasses and pots. I've started to use plastic cups and It works for me.

Cutting myself while preparing food is another issue. I try to let someone else do it for me.

I have a weak grip and like you mentioned, picking up heavy items is difficult.

I really haven't re-arranged anything since I have two teens and a helpful husband.

As for my dog-she doesn't move fast enough when I drop things! Poor puppy-hopefully she'll learn to stay out of the kitchen when I'm in it!!

JanJ

I experienced this in my feet and my doctor suggested something I buy at a natural food store: Alpha Lipoic Acid. It seems to have helped me, and I like the fact that it's not another medicine!
Good luck.

lovemnms

Hi Jan J,
I looked up alpha lipoic acid and bookmarked it for reading later. Here is the site I found it on for anyone else who is interested.
http://www.alpha-lipoic-acid.com/

I take Glutamine to help restore my torn, sore and weak muscles. My doctor recommended it. It probably would help more if I took it daily as I was told to, but s ometimes I get lazy and don't take it daily.

kla

Plastic works well for me also.My daughter thought I was crazy when I bought a picnic set at a garage sale.But the corelle is more dangerous than the ironstone or china on my tiled floor.I also got a little tea cart then if I have company I can transport without worrying about throwing something at my guests.It's kind of funny a lot more elegant than my usual lifestyle. Most get it others kind of look at me a bit like I've gone back a century or so, but it works.My dog is big and a lot of help keeping my perspective up .and giving me a lot of help if she can and feeling bad when she can't.She even get's my neighbor to check on me when I'm not feeling well.Last week I was struck with a migraine and just wasn't up to much of anything.So who shows up but the neighbor.Evidently my dog and she talk on a regular basis and when I'm not well the talk is different than when I'm fine.I thought I was the only one who understood her vocalization. To much info again. God bless and have a good day. kate

lovemnms

Thanks for writing. I like how you add a twist of humor to your stories. Keep writing.

kla

Dear lovemnms .gonna tell you a secret .There are a lot of decisions we have to make . Most of them are kinda sucky. I found out one that keeps me on less shaky ground . I can choose to either laugh or cry about some of this sucky stuff .Finding away to laugh about it makes me happier crying over things I can't change makes me sadder . I choose to be as happy as I can. Doesn't mean I never cry just means I try to be happy as much time as I can.God Bless and laugh kate

lovemnms

Thanks for the pep talk. I always could use one.

verlinda

I've found I really have to watch my salt intake. The more salt I eat the more neuropathy I have the next day.

lovemnms

I'll keep that in mind.

verlinda

I haven't worn "regular" shoes in nearly 2 years. During chemo, I started wearing crocs. The texture on the inside of the shoe sole gives me just enough friction that I can feel where I'm placing my feet. The pressure of "closed-in" shoes still hurts, although I did manage to wear a pair of tennis shoes a couple of days this month.

I found the imitation crocs didn't work. I bought them in several styles and colors. I may not be fashionable, but I can climb the stairs to my second-floor classroom! I don't remember how I found out about them. I buy mine at our local Hallmark card shop, but I also have ordered them online. I'm a weird shoe size--5AA, so I get a child's size 3, although they do have some adult 5's. Since the shoes don't fit snugly, the width hasn't been a factor.

lovemnms

Whatever works we use right?! You had success with Crocs and i've been wearing Sketcher ( the type that are form fitting almost like a sock!)

agg22

Hi,
I have been looking for glutamine to help my mom. I went to Walgreens but they called around and said that it was no longer available. Can you please tell me where you can get it?
Thanks,
Anne

Patricia123

I am on glutamine 10 grams three times a day for chemo and the five days after then once or twice a day after that.

The stuff works! If I miss it a day or two, I get the numb tingling.

It has no taste, we order it online as it is expensive in Walmart and Rite aid. But It is perfect for me.

I have heard of Vit B6 I think. I read about glutamine on a Mass General website. My doc approves, after rollig his eyes!

lovemnms

I think the glutamine helped my muscle aches. Sometimes we need to try supplements-my doctor thought it was a good idea.

--------------------------
I use, VPX Glutamine Ultra Pure 700gr . I bought it at a local Musclemag store. Here is the company link of the type I use.http://www.vpxsports.com/sports-nutrition-supplements/recovery-post-workout /ultra-pure-glutamine.aspx

cynsa

I am having really bad joint pain 2 months after my last chemo. Feet, knees hands. I have a weak grip and drop things frequently. will it get better?

Jen457

Patricia, I am on L-Glutamine also with the 10 grams 3 times a day for 5 days. I don't take anything after that. Will have to ask my Onc about it. I cannot believe how much it has helped me either. The soles of my feet no longer burn at night. I got mine at the GNC store. They told me to keep the receipt and bring it back if it did not work. My onc says that the studies so far do not show any improvement using the B vitamins. Have not tried anything else.

Jen457

I do have a question about the Alpha Lipoic Acid. It says that it protects cells which is not what you want to do when taking chemo, it would be defeating the purpose of chemo. I can understand taking it when not on chemo. Is there something I am missing regarding this?

Patricia123

Jen, I still take it twice a day and the neuropathy is getting better even while getting weekly taxol.

I drop stuff, have gotten third degree burns on feet walking across hot sand on the beach barefooted,,didn't even feel the pain. In the shower I get skin burns if I am not careful. I think all of my skin is not sensitive to pain like it was.

I do think that the steroid makes me bruise and makes my skin "thin",,it is like all of a sudden I am crepey like the old lady that I am but think I am not.

imsfair

Hi I can really understand your pain. My neuropathy started 3 days after my first treatment with Carboplatinum and Taxol. The pain in my feet is severe, as if I'm walking on sharp stones. We tried Lyrica but caused dizziness so had to stop that. I was told would go away but it has been 8 months since last chem. and no let up in pain. My hands are not too bad. One nail is raised from nail bed. I take additional B6 and B12 but it has not helped. I have tried creams and oils for diabetic neuropathy no help there. My Dr. tells me it will go away. This was the only problem I had with chemo. I guess I should be thankful but it is so hard when I can't walk very far. And unable to get a good nights sleep. My pain is worse at night. We have to keep a stiff upper lip. I am going to try Glutamine, Capscin and Alpha Lipoic Acid. Hope one of them helps. Thanks for the info. Irene

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