• Peripheral Neuropathy of Hands

    Asked by AJFL62 on Sunday, November 23, 2014

    Peripheral Neuropathy of Hands

    Anyone else have this issue? I take Gabapentin, 300mg, 3 each time, so 2700mg. total....nothing much is helping. Even do the hand exercises and have two spongy balls to use to help and some other hand exercises, to no avail.

    Anyone else have this issue and what do you do?

    Did your Onco prescribe anything other than Gabapentin for your neuropathy??

    Thanks for any help if you can....

    36 Answers from the Community

    36 answers
    • Chatay23's Avatar
      Chatay23

      Have it in toes and finger tips.... Onco doc put me on gabapentin too... Twice daily... Has helped feet somewhat but finger tips .... Still bad! Hang in there!!

      over 6 years ago
    • barryboomer's Avatar
      barryboomer

      I'm not sure there is anything once you get it. Maybe SOME here will know something. Good Luck!

      over 6 years ago
    • karen1956's Avatar
      karen1956

      I know some people who take Lyrica..

      I took gabapentin for joint pain and it was great for night sweats as well. Hope you find some relief.

      over 6 years ago
    • GillianJ's Avatar
      GillianJ

      Mine has gotten bad too. I was hoping it would get better when I finished chemo earlier this month. I see my oncologist this week and plan on asking him what to do to help with the pain. If he has any suggestions that work for me I'll let ya know.

      over 6 years ago
    • serenity101's Avatar
      serenity101

      Gabapentin didn't work for my mom, so they switched her to Lyrica, which did work.

      over 6 years ago
    • Julie99's Avatar
      Julie99

      I take neu400mg 3x/daily. This is the 4th prescription I've tried. First a diabetic cream, then lidocaine patches, then Lyrica and now this. The cream & patches did nothing. I had trouble with Lyrica with depression. I still have pain & weakness but I can feel it if I forget a dose.
      I've aldo noticed it changes depending on the weather and air pressure changes. I'm worse in the cold. And in shoes.
      my neurologic oncologist told me in May that each year I may see more improvement. I hope so! Standing up after 10 minutes off my feet and I struggle to walk, but walking for 10 minutes and my feet start to go numb!

      over 6 years ago
    • victoria14's Avatar
      victoria14

      Sorry to say, after eight months off chemo, I still have per. neuropathy. I was given lilika (lirika?)--
      but it hasn't helped much, no worse, no better. HOWEVER, I went to a clinic with a orthopedist who took some tests (X-ray, MRI) and said it isn't related to chemo at all; that I have a spinal
      problem (spinal plates getting close together) and that is what is causing the numbness. Great news, as you can imagine, right after dealing with cancer and chemo. Well, I hope and think you do not have this same problem, but I just wanted to communicate my experience. I truly send my best wishes to you. Victoria 14

      over 6 years ago
    • hollice's Avatar
      hollice

      So sorry to hear you have this ... I had it for 3 years now. It is in my feet/legs and hands/arms. I tried Gabapentin ... it did take the edge of the pain off, but it also had unwanted side-effects too. So I stopped taking it ... started a anti-inflammatory diet, exercise (low-impact) daily and taking supplements. I also started acupuncture ... I'm still achy most of the time, but without those unwanted side-effects.

      Wish you luck on finding your method ... many blessings!

      over 6 years ago
    • AJFL62's Avatar
      AJFL62

      Thanks everyone! I will try Lyrica if my Onco will prescribe it when I see her in a few weeks.

      It's an annoying feeling. I had a bit of carpul tunnel before and it was nothing like this. As I had Taxol.... those chemo treatments my fingers were getting the neuropathy!!

      Hugs to each of you dealing with this as well! Thanks for your replies!

      over 6 years ago
    • fiddler's Avatar
      fiddler

      I have "early onset" neuropathy - started mid-way through AC and before T. I tried L-glutamine to no avail. The thought of heavy duty meds sends me fleeing into the night, screaming "Noooooo."

      This past weekend some close friends told me about a topical oil with THC in it that is known to help with neuropathy. My friend has a medical card for THC and said he'd get me some of the oil to try. If it works I'll get my own medical card. It's annoying to say the least.

      I have 'saved' the link to your question and will report the results here.

      over 6 years ago
    • GLW's Avatar
      GLW

      I developed neuropathy in my feet and hands while on Taxol. I have been off of it for four months now and I still have it. I felt it was improving before the weather got cold which exacerbates it. I am in Connecticut and you are in Florida so that won't be a problem for you...except for the occasional temp dip..I never have pain...just tingling and numbness. I am on Gabapentin but not sure it helps.....afraid to go off of it just in case....I find that keeping my feet covered really helps. As for the hands...my nails were affected, turned blackish and snapped off...very attractive!! My fine motor sills are nonexistent.....I drop things all the time... can't button anything or put on a necklace....but in the large scheme of things it is not a huge price to pay.....

      over 6 years ago
    • Horselady46's Avatar
      Horselady46

      I have it in both fingers and feet. Nothing seems to work for me, so I just endure it and try not to think about it. But after three years past chemo I am seeing some improvement.

      over 6 years ago
    • jojo2's Avatar
      jojo2

      Hi, I am a breast cancer survivor. There is a newer drug for diabetic neuropathy that is producing good results for many with chemo induced neuropathy. It is called Metanx and basically super charged Vitamin B varieties. I am asking to try it on my next check in as 4 years out I still have numbness. My symptoms are much improved from the end of chemo. I was helped immensely by acupuncture. I went from no sensation in my left foot to feeling like I was walking on a hockey puck. Annoying,but still an improvement from no feeling. THE REBUILDER also helped. I called a chiropractor nearby who used it and was told it was effective and worth a try. I bought it myself online because at that time it would have been a fight with insurance and get denied anyway. I used it 2x a day for over a year, then gradually decreased how often to not using it 3 years later. I still have some numbness but don't think of my feet with each step. If I overdo and it feels worse, I get out THE REBUILDER again. I see there are a lot of specialized clinics beginning to offer different methods to improve the condition including cold laser treatments to stimulate the peripheral nerves. You can try one to see which method/s help you and go from there. Best wishes. jojo2

      over 6 years ago
    • barryboomer's Avatar
      barryboomer

      Just Curious.....DO they tell you of THIS Particular Side Effect before they give the chemo?

      over 6 years ago
    • angelajoyce's Avatar
      angelajoyce

      Hi, I finished my 4th round of Chemo on November 14th. After this round of chemo I developed PN. Its on the tips of my fingers and toes. it's annoying, but it is not debilitating by no means. I am being prescribed the Gabapentin but have not started it yet. I hope it helps, because I love to walk/text'/type, which keeps my sanity during this time. Would love to know how the topical oil with THC works. Thanks! And good luck!

      over 6 years ago
    • GLW's Avatar
      GLW

      Barryboomer: After my first meeting with my oncologist I was set up for a one-hour meeting with a facilitator that went over every possible side-effect that I might develop. She also gave me strategies to deal with them and ways to lessen them such as icing my fingers while receiving the Taxol thus preventing them from falling off...hopefully. Mine just turned blackish and when it grew out a few snapped off at the end.....This really helped as I knew it was an expected SE and not something else going wrong.

      over 6 years ago
    • fiddler's Avatar
      fiddler

      Barryboomer: no, they don't - maybe because not everyone develops it

      over 6 years ago
    • barryboomer's Avatar
      barryboomer

      I guess it's best to know what's coming. BUT when they read off these side effects to they go over the odds of doing or not doing and outcomes and life span etc. or etc....OR do they just tell you that you need to start immediately or else?

      over 6 years ago
    • fiddler's Avatar
      fiddler

      GLW - your doc sounds like a good one - wish I had been told everything - it's easier when I know all the possible outcomes so there are no surprises in the end! However, my onco doc told me not to use ice because it constricts capillaries and the chemo may miss some cancer cells that could be "hiding" where the areas where ice is applied.

      over 6 years ago
    • mpt33905's Avatar
      mpt33905

      My feet were ok but my hands had back neuropathy. I requested a consult to occupational therapy (OT). He did the eval and gave me some of what I call silly putty to use. He also recommended TENS gloves!!
      These are gloves sprayed with saline then you hook them up to a TENS unit. What a difference it has made. The are made by EMPI and are covered by Medicare and most insurances. It is worth a try!

      over 6 years ago
    • GLW's Avatar
      GLW

      The only preventative thing I was told was the finger icing and that was by the chemo=-nurse. I only did it for the last two sessions but I do feel it prevented total nail fall-off. Are you talking about my odds with or without chemo? Obviously, they believe chemo is the best route to take and then they develop the best course of treatment for you. The treatment plan I am on was developed by Dana Farber and has a 98% success rate....I was stage one...no node involvement and Her2 positive...this treatment is designed for my type, stage etc. My onco presented my case at a cancer conference that was held two days after we met.....nine other oncologists from our area agreed with him....so I feel I had ten opinions....also,interestingly enough, three radiologists told me this was probably not cancer because of shape etc. I asked for a biopsy....he also presented my biopsy pics and not one radiologist saw any "screaming signs of cancer"....I am a very lucky girl(I use that term loosely as I am 78..tomorrow..) and am doing extremely well....I am moving on with my life and feel I can take anything life throws at me.....hopefully, no more cancer!!

      over 6 years ago
    • Roses4ever's Avatar
      Roses4ever

      AJFL62-So sorry to hear you have to deal with this. My heart goes out to you. I'm now 8 months out of chemo and have had severe nueropathy in my hands, wrists, arms, and shoulders. Mine has definitely been debilitating. I had to go on opioids as the Gabapentin did nothing. I have had to go to ER twice thinking my wrist was broken. I can't even pick up a glass to drink sometimes. My doctor has me on methadone cause he says it's the best opioid for the nerves. I also take Motrin for inflammation and percaset when pain is not tolerable. I must say he did bring me from a level 10 pain to about a 6. Some days I'm even a 5 now. I'm also trying to walk or do yoga 30 min. A day and eating much better too. One day I ate a ton of sweets and couldn't even move the day. So I know sugar is my enemy. All we can do is try our best to feel good, and definitely take it one day at a time. Cause if I think I have to live like this forever I'll get so depressed. But today I could deal with it and and today I could do my best to be healthy. Your in my prayers! Much love'
      Ps BarryBoomer, I was told nothing:(

      over 6 years ago
    • sue1037's Avatar
      sue1037

      I use vitamin B12, I have numbness in 3 toes on each foot, can't seem to get that feeling back, I do believe the vitamins helped because I did have it in both hands and both feet

      over 6 years ago
    • barryboomer's Avatar
      barryboomer

      Check this out....maybe it can help!

      http://www.medpagetoday.com/MeetingCoverage/AADE/47120

      over 6 years ago
    • fiddler's Avatar
      fiddler

      GLW - you have excellent care! I was just mentioning what my onco doc said, not to criticize what you wrote or your treatment plan. I was Stage 1A Triple-negative, so they threw the kitchen sink at it and crossed their fingers. Chemo ended in May 2013. I still go every 3 months for a check up and so far no tumors! PN still there though - some days it gets worse, but it's manageable.

      When I went for the mammo, the doc said it was negative for cancer. Ten minutes later she called back and said she was uncomfortable with the dx and had me come in for a needle biopsy, which showed the cancer.

      She saved my life.

      I'm 68 and have lots of life and options left in this aging sack of bones, tissue and liquid.

      over 6 years ago
    • GLW's Avatar
      GLW

      Fiddler: I understand that triple negative is the hardest to treat. I guess there are no target drugs so far...Glad you are doing well so hang in.......I sometimes think because we are older that our attitude is a little different from what it might have been had we been in our 30s or 40s.... our families are raised and we don't have so many depending on us....

      over 6 years ago
    • PinkPickle's Avatar
      PinkPickle

      Ouch! I totally get it! I have PN throughout my mastectomy area...arm, back, side shoulder and chest. I 'm 4.5 years out from my initial surgery and have tried everything out there. Laser treatment was expensive and didn't help, lyrical and I didn't get along at all, lots of opiates in different strengths, PT, and a ton of antidepressants...so far wwhat has worked the best is my TENS unit , gabapentin and opiates.
      I have refused to let it slow me down too much, but frankly, if I didn't have a fabulous husband, a brother with a business who lets me work in the summer and and amazing palliative care Doc. I'd be pretty depressed!!
      My pain can be a "pain' in the patoot, partly because I push it a little too hard a little too often...can you tell I'm not that good at sitting still?
      Best advice to you is to find a pain specialist who gets you. It took me a long time to find my team of Docs but I'm glad I did!
      PN can be very frustrating and just because something works for one person doesn't mean it will work for everyone. Don't be surprised if it takes a while to dial in exactly what works for you!

      over 6 years ago
    • fiddler's Avatar
      fiddler

      GLW ... that rings true for me. I've had a very good (and adventuresome) life. Bless you GLW and I hope that you have a great holiday season!

      over 6 years ago
    • fiddler's Avatar
      fiddler

      PinkPickle: Would you be interested in knowing a self-hypnosis dealy-bob that I teach clients to relieve some of the pain? I think it's "weird" how it works, but they immediately have some relief. And it seems to last....

      over 6 years ago
    • geneva63's Avatar
      geneva63

      I was taking all kinds of meds for pain and neuropathy, in my arms, back, legs, basically, whole body, now that I have done my chemo, it has made it all worse, and my doctors don't believe me, I take pain meds, that are very potent, and my doctor upped me only 10 more than I was getting, but the sad truth is I need one every 4hrs. and I am only allowed 4 a day, I have to make them last,

      over 6 years ago
    • AJFL62's Avatar
      AJFL62

      Barryboomer : Yes, I was told this could be a side effect from the chemo, mainly the Taxol.

      I've had an issue with mouth sores and have had to use the 'Magic Mouthwash', a Lidocaine viscous solution a few weeks after Taxol, and now again as I finished Chemo.

      Very annoying SE for both of these.

      over 6 years ago
    • Grammyma's Avatar
      Grammyma

      I wasn't prepared to deal with neuropathy in my feet. My PCP has me on 1000 Gabapentin, but the most it does is take care of the sharp pains. Periodically my feet feel like they have swollen to twice their size. She also told me to soak them in warm water several times a day, and at first I did, then proceeded to forget - brain fog! I know I can take a higher dose, but I question if it will do any good. Doc also told me to keep them warm, so I bought diabetic socks which I also wear to bed. I have to admit that none of the above does any good.

      over 6 years ago
    • barryboomer's Avatar
      barryboomer

      Most will NOT tell you this before hand ....WONDER WHY?

      over 6 years ago
    • victoria14's Avatar
      victoria14

      One more note from victoria14 over here in Japan. My gyn-oncologist AND my oncology-pharmacist both went over every possible side effects very carefully with me; trying to write as much in English as possible, so that I would understand it. However, I was so determined to
      do whatever it took to get rid of cancer cells that nothing they told me phased me then. It is hopeful for me too to read all these notes and see that sometimes it takes not months, but years
      for this to get better. . . For those of us still suffering, let's keep up HOPE!
      Oh, and from the women who wrote about Metanx, what do you mean by "REBUILDER"?

      over 6 years ago
    • Grammyma's Avatar
      Grammyma

      I've been reading all the replies and find that some of you have had neuropathy in your hands. I already have it in my feet, and my fingertips feel at times like they're burning. Is this how it starts in the hands? I already have benign essential tremors in my hands and instead of actually writing, I sort of draw the letters.

      over 6 years ago
    • DebbieI's Avatar
      DebbieI

      I have it in my feet and was taking gabapentin 600 mg three times a day. My husband is diabetic and has it in his hands. He takes alpha lipoic acid and Curamin and that helps him. I am slowly switching over to the supplements versus the gabapentin. And my Onocologist told me beforehand of the possibility of neuropathy. My husband's neurologist is the one to recommend the Lipoic Acid which we find at health food store.

      over 6 years ago

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