Neuropathy

Does anyone who has or has had peripheral neuropathy find that it gets worse.my hands and limbs seem more painful now than when I was first told I had it.i mentioned it to my gp but it was like I was making an absurd statement.i take amitryptiline at night for it.after all the trouble I had last year trying to tell a doctor there was something wrong I am very much doubting myself and don't want to make a fuss.carolyn x

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  • Carolyn...normally don't even have my PC on this late so hope it will be tomorrow when read this.

    I had dreadful peripheral neuropathy in my toes from Taxol and on the 2 nd recurrence I decided to do something, and went for regular acupuncture : 1 session before each chemo and 2 sessions after. It made a huge difference & I swear that previous uncleared neuropathy is practically gone. I know how acupuncture works, and I am still puzzled but delighted that it did. All the numbness is now gone, ie 4 months after finished chemo.

    So, while pain killers will help the pain somewhat, you should try acupuncture & see if the nerve feeling will come back. It will take a while, and it is an expense that most of us could do without, BUT it is our health and quality of life that matters.

    by the way, did you get a nerve conductive test done to check if the damage is permanent and also, it can check how far up your limbs the numbness has travelled. It is not invasion, just a bit time consuming.

    Regards, Maureen

  • Yes I have it an tinnitus. Make a fuss! You're not imagining anything.

  • I have found an amino acid supplement called L- Glutamine helped when i had my chemo with paclitaxel it is not expensive .

    please teach yourself how to make a fuss . You will get things done if you add " nuisence value "

  • lleviating Peripheral Neuropathy Symptoms

    351

    Posted in: Coping with Cancer, Health and Wellness

    Ask the Nutritionist

    Q: I have been told that B vitamins may help with peripheral neuropathy resulting from chemotherapy. What dose of these vitamins is safe and are there other nutritional supplements that can help?

    J.M., Richmond, California

    A: Peripheral neuropathy, a side effect of certain chemotherapy drugs, causes numbness and tingling in the hands and feet. The exact mechanism of this chemotherapy-induced neuropathy is unknown. Supplementation may help alleviate symptoms of neuropathy.

    Vitamin B6 is known to help diabetic neuropathy and may help manage chemotherapy-induced neuropathy symptoms when taken in a safe dose. Taking 50 to 100 mg of B6 daily is safe and may be effective. If you are taking a multivitamin and/or B Complex, check the amount of B6 so that you do not go above 100 mg total per day.

    Glutamine has been suggested to help chemotherapy-induced neuropathy, especially from Taxol. Taking 30g/day, as 15 grams twice daily, of Pure L-Glutamine Powder is considered safe for cancer patients. Try to find a powder without other "fillers" in the ingredient list.

    Alpha-Lipoic-Acid (ALA) seems to reduce symptoms of peripheral neuropathy in diabetic patients, and may help with symptoms of chemotherapy-induced neuropathy. Taking 300 mg twice daily or 600 mg daily is considered a safe dose. Symptom improvement is seen within 3-5 weeks. ALA is an antioxidant, and when used in combination with radiation treatment, may reduce effectiveness of the cancer therapy. ALA can be used for up to 4 weeks safely. For long-term use, speak with your physician and dietitian.

    Acupuncture is an alternative therapy to oral supplementation. Emerging evidence supports acupuncture as effective in reducing chronic pain associated with cancer.

    When considering supplementation, it is important to meet with a Registered Dietitian for an individualized dietary supplement plan.

    Alleviating Peripheral Neuropathy Symptoms

    351

    Posted in: Coping with Cancer, Health and Wellness

    Ask the Nutritionist

    Q: I have been told that B vitamins may help with peripheral neuropathy resulting from chemotherapy. What dose of these vitamins is safe and are there other nutritional supplements that can help?

    J.M., Richmond, California

    A: Peripheral neuropathy, a side effect of certain chemotherapy drugs, causes numbness and tingling in the hands and feet. The exact mechanism of this chemotherapy-induced neuropathy is unknown. Supplementation may help alleviate symptoms of neuropathy.

    Vitamin B6 is known to help diabetic neuropathy and may help manage chemotherapy-induced neuropathy symptoms when taken in a safe dose. Taking 50 to 100 mg of B6 daily is safe and may be effective. If you are taking a multivitamin and/or B Complex, check the amount of B6 so that you do not go above 100 mg total per day.

    Glutamine has been suggested to help chemotherapy-induced neuropathy, especially from Taxol. Taking 30g/day, as 15 grams twice daily, of Pure L-Glutamine Powder is considered safe for cancer patients. Try to find a powder without other "fillers" in the ingredient list.

    Alpha-Lipoic-Acid (ALA) seems to reduce symptoms of peripheral neuropathy in diabetic patients, and may help with symptoms of chemotherapy-induced neuropathy. Taking 300 mg twice daily or 600 mg daily is considered a safe dose. Symptom improvement is seen within 3-5 weeks. ALA is an antioxidant, and when used in combination with radiation treatment, may reduce effectiveness of the cancer therapy. ALA can be used for up to 4 weeks safely. For long-term use, speak with your physician and dietitian.

    Acupuncture is an alternative therapy to oral supplementation. Emerging evidence supports acupuncture as effective in reducing chronic pain associated with cancer.

    When considering supplementation, it is important to meet with a Registered Dietitian for an individualized dietary supplement plan.

  • It does go on for a long time, if not permanently, in my experience. And it seems to come and go - probably depending on what else you've been doing.

    I'm almost 18 months since my last chemo and still have it, though it's much better than at the start.

    I too found acupuncture very helpful for the joint pain which I also had with it. Epsom salt baths may help.

    Good luck with it.

  • I am also a great believer in epsom salts baths or foot bath. It soaks magnesium up into your body and also gets rid of the toxins, I found that it helped after the carbo taxol regime I started out with and I have kept it up. Not too often but enough.

  • Hi Carolyn, Are you diabetic ? It usually goes with that and yes it can get worse.I had it for ages before finally diagnosed with diabetes.

    Jackie

  • Morning, I have neuropathy and have been prescribed pyridoxine which helps because when I tried to reduce it my symptoms returned. It was prescribed by my oncologist at first but my gp now prescribes it monthly. Avis

  • Hi thank you for all your replies and the advice and suggestions.right now I would try anything so am going to look into all the things you suggested.its so nice to be able to ask for advice like this and I know I'm not alone.thank you again regards Carolyn x

  • Hi Carolyn

    I am in the US. I have permanent chemo induced peripheral neuropathy. Some days are worse then others. I take Neurontin and Cymbalta. It does help.

    I am also thinking about acupuncture but cancer ( 3 times) left me in a financial disaster..and I'll have to check into the cost..

    Hope this helps.

    Ingrid

    I

  • Hi Ingrid. Only now reading through all the replies when I saw yours. Appreciate your comment on the cost of acupuncture - but noted you were prescribed Cymbalta ; that is the only drug that I could not take. it was too upsetting on my system. Not quite allergic to it , just couldn't take it. Am booked in for some more acupuncture for knee, hip & leg pain/weakness at end of this week.

    Hope all good with you now though.

    Daisies in Ireland.

  • Hi Carolyn, To throw in my tuppence worth, I had neuropathy after my first dose of Paclitaxel, and reported it straight away, 'cos I'm a musician, and it freaked me out. I took B6, and was offered amitryptiline, though I didn't take it. However, I then had a severe allergic reaction, so had to stop take the taxol, anyway, and thank goodness, the neuropathy went away. You are not fussing, especially if it is getting worse - report it to your specialist. They might change the dose, apart from from anything else.

  • It's 2 1/2 years since I finished chemo and mine seems to have got worse from initial onset. Unfortunately I have type 2 diabetes and the drs keep blaming it on this. However I never had any problems before chemo, it started badly after first session AND I don't have any other form of diabetic degeneration eg I still have good pulse and feeling when they do the hair test. I just can't get rid of the numbness on my toes and intense burning feeling on the balls of my feet. I'm on gabapentin but nearly up to full doseage and even that's not fully effective. Have found rubbing feet with a mild menthol rub helps but there are times when I can't stand up it's so painful.I too am open to suggestions. Marilyn

  • Hi Dreamies.....yes, my neuropathy seems to be getting worse, too. It is a very common side effect, so I don't understand why your GP would doubt you. I was offered neurontin or Lyrica, but I will wait until my next appointment to make up my mind. I hate to take anything I don't have to. I don't let it limit my activities, but it can be very painful at times.....and, annoying all the time! I am about 10 weeks out from my last chemo treatment, and I feel good otherwise. I guess we have to be grateful for what we do have. I hope you feel better soon.

  • Did not have neuropathy in hands or feet, but I did have that aweful metallic? Taste in my mouth. Finished my chemo (tax/carb) 6 months ago an I still sometimes get that horrible taste but it doesn't last as long. It seems that when I am hungry it happens now. Strange!!

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