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Sunday, August 05, 2012 Mary Ann asks

Q: Need new ideas for treating or at least coping with peripheral neuropathy

I finished chemo for breast cancer almost 3 years ago and am still suffering from neuropathy pain caused by taxol in both feet and my right leg.  I take lyrica, ibuprofen, and a number of supplements (acytel l carnetine, alpha lipopic acid, and some others).  Yes, the pain is less than at it's peak, but it's still constant and a major factor in my life - limits activities and causes depression.  Does anyone have any new ideas?  Please?

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Answers (2)
PJ Hamel, Health Guide
8/ 5/12 7:46pm

Mary Ann, my fellow health guide here, Phyllis, has long-term neuropathy. I'll alert her to your question, and she'll be answering ASAP, OK? She'd provide you with much better informaiton than I. PJH

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Phyllis Johnson, Health Guide
8/ 5/12 10:26pm
Mary Ann, I have found that the best people to evaluate and treat neuropathy are neurologists. They know about nerves and are likely to be interested in finding a treatment that is likely to work for you. I personally never get the least bit of relief from NSAIDS like ibuprophen. I have been helped by gabapentin (brand name Neurontin), a relative of Lyrica. The first neurologist I saw years ago tried me on several medications and vitamin combinations before we settled on the gabapentin. I saw a new neurologist last winter, and one of my questions was whether a newer drug like Lyrica might be better. He said he usually starts with the Gabepentin because it is inexpensive, safe, and effective. Then if that doesn't work, he might try Lyrica, an anti-depressant, or another drug. Anti-depressants don't heal the nerves, but they affect how the brain perceives the pain. Maybe you and your doctor could try some drugs in the gabapentin/Lyrica family to see if one works better for you than what you are taking now. You might also ask about varying the dosage to get the best effect for you. Although some people recover completely from Taxol-induced neuropathy, I am not one of them. I have learned to tune out the pain during the day and the gabapentin helps me sleep at night. I have also learned to be extremely careful walking on uneven terrain to avoid falls. I wish there were some magic solution for you. I am glad that you have seen some gradual improvement, and I hope it continues. Reply
8/ 7/12 4:25pm

Thank you, Phyllis.  I did try antidepressants - one made me too sleepy to function (amitryptaline) and the other one kept me awake all night (Celexa) - so I'm not using those now.  Lyrica helps some, so I'll stay on it.  Ibuprofen doesn't really help, but I've continued it anyway.  The bunch of suppplements may or may not help - I might let them run out.  (I'm interested in input from others out there who have supplements they swear by.)  Phyllis, how do you tune out the paon??

Mary

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Phyllis Johnson, Health Guide
8/ 8/12 8:23pm
Pain tells our brain that there is a problem we need to take care of--pull our fingers out of the fire, get off that broken ankle, etc. With neuropathy, the nerves are sending an inaccurate message. The pain is not a signal to stop walking. It is useless information, so we can retrain our body to ignore it. I have been using the breathing and visualization techniques I learned in LaMaze classes 35 years ago for childbirth for all kinds of other painful situations. Basically, I just try to think about something pleasant when I hurt. (Actually, I hurt all the time. At any gven moment my hands and feet tingle sort of like they are asleep, but sometimes the pain is worse than others.) I try to find something that will fully engage my mind like a good book or movie. Of course, it doesn't always work. Sometimes I will get a stab of pain that makes me gasp or wince, and the people I am with will ask me if I am OK. But generally during the day, I ignore the pain. When it is more intense, I start deep breathing LaMaze style. Trying to sleep is a different problem, because there is less to distract me. My neuropathy may be less severe than what some people experience. There isn't really any way to know what kind of pain someone else is in, so it might be if I had a more severe form, I wouldn't be able to tune it out. People at a pain clinic could probably teach you some relaxation and visualization techniques to try. You would have nothing to lose because these techniques have no harmful side effects, and they might reduce your pain. The supplements I see mentioned most often for neuropathy are the B vitamins. Of course, it is important to always check with the doctor about all supplements because each person's medical history is unique. Reply
8/10/12 3:11pm

I really appreciate your input, Phyllis.  I hoped this might go away, but it seems I have to live with it, so I'm trying to learn how.  Distraction does help, but as you know, you can't be engaged in an engrossing story all the time.  Some of my worst pain is at work when I'm more or less engaged, but not always in a positive way!  At times I have used the type of breathing taught in meditation classes.  It's not a distraction, but it can help me calm down when I feel espcially anxious about a life of pain.  Any experience or thoughts about TENs units?  I've heard it can "confuse" your nerves and make them stop sending pain signals but haven't tried it.  

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Phyllis Johnson, Health Guide
8/10/12 5:02pm
I have a friend who has used a Tens unit for back pain and likes hers, but I have no personal experience with one. I do not know how well they work for neuropathic pain, but it is worth exploring. You are probably already monitoring this, but if your worst pain is at work, there may be a trigger in how you are sitting or standing. After three years, you may yet see some additional improvement, but I think you probably are at the point of finding coping strategies, rather than cures. I wish you well as you try different ideas. Reply
9/ 6/12 12:20am

Thank you, Phyllis.  I'll keep hoping - have to believe it can still get better.  I appreciate your counsel.

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Phyllis Johnson, Health Guide
9/ 6/12 6:29am

I mentioned that some anti-depressants help neuropathy pain.  A new study has looked at Cymbalta specifically for chemo-induced neuropathy, so that might be another option.

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12/19/12 6:53pm

I'm trying Cymbalta now - thanks for your input.  My new health plan doesn't have good coverage for Lyrica, so I've switched to gabapentin.  It doesn't seem as effective, but I'll give it 3 months.  The hope involved in trying new things is important.

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Phyllis Johnson, Health Guide
12/19/12 7:29pm

I think you need to give most new drugs a while before you know how effective they are.  Depending on the dosage your doctor started you on, your doctor maight also be able to adjust your dosage to give you the best combination of pain relief without troublesome side effects.  As you point out, one big advantage of Gabapentin is the low cost.  Thanks for checking back in with us.  I hope the Cymbalta/Gabapentin combo makes a difference for you.

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By Mary Ann— Last Modified: 12/19/12, First Published: 08/05/12