Best department to get help for Chemo-related Neuropathy?

@jesfactsmon
Hi, Hank
I'm guessing that the reason there are two different discussions going on it that chemo-induced peripheral neuropathy (CIPN) is somewhat different from diabetic PN and idiopathic PN. In most cases, CIPN goes away after a year or two. In something like 20% of cases (like Linda's and mine) it doesn't.

With CIPN, most cases are diagnosed as the small fiber kind and neurologists prescribe drugs which have a number of adverse side effects (including having to take increased amounts over time to reach efficacy) and which are very difficult to withdraw from. Age plays a factor in all this... most studies do not look at how people over 65 react to these drugs (including the toxic effects of chemo), and it is my opinion, for what that's worth, that those of us in our 70s over-react to most drugs.

As you noted, I tried a number of these drugs at half-strength which left me totally unable to drive, so I had to find a different solution. Palmitoylethanolamide (PEA) was recommended by a number of European neurologists, so I gave it a try, beginning in October of 2018, and, after about a month, it worked for me. I've been using it daily ever since. I currently take 1,600 mg/a day (four 400mg doses spread over the day). On particularly bad days, I may take an extra dose. If my feet flare before bed or during the night, I smear Topricin FIBRO Cream on them and that calms them in about 10 minutes. I purchase both products on Amazon.

I did have a number of myofascial release treatments in the past. They were helpful (and expensive) for issues with my hips (the issues likely were not related to the neuropathy) and I have since learned a number of physical therapy exercises which I do every other day for that issue.

I continue to highly recommend the PEA which is natural and has no side effects nor drug interactions. It's what gets me through the day. Just don't get any which have additives (like B vitamins, etc.). Give my best wishes to Linda with whom I empathize. It's such a miserable condition with which to contend.

Thank-you @elizm it's always exciting to try something new, probably for me just as much as Linda. I mean, it really is so terrific when I am able to hit a home run with something that she gets a benefit from as it's so rare. She is pumped for trying this out. Thanks again. BTW, ever tried Penetrex? Linda has really had good luck with it reducing pain for her (she says about 20-30%) It has a homeopathic and may be similar to Topricin, which we have not gotten to so far. (Penetrex is on Amazon as well - tip: ONLY get the roll-on).

I am also trying to locate a good chinese medicine person in the Nashville area. A while back I saved the bookmark for one somewhere I thought, among the five thousand bookmarks I currently have. I'll find it hopefully. We are interested in the herb you mentioned.

I hope to run across more of your posts. You have a calming way of writing I think. Even my wife was impressed with you. Best to you for now, Hank

Thank-you @elizm it's always exciting to try something new, probably for me just as much as Linda. I mean, it really is so terrific when I am able to hit a home run with something that she gets a benefit from as it's so rare. She is pumped for trying this out. Thanks again. BTW, ever tried Penetrex? Linda has really had good luck with it reducing pain for her (she says about 20-30%) It has a homeopathic and may be similar to Topricin, which we have not gotten to so far. (Penetrex is on Amazon as well - tip: ONLY get the roll-on).

I am also trying to locate a good chinese medicine person in the Nashville area. A while back I saved the bookmark for one somewhere I thought, among the five thousand bookmarks I currently have. I'll find it hopefully. We are interested in the herb you mentioned.

I hope to run across more of your posts. You have a calming way of writing I think. Even my wife was impressed with you. Best to you for now, Hank

Hello You Beautiful People! I have 5% lidocaine patches that I use for my back, the 4% didn't quite work well enough and now even the 5% sometimes doesn't. I also have a 4% lidocaine solution that I apply with a Q-tip onto my knees which burn the most. I can't decide if I like the effects of that or not. It comes in a 3% cream but I chose the 4% even though it's a liquid but have found it easy to apply with a Q-tip.

The 5% patches for my back are extremely expensive so most of the time I just sit in a semi reclining position but that's hard to do at someone's house Or in a chair somewhere.

Has anybody had any experiences with these lidocaine options?

I wish for each one of you a very blessed day. Warmest regards, Sonny flower

Hello You Beautiful People! I have 5% lidocaine patches that I use for my back, the 4% didn't quite work well enough and now even the 5% sometimes doesn't. I also have a 4% lidocaine solution that I apply with a Q-tip onto my knees which burn the most. I can't decide if I like the effects of that or not. It comes in a 3% cream but I chose the 4% even though it's a liquid but have found it easy to apply with a Q-tip.

The 5% patches for my back are extremely expensive so most of the time I just sit in a semi reclining position but that's hard to do at someone's house Or in a chair somewhere.

Has anybody had any experiences with these lidocaine options?

I wish for each one of you a very blessed day. Warmest regards, Sonny flower

Hello You Beautiful People! I have 5% lidocaine patches that I use for my back, the 4% didn't quite work well enough and now even the 5% sometimes doesn't. I also have a 4% lidocaine solution that I apply with a Q-tip onto my knees which burn the most. I can't decide if I like the effects of that or not. It comes in a 3% cream but I chose the 4% even though it's a liquid but have found it easy to apply with a Q-tip.

The 5% patches for my back are extremely expensive so most of the time I just sit in a semi reclining position but that's hard to do at someone's house Or in a chair somewhere.

Has anybody had any experiences with these lidocaine options?

I wish for each one of you a very blessed day. Warmest regards, Sonny flower

@jesfactsmon
Hi, Hank
I'm guessing that the reason there are two different discussions going on it that chemo-induced peripheral neuropathy (CIPN) is somewhat different from diabetic PN and idiopathic PN. In most cases, CIPN goes away after a year or two. In something like 20% of cases (like Linda's and mine) it doesn't.

With CIPN, most cases are diagnosed as the small fiber kind and neurologists prescribe drugs which have a number of adverse side effects (including having to take increased amounts over time to reach efficacy) and which are very difficult to withdraw from. Age plays a factor in all this... most studies do not look at how people over 65 react to these drugs (including the toxic effects of chemo), and it is my opinion, for what that's worth, that those of us in our 70s over-react to most drugs.

As you noted, I tried a number of these drugs at half-strength which left me totally unable to drive, so I had to find a different solution. Palmitoylethanolamide (PEA) was recommended by a number of European neurologists, so I gave it a try, beginning in October of 2018, and, after about a month, it worked for me. I've been using it daily ever since. I currently take 1,600 mg/a day (four 400mg doses spread over the day). On particularly bad days, I may take an extra dose. If my feet flare before bed or during the night, I smear Topricin FIBRO Cream on them and that calms them in about 10 minutes. I purchase both products on Amazon.

I did have a number of myofascial release treatments in the past. They were helpful (and expensive) for issues with my hips (the issues likely were not related to the neuropathy) and I have since learned a number of physical therapy exercises which I do every other day for that issue.

I continue to highly recommend the PEA which is natural and has no side effects nor drug interactions. It's what gets me through the day. Just don't get any which have additives (like B vitamins, etc.). Give my best wishes to Linda with whom I empathize. It's such a miserable condition with which to contend.

Hi @sunnyflower I tried the 5% lidocaine patches on my feet and they made my feet burn differently than my regular Neuropathy burning. Sad to differentiate forms of burning, but I could. And, when the patches did not burn, they did not help either. Oy. Lori Renee

@jesfactsmon Hi Hank, Add PEA to the list of everything I have tried. Tried maximum doses of it for three months, and gave up. Did nothing for me at all. But maybe it will help Linda!!!! Everyone is so different. Many people do get pain relief from being on it, and there is really good research about it. Good luck Hank!!! You are one good husband!!! Lori Renee

@jesfactsmon
P.S. as to finding a good Chinese medicine practioner, have you consulted with Vanderbilt University Medical Center? It has taken a long-time for good regional medical centers to embrace Chinese medicine and practices, and they are still at the beginning of the learning curve. Vanderbilt might have some recommendations on who it has consulted with on the subject when introducing the subject to its physicians.