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@elizm Hi there, I have been reading and posting almost exclusively in the neuropathy discussions for about 8 months and only just this morning did I read a post by @colleenyoung Colleen in which she gave someone the link to this discussion, which I was not aware of because it is placed under the cancer symptoms discussions rather than neuropathy. Seems like it would be helpful to have it in both places (Colleen 😉 just wondering if that is possible?), She no longer has a cancer issue so I haven't thought to look over here.
My wife Linda who is 73 has had debilitating post-chemo burning in her feet for 6 years, but becoming much worse in the spring of '19. I am her advocate for online stuff as she does not connect with anything that is computer technology related. I decided to start reading all of the posts in this discussion and after a few posts came across this one by you. I am intrigued by your mentions of all the things you have tried and that you are aware of. I have heard of many of them, Linda has tried some of them, but not all. The thing that jumped out at me that I have NOT heard of is PEA.
Now your post which I am replying to is from June '18 and I am wondering, are you still taking it and is it still effective for you?
Also, I have been hearing a lot of mentions by many people about myofascial release. Are you still doing that and has it been helping your PN symptoms do you think? I know Jennifer Hunter has tons of info about it but it has not been clear to me up to now whether it is that good for PN specifically.
I will leave it there for now. I easily find my self starting posts and writing mini novels but in this case I am, first and foremost, focused on wanting to get your take on these two things. Looking forward to hearing back and continuing to correspond. Best to you, Hank
Replies to "@elizm Hi there, I have been reading and posting almost exclusively in the neuropathy discussions for..."
@jesfactsmon, This discussion is in both the Cancer: Managing Symptoms group and the Neuropathy group to benefit members of each. If you look at the email notification, the associated groups are listed at the bottom, below the View & Reply button. I'm glad that you found it.
@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.
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By the way @elizm I realize that it would probably be best for me to read through ALL the posts in this discussion before asking you or anyone anything, because i know how the further one gets into a discussion the more questions (and answers) one will find. But Linda had SUCH a bad day and evening yesterday that I feel a little desperate to be able to tell her something new and hopeful today after she gets up. Thx.