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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)
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@elizm

@jesfactsmon
Hi, Hank. I, too, have chemo-induced peripheral neuropathy. I note from your post that Linda is taking R-Lipoic Acid (the more bioavailable form of Alpha Lipoic Acid). Recently, Mayo did a webinair for those of us with CIPN and the director of palliative care (and an oncologist) at Johns Hopkins noted that Lipoic Acid likely makes CIPN worse. It also was mentioned that some people found relief from Scrambler Therapy. I personally did not and it likely was because my treatments were handed off from the physiatrist to her assistant/receptionist. (There is no way to anticipate this practice, but apparently a busy physiatrist has no time for such things, even for very expensive procedures which are not reimbursed by insurance...*sigh*) Some people also find relief with acupuncture. Again, I did not.

You may want to check out the recording of the webinair (if possible) at
https://register.gotowebinar.com/recording/viewRecording/5174813403335669772/4656725724123053839/
Like Linda, the cold is my friend. As I am unable to take the usual meds for peripheral neuropathy, I then turned to Chinese medicine. My acupuncturist gave me a wonderful herbal pill, traditionally given to post-menopausal women to prevent hot flashes. It was wonderful for the CIPN but later was found to be raising my red blood cell count so I discontinued it.

Next, following a lot of research, I came across Palmitoylethanolamide which, at the time (2018) was being used by some neurologists in Europe for CIPN. It now is easily available on Amazon as it is being more widely accepted by American neurologists (especially for those of us who are sensitive to pharmceuticals). It's an endogenous (natural to the body) fatty acid amide with no side effects or drug interactions. It does nothing for the numbness and loss of balance, but it has overcome the pain and burning for my feet, legs and hands. I take three 400mg capsules throughout the day (1,200mg total) which allows me to go shopping, visit friends, drive, do housework, etc. As Linda probably has noted to you, every month or two, the CIPN gets worse for a few days. At those times, I take a capsule or two more during the day until the phase passes.

I send my best to Linda and you.

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Replies to "@jesfactsmon Hi, Hank. I, too, have chemo-induced peripheral neuropathy. I note from your post that Linda..."
Hank | @jesfactsmon | Dec 7, 2020

@elizm
Hi, yes, I had read a VERY interesting post by you from May 31st of this year. After reading that I wrote to you on 9/4 in the Chemo-related Neuropathy discussion regarding PEA. Based on that conversation Linda did start taking PEA and is still taking it now (I believe she is taking 1200 mg per day as well). She did not notice any benefit to her pain level for the first month. In early October she started a product called Theracurmin that is supposed to be amazing for inflammation according to @jeba . Lately she is noticing some seemingly significant pain relief. So now we are in that classic situation whereby you start multiple things and you have to ask "is it the PEA or the Theracurmin?" I don't know but I am happy for any benefit. I think she will continue both as long as this welcome change continues.

Interesting that you stopped the chinese herb. You had discussed Zhi Bai Di Huang Wan in your 5/31 post as well and I have that tucked away for possible future experimentation. You say it raised your blood cell count. What are the negative effects of a raised red blood cell count (pleading ignorance)?

Thanks for your post, I always find what you have to say very compelling. Best, Hank

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