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DiscussionAnyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)Comment receiving replies
Replies to "I have read the Connect posts to this question posed by @rabbit10 from April 2016 to..."
@jesfactsmon Hi Hank, So sorry about you and your wife. So hard on both of you. I have severe peripheral neurapathy in my feet, with throbbing, burning, stabbing, contorting...on and on. Just to let you know, I have tried Scrambler therapy here in Illinois. It was 150.00 per treatment, for 10 treatments. Although it helped, it only did so for about 3 weeks. The second round of scrambler therapy barely helped at all. However, I know that people from all over the country come to this Illinois clinic, as the man who does it has good success. It is Spero Clinic of Illinois. There is only one Scrambler/Calmare therapy clinic in Illinois, and he is the one. As far as Kratom, go to Happyhippoherbals.com and try their Slow Strain Kratom. It does work for pain, and is approved by the American Kratom Association. Kratom is not created equal, by any means. There are strains that do utterly nothing. But the slow strains of Kratom, from Happy Hippo, do work. Especially if they note it for body relief, or any reference to making the body feel better. They never claim that Kratom helps with pain, I think for legal reasons. I find Kratom to be the best pain reliever. Not the capsules. The disgusting, vile tasting powder. It is the real deal, and works. Just thought this might help you. This illness is just a bear. Has totally disabled me. Pisses me off terribly. Makes me terribly sad. Mine started right after breast cancer also, but I never had chemo. I only had radiation. Go figure. Anyway, best of luck...… Lori Renee
@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.
It is very nice to hear your input . You are obviously very dedicated to your wife to read through all those posts! Thank you for sharing your thoughts and her experiences with us. Welcome to you and many well wishes to Linda.
Rachel