Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
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Medical marijuana has given me an almost pain free life after years of doctors putting me on opioids. I get the CBD oil capsules which is NOT hallucinogenic at all. I take one each morning with breakfast. And I got a jar of the ointment to massage any ‘hot spots’ that occur. When I get that sharp pain in my leg or shoulder, I rub it in and the pain is gone in 10 minutes.
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Which brand of cream do you use?
@kimgibson1 Hi again Kim, I replied to question in the other discussion you just posted as well. I am not sure whether there is a specific discussion on Connect about cbd oil specifically, but one thing you could do is put just "cbd" into the search box (top of page, click little hourglass icon) and you will find a myriad of posts (I just looked, there's a lot!), some of which will most certainly talk about cdb oil. I'm not sure how to contact posters who have not posted in a while, such as the two people you have tried to reply to. Very likely they may not be paying much attention to this forum right now. Wishing you luck in your quest, Hank
I have had neuropathy from diabetes for years. I use the anodyne therapy shoe & pads but not sure that helps much anymore. It did in the early years.Also a foot circulator that massages the bottoms of my feet & can also heat up. That seems to help some. What I found that has helped the most & so far the neuropathy has only gone a little ways above my ankle. I use (Co. name order online:) Integrative Therapeutic THERACURMIN* HP. bioavailable cur cumin. My Dr. put me on this years ago & I take 2 in am & 2 in pm. It is the only turmeric/curcumin that has helped my neuropathy & I tried many other ones. No luck. Returned them. Also I use : STOP PAIN spray & roll on & it is the only one that helps my pain in my feet. If my feet are hurting badly at night & I can't get to sleep, I put this on, don't feel much but shortly pain subsides & I go to sleep. I have tried many other things…..Vick's, Bio-freeze, aspercreme etc. etc. When I told my neurologist/homeopathic doctor (same doctor) about it, she had never heard of it, immediately looked it up & said "Oh it has __??____in it. Good. That helps pain. Keep using it." I am so very blessed to have this Dr. who helps me with additional supplements for my diabetes, kidney (only have one & it has a stent in the artery, anemia, extensive cell bloodwork, & she gives me an injection of Sarapin. (from Pitcher plant) for my bad back. I tried pain management for 6 months. They couldn't help, saw excellent back doctor & he said my back was so bad with many different things wrong, the only answer was surgery. At this time, I could hardly walk & used a cane all the time. I saw a print- out in her office . Headline said SARAPIN FOR PAIN. I asked her if she thought it would help my bad back, after explaining all the problems & her reply was…." It's homeopathic, no side effects, insurance will pay for it & I believe it will help. IT DID INDEED!!!!! I only use a cane if walking a really long distance. I have no pain & can lift up the bag of 20 lb. bird seed, carefully, with no problems. If it flares up with sciatica pain, I get extra shots & it helps or goes away. I thank God above every day for this doctor, that I found her, & that she gives sarapin injections to me, once a month in my lower back. Sarapin has been a MIRACLE for me & so has the products for my neuropathy. I do notice something different with my neuropathy. They say if you have it, you can't feel if you step on something or cut your foot. My feet are extremely sensitive & if I step on a tiny pebble, it hurts & feels like a huge rock. I also many years ago had the electronic tests for numbness in feet & it definitely is neuropathy. So far, hands & arms seem fairly good. God bless & I hope this helps.
PS: I have told others about sarapin & their doctors reply was: " It doesn't help or only helps a little. " To that I reply: B.S. It's a miracle for me & well worth trying for back pain & perhaps any pain. I didn't ask that!! But give it a try.
Liked by John, Volunteer Mentor, lioness, Hank
Welcome to Mayo Connect, and thank-you for all of your suggestions based on your personal experience. I am a caregiver for my wife who has peripheral neuropathy (PN) in her feet also, also mostly up to her ankles and only occasionally higher but not usually.
Your suggestions are very interesting. I will put Theracurmin on my list of things to explore further. Also the STOP PAIN spray sounds interesting as well. Worth taking for a test drive. Finally, the sarapin for back pain should be something some people here will probably want to try out.
Great you found a doctor you love, that is GOLDEN. Don't let her get away! You really seem to be something of a success story compared to many other PN sufferers. The fact that you are not only coping but thriving (or so it sounds) is amazing. Great that your walking has improved and your need for a cane has reduced. So I assume you have your diabetes under control, correct? Any other health issues besides that, the PN and the back/sciatic issue?
I hope you will share more of your great ideas here and i also hope you will partake of the deep knowledge base available here from so many (sadly) very experienced pain sufferers. I have learned a tremendous amount on Connect including some unique suggestions (like yours) for my wife to try that I otherwise would never have heard about. Plus, there is great support to be found here from wonderful quality people. Look forward to hearing more from you!
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Just ordered the Theracurmin that you mentioned. It sounds pretty good. The price is pretty high though. It says on the bottle directions that you can take 2 caps/day for seven days then cut back to one a day. Is that what you do? Thanks, Hank
Liked by Erika, Connect Moderator
Hello @jeba, I would like to add my welcome to Connect along with @jesfactsmon and other members. Thank you for sharing your experience and what helps you. The Theracurmin HP sounds helpful for inflammation and joint health. I take a liquid turmeric supplement more for keeping my PMR at bay and helping with joint inflammation. I've tried various capsules but they didn't seem to work as well for me. There is a recent study (March 2020) about bioavailability that supports the Theracurmin HP at least compared to other capsule forms.
Highly Bioavailable Forms of Curcumin and Promising Avenues for Curcumin-Based Research and Application: A Review:
I may have to give it a try. Thank you!
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Hello and a big huge welcome to the group @jeba!! I know you will find a great deal of support, encouragement, inspiration and information here. Warmest regards, Sunnyflower 😊. @jesfactsmon
I take 2 of the curcumin in a.m. & 2 in p.m. as per Dr. orders. And I think of myself in good health but if I list everything I have had, all the surgeries I’ve had etc It sounds pretty bad. I still have my tonsils but gall bladder, appendix (7 yrs later), hysterectomy, right kidney removal in 1997 (encapsulated cancer, so removed all of right kidney), had a stroke several yrs ago, have high BP, diabetes; bad back, bladder repair (yrs ago,) etc. But I control my diabetes, still, with just medication daily. Had to have that increased 2 yrs ago. So I feel like I’m in good health as long as I don’t think about my problems & I can keep moving & caring for my house, gardening, cooking my meals, trimming my dead roses daily (don’t like seeing roses dying & falling apart), cut my flowers & roses & bring them in to enjoy inside every couple of days, use my pool, feed my hummingbirds, squirrels & regular birds & just keep plugging along & thanking God daily for giving me life still & letting me be here to enjoy my family…..1 daughter, 3 sons from 52-63, grandkids (8) from 13 to 33, 5 great grandkids….7,5,3, 1 1/2, & 5 months! I feel truly blessed & I live with my best buddy…..my adopted dog, Sadie, who is 14 now & so far in great shape! She’s a medium size dog & probably part bijon, & maybe part havanese. She’s white with a tiny bit of beige & super soft, non allergic fur. I stay up too late watching Netflix (12:30-2:30am) & usually sleep till 10:30am. You can guess I’m retired. That’s my story!!😃😃
Sorry I’m so long winded!!!
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The Theracurcumin is pricey but as I said “It’s the only one that has ever helped me.” I tried several. I hope it helps your wife too. Also I paid attention last night when I went to bed. My PN was hurting a lot so I used the Stop Pain roll on & in a few minutes it eased off & asleep I went! Stop Pain comes in spray & roll on. I like roll on as I can be more direct rolling it on than spraying. Walmart has best price on it.
Well aren't you just a veritable wealth of information! All very useful. Have ordered the Theracurmin as I said before, and Linda (my better half) asked me yesterday whether I'd ordered the Stop Pain yet (she's SO impatient!), so we love that you posted this. Linda has been using Pentrex (roll on) for about 6 months and has appreciated some pain relief (~30%) before bedtime. But she always loves to try something new.
I am happy to hear about your full life and your extensive progeny. Wow, so many kids, grandkids and g.grandkids. So in about 13 years you might have your first g.g.grandkid, eh? You are something! So happy to hear such a great story from someone who was dealt a life of many health problems. Please stay with us here, we need you! Best, Hank
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@jeba Thanks so much for your neuropathy suggestions and for sharing so much about an interesting, happy life! I loved reading it! Lori Renee
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I have read the Connect posts to this question posed by @rabbit10 from April 2016 to Sept 2018 (the point where I am now) and I have to say my heart goes out to all you pain sufferers. PN is a horrible affliction. And so many try drugs and are disappointed (except a very few). My wife Linda has had PN since her chemo in 2014. I have been her caregiver since then. It happened just after the 2nd round and at that point she decided to quit chemo. After 4 occurences of breast cancer and surgeries for same over 3 years (2012-2015) she finally arrested it herself by taking Haelan951 (easily fouund online, it is a miracle for cancer of all kinds). She has since had no new outbreaks for over 4 years, to the surprise of her favorite Vanderbilt cancer surgeon.
Anyway, the neuropathy is now her biggest issue. She gets burning feet every day. Periodically she also gets a deep, insanely intense deep itch. She has found significant relief from the itch using a Sonicare electric toothbrush, the vibrations from which get down deep to that itch. But we think that the itch issue may be more from fibromyalgia and perhaps not neuropathy, but who knows and anyway its all nerve-related, right? For the burning she uses a fan blowing on her feet and she must keep the air conditioning at 66 degrees in the summer or she suffers (she loves winter now). She maintains a clean diet and takes a lot of supplements, including a lot of the ones everyone recommends for PN (R Lipoic, Benfo Thiamine, Acetyl L Carnitine, Omega 7 and at least 2 dozen more). She does not excercise much though she knows she should. She just doesn't have any energy most of the time. In doing research online there are a couple things I have found that sounded promising but which we have not been able to try. One is tetradotoxin, which is a substance taken from a pufferfish and is showing promise in relieving PN for up to 10 or 12 weeks at a time. Last I heard it was in phase 3 trials. I communicated with someone working on the study who said it could be years before final FDA approval, but it does sound promising. Search tertrodotoxin for peripheral neuropathy to see links referring to this. Here is one by the company developing it:
Another thing I came across at one point was Calmere Scramble therapy. It is a device, developed in Italy, that seems to arrest or reduce PN pain after a 2 week treatment regimen. The problem with it is that the device costs over $100 thousand dollars. There are a few medical facilities that have the device and offer this treatment around the country (we don't live near any of them) but I found one place in W. Hartford, Ct. that say they will do it for around $5000 but you would also have the cost of staying there for 2-3 weeks. And if it lasts 10-12 weeks it means you would need to return for further treatments. But apparently some people have sworn it has helped them. Here is a link:
Another thing we got for Linda is an Infrared light, well two different ones, actually. She used them on her feet for a couple months but stopped after she upped her sessions from 15 minutes to 20 minutes and felt she was getting burned. So this has not turned out to be too promising as yet.
Linda would like to try medical marijauna but it is illegal in Tennessee right now. Hopefully that will change soon. She has tried cbd oil and has also tried kratom, but has not been helped by either.
After reading through the first 68 pages of this website, one thing that sounds promising to us is Bob Diamond's protocol on Facebook which @johnbishop has mentioned. My wife wants to try this out soon. The only thing that worries Linda is the high (1200mg/day) dose of r-lipoic in the protocol. She has trouble tolerating the 240mg Life Extension pill she takes now, as it makes her nauseous. But she is going to give it a try anyway. She is so ready (as am I) for her to be able to have her life back. She is unable to travel to see my 98 year old mother whom she loves because of this ridiculous problem. She wants to be able to get out and do things again. She knows she is better off than many who suffer from PN but it's not any fun for anyone. If I find out anything new in my own research of PN I will let you all know about it. Best wishes to everyone.
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
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.
Liked by avmcbellar, Hank
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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You may recall that, regarding the PEA, it took at least a month for me to acquire its effects. (I am suggesting that you may have begun the Theracurmin too soon?) In addition, as I am very sensitive to pharmaceuticals and supplements, it may be that I need less PEA than Linda does. She may want to take a bit more than me, up to 2,000mg/day, but not more, and not in combination with the Theracurmin if you are ever going to figure out what works better for her.
Did you check the drug interactions of Theracurmin with what Linda is currently taking? There appear to be many.
In any event, as to the Chinese herbs. I have always had a high red blood cell count, and taking the herbs moved it above the normal range, risking blood clots. This was of concern to my oncologist which is why I discontinued it.
Boy, a lot for me to chew on here. You are obviously right about overlapping the two things, I flail sometimes when I become desperate to stop Linda's pain. Will give your inputs some thought and thank-you very much. Hank
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