Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
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.
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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.
Liked by John, Volunteer Mentor, Kanaaz Pereira, Connect Moderator, phoenix0509
@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
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Thanks Lori, it seems like we are on a never ending Merry-go-round of pursuing one seemingly promising "solution" after the next. We are currently onto this Facebook group's Protocol of supplements, waiting for them to release their all-in-one package of all the required pills which have supposedly helped some people. One thing Linda won't do, and I am behind her 100% is drugs. The only drug she has tried so far for PN is gabapentin and that did not help, while giving her some unpleasant side effects like dizziness, foggy brain and others. She did not like the kratom I got for her and still has most of it. I can't find the link to who I ordered it from. Will keep your suggestion of Happyhippoherbals for the next time the Merry-go-round brings us back to kratom though as I find its always good to keep doors open and never close one 'cause you never know, someday something you thought never would might end up being the answer. Thanks again. Hank
Hank, I can't tell you the money I have wasted on supposed relief from Neuropathy. But I continue to try things as I hear about them, for living with daily severe pain is hard work! You said you won't use drugs, but I am not sure what that entails. I went to my first medical marijuana dispensary today, and I do know that marijuana helps distance or take away pain. However, I do not enjoy the "high" feelings of being high, just to get rid of pain. I totally would understand if marijuana would not work for you. It is not something I am too nuts about having to use. But sometimes, the pain is too much! We are all searching here! Good luck in finding things to help the Neuropathy battle! Lori R.
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@jesfactsmon and @lorirenee1, Good evening. I have read your current posts. My heart just hurts for anyone beginning the Neuropathy journey and so I decided to jump in and convey that message for your wife Hank. I too raised the "NO WAY" flag for drugs that I would call dangerous.
The one place I have found relief is medical cannabis. I have spent several years reaching out to fellow users and dispensary team members. The industry is growing rapidly. With legalization will come money for research and laws that enforce product regulation.
In the meantime, I want to let you know that you do not have to get "high" on medical cannabis. You self prescribe and then evaluate the results. At this point, my pain management program is only medical cannabis tinctures and topicals. I have both SFN (small fiber neuropathy) and chronic myofascial pain syndrome. Combined with weekly MFR treatments, I add daily yoga, mindfulness, and meditation. Mindfulness practitioners have much to teach us and I will be going to a retreat for valentine's day.
Fatigue, I have not conquered. Any suggestions? And please know that I am happy to share products and dosages that may support your personal form of integrative medicine. Be safe and protected. Chris
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Well actually @artscaping , we are positively disposed to the idea of medical marijuana. The drugs my wife will not do include all opioids, as well as things like duloxetine or steroids or pretty much anything that comes from a pharmaceutical company. We plan to definitely try marijuana as soon as it is legal in Tennessee. She has tried the illegal stuff enough to know it does effectively eliminate the pain for a few hours, so when the medical "no high" version becomes available it seems like that will be a useful tool for relief.
You asked about help with fatigue. One way that has helped my wife overcome fatigue is by taking a set of mitochondrial boosting supplements. As you may know, our energy is produced by the trillions of mitochondria that live in almost all cells of the body. They produce ATP, which is what we need to have energy. So anything we can do to make them healthier is a good thing. Here are the things she takes regularly: MitoQ, Niagen, Acetyl L Carnitine, L Carnosine, PQQ and NAC. The MitoQ is like a super Co Q10 because it crosses the blood-brain barrier and is much better absorbed. My wife is convinced it has helped as much as anything in fighting her ongoing energy issues and all of these combine to give her more energy to be able to endure pain and still function at a reasonable level. I would say of the 6 things I mentioned, the first 3 (MitoQ, Niagen and Acetyl L Carnitine) are the ones that she has noticed a benefit from the most and the last 3 (L Carnosine, PQQ and NAC) it's tough to tell. But in reading about them all, they all relate to boosting mitochondria. If anyone knows of any I did not mention I'd like to hear about them. I myself noticed a boost from taking Acetyl L Carnitine. When I was doing my regular hikes in the mornings I noticed a definite fall off in energy a couple years back when I was about 65. Very soon after starting the ALC I became more like my previous self who could march up and down hills with verve and joy! It was wonderful. So I really can attest to the benefits of that supplement. Niagen gives me the abilty to focus. My wife takes it every day but I do only on days when I have to do a lot of driving or when I will be doing a lot of socializing with people. It's great for focus in doing either of those things. And as I said, the MtoQ has been helping my wife tremendously she feels (I do not take that). The downside to taking all of these is, of course, they are not cheap. We spend a lot on all of this stuff (we probably take about 25 or 30 different supplements regularly) . But since we can't travel at all with her health situation being what it is, we figure it's a wash between traveling expenses and supplement expenses. So that is one way my wife deals with fatigue.
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I take THC medical marijuana at night. It helps me to get to sleep and gives me some relief from my neuropathy. Thank you for the information about MtoQ. I never heard about that. I am paralyzed with a spinal cord stroke and have burning neuropathic pain 24/7. I need to try this.
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Should You Sign a Pain Treatment Agreement? https://www.webmd.com/pain-management/pain-management-pain-treatment-agreement
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@darlingtondoll I am very sorry to hear that you are paralyzed AND deal with severe PN as well. My heart goes out to you as well as all of the sufferers of PN whose stories I have red about on this blog. Although my wife does not always have it 24/7 (sometimes it's less than the 24 but it's always the 7) the days she does get it all day is very debilitating for her. That is why the mitochondrial things have helped her so much. As I understand it from my online research, the MitoQ functions similar to CoQ10 in that when the mitochondria expel waste products (called ROS -reactive oxygen species) MitoQ helps to dispose of the waste which makes the mitochondria healthier. One of the problems with mitochondria, like anything, is that they can become sick and die and we have less of them as a result the older we get. All of the supplements I mentioned have a separate function in helping to keep mitochondria healthy and prolific.
I am glad you at least have medical marijuana to rely on. My wife wants legalization in our state (Tennessee) asap! Marijuana has been so misunderstood and mischaracterized for so long it's pathetic. The dumbest thing many people have believed and continue to believe is that it is a gateway drug. I had plenty of experience in the 1970s using it myself to understand that it is NOT a gateway drug. Smoking marijuana does not make you want to use cocaine or heroin, etc. The fact that people still refuse to try to understand it even now is SUCH a disservice to people like you and my wife. Best wishes to you!
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@jesfactsmon Thank you for the interesting info about the mitrochondria! I have not been taking any supplements since my B12 levels went crazy several months ago (1180 if I remember correctly) and my doctor suggested I stop taking B supplements. I went online and have found a supplement that combines some of the supplements you mention, so will give it a try.
YES, legs and hands and feet. DIABETIC FOR 25 years on INSULIN and STATIN and a small BLOOD PRESSURE PILL…
Lately CHARLEY HORSES SO HORRIBLE I cannot take the pain. Used CALEB TREEZE ORGANIC stops leg and foot cramps
and it took away some of the pain. GOT Garapentin 300 mg to take at night. DOESN'T do a thing. Will see a NEUROLOGIST tomorrow and did call for an appointment. DIAGNOSIS already is DIABETIC NEUROPATHY in legs, hands and feet…left leg the worst. Heard it is progressive, and to walk and not let the legs go stiff. NIGHTTIME IS HORRIBLE…day just hurts…MargaretOB
I can even get the flowery tops and make cookies and brownies, etc. I wish that Florida would legalize it for everyone.
Have you tried other neuropathy meds? I've been through all the neuropathy meds that my pcp and neurologist knew, and I don't think my pain specialist has more than 1 or 2 meds left on his list, plus I had a spinal cord stimulator implant in June of 2017, which has made a big difference in my pain level.
My pn hasn't progressed as far as yours, and I'm truly sorry that you're in so much pain. The pain in my feet seems bad to me, but I feel like a weakling compared to how much you and many others suffer with. I have much more pain at night and when I put my feet up in the recliner. Having multiple health conditions can make diagnosis and treatment difficult for our doctors.
Lidocaine cream 5% numbs my feet enough to let me get to sleep, but it's certainly a temporary solution. Medicare turned down a refill of the prescription, so I found Uber Numb on Amazon for $16, instead of more than $150 for the prescription.
I have a blanket lifter on my bed so the sheets and blankets don't touch my feet, and I have a pillow for my feet. Little things like these can make a difference.
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@margaretob – Have you spoken to your doctor about the charley horses?!? I just started taking Crestor and my doctor specifically warned me that extremely painful muscles was a potential serious side effect, and if it happened to stop taking the meds and make a medical appointment immediately. This side effect can happen at any time after you start taking the meds so does not necessarily show up when you first start taking it.
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