Living with Neuropathy - Welcome to the group

There are many many people taking 150 mg of boron daily for osteoporosis. My osteoporosis is extremely serious (severe is -2.5 and my DEXA score was -5.7 - alarming). You know Ruth Bader Ginsburg ate a bag of prunes daily for her osteoporosis - but you can't get enough from prunes. I'm not willing to take a lot over the recommended upper limit, but truth be told, they do not really know much about boron and limits. It IS known that a lack of boron will cause osteoporosis. I am not worried about how much I am taking. Over 20 mg a day is when there are changes (increases) in the amount of estrogen in your body. I am not worried about estrogen. I couldn't believe it when all my arthritis symptoms disappeared when I took boron! But if you miss even one dose, it comes. back. While it may cure (or significantly help) osteoporosis, it is not a cure for arthritis. It does get rid of all the pain while you are taking it.

Yes monk fruit IS considered sugar. I do not eat any fruit except a few berries a day (6 or fewer). I do not eat vegetables high in sugar such as root vegetables, beans, peas, etc. It is VERY hard to avoid sugar - it is in everything - and there are over 187 names for it - so they sneak it into everything. Pick up a box of Morton's salt and look at the ingredients. Salt and dextrose - dextrose is sugar. They are adding sugar to milk these days and milk already has sugar in it. I have to be very very careful. One surprising source of a ton of sugar are condiments and rubs - look at your ketchup bottle! The only sweeteners I am allowed are Xylitol and Stevia. And those only a little at a time. I make a great chocolate pudding - you won't believe this - out of avocados! I use unsweetened chocolate powder. It tastes like chocolate mousse! The best way to go off sugar is cold turkey - all at once. Having that book The Candida Cure would be a real help because she outlines everything you need to know. The author, Ann Boroch, had MS and was in a wheelchair for 24 years. She cured herself. She knew she had candida overgrowth. She became a nutritionist and then became a naturopathic doctor. My stomach and esophagus were killing me for over three years. The pain was unbearable but the doctor I had at the time would never tell me what was going on. She was testing me for dementia - I was such a mess. I felt dizzy all the time, brain fog, couldn't stand to smell cigarettes or perfume, there were so many bad symptoms. But the pain in my gut - and I was having chest pains that were legion - so bad I had to pull over on the freeway a couple of times. That turned out to be candida overgrowth in may esophagaus - causing it to cramp up - which feels like a heart attack. I decided to kill myself - hand a handful of pills to do the deed. At the last minute, I decided to take one sleeping pill and see how I felt when I woke up. When I awoke, I KNEW it was candida overgrowth. A friend suggested that book - I downloaded it to my Kindle and headed to the grocery store to buy compliant foods. I cleaned out all my cupboards and refrigerator, and took all the food to a neighbor that had just had hip replacement and didn't bother to buy any food. That was April 2, 2015 - more than 5-½ years ago. Now, though I will be 70 at the end of December, I feel like I am in my 20s all the time! It is amazing what going off sugar has done for me. I sleep like a baby now. I am usually sharp as a tack (I had to take medication for migraine today - it's a long story - and is tied to Mitral Valve Prolapse getting worse - at any rate - the meds have me loopy as I usually don't take this stuff). I had metaplasia cells in my stomach - those are pre-cancerous. I also had polyps in my colon all the time. Those and the metaplasia cells are gone. When I went to the dental college, they made everybody stop what they were doing and come and look at my "perfect and healthy" mouth!! I even got rid of my toenail fungus. I have energy all the time. It is truly amazing. I didn't realize how much sugar I was getting. It is in a lot of medicine too. I get IVIG every two weeks, and I had to find an IVIG product that didn't have sugar! But if you think you will get off sugar gradually, you will keep craving it. The craving fir sugar usually stops in 14 days - if you just go off some sugar, you will continue to crave it on a daily basis. All baked goods have to go - unless you find something that has no wheat, sugar, etc. I have candida overgrowth because I must take steroids daily for adrenal insufficiency (I have hypopituitarism because of a pituitary tumor - it cannot be completely removed because it is on the optic nerve... so I have to take cortisol or I will go into a coma. Steroids, antibiotics, hormones and stress and some of the common causes of candida overgrowth. Basically, those drugs kill off all the bacteria in your body, and when that happens in your gut, the candida can overgrow when the good bacteria that usually lives in your gut is wiped out. We all have candida in our bodies, The key is to keep it in balance so it does not overgrow and become a problem. If you don't deal with candida overgrowth, it causes problems like MS, myasthenia gravis, erectile dysfunction, cancer, ALS, all sorts of things. Nothing good.

As for supplements and what they do - I have given this website out on Mayo Connect and they allowed it - check out http://www..consumerlab.com. It is a nonprofit group for consumers - it is a consumer watchdog group for supplements. They test supplements to be sure they are what they say they are, they have as many mg. as they claim, they do not have any impurities, they open up in the body (many of these things go right through your body without opening up). Additionally, they post hundreds if not thousands of peer-reviewed articles and the like so you can search and read all about whatever it is you are thinking of taking. There isn't much about boron there - boron is relatively obscure and little-understood. People have known it cures osteoporosis and treats arthritis and fibromyalgia for a long time, but where's the money in that? Also, many doctors do not know anything about nutrition. They know as much as the man on the corner, The more you learn, the better you can heal yourself. Food is medicine. I have had remarkable luck in pulling my body back from the brink of death into being relatively healthy (for me). I read about nutrition all the time. I'm reading Ph.D.-level nutrition books now! I find it fascinating. My doctors are in awe of me now,. They always tell me how proud of me they are. And one more thing: You get unbelievable respect from doctors when you tell them you don't eat sugar in any form. Sugar causes inflammation and it feeds candida, cancer, and lots of other terrible things. Inflammation leads to disease, So stopping inflammation is a very good idea. Your body will be so grateful. What about all my friends and family who initially thought the diet wouldn't last and I was crazy? They are all trying the diet now too! They can't believe their eyes when they see how healthy I've become. They thought for sure I was dying. So if you are having pain associated with fibromyalgia, arthritis, osteoporosis (which includes men), or if you are having ANY pain, I suggest try going off sugar. Just know you are going to be cranky for a couple of weeks - allow yourself extra time for everything and try to reduce your workload - and just go off the stuff. You will feel a little rough for about two weeks, then you will start feeling better. I highly recommend that book - The Candida Cure by Ann Boroch. If you don't have candida but think you'd like to go off sugar - she has a great guide for doing that and tells you everything to avoid. I did not do any of the organ cleanses she suggests - I think cleanses are too hard on the body. There are good recipes in the book and she has a cookbook with very good recipes in it. And if you are on Facebook, I can help anybody that wants to go off sugar by giving you membership in a private group for people doing the Ann Boroch diet. We have a library with recipes galore.

Hello @bluesman1, I would like to add my welcome to Connect along with @givinghope and others. I'm happy to see that @givinghope has already shared some things you might find helpful. There is also another discussion where members have shared their journey with neuropathy and what they've found that helps them that you might want to read.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

One of the things that I think has really helped me is learning as much as I can about neuropathy. I've made a few lifestyle changes also that I think have helped - eating healthier, eliminating processed foods and staying away from sugar and alcohol, exercise and the tough one for me - losing weight. The Foundation for Peripheral Neuropathy has some information you might find helpful on maintaining a healthy lifestyle here - https://www.foundationforpn.org/living-well/lifestyle/

What is your biggest challenge with neuropathy?

I also live in Newfoundland and have been suffering with small fiber neuropathy for 4 years..the meds I have tried just don't make any difference at all..go on the opioids is the next step I'm told...other than drugs I have had no help in managing this pain. I must admit I was going to go to a pain support group then Covid struck..I am very elderly and I cannot do the virtual thing. Especially for so many hours a day
.I fell in January and broke my ankle in two places
.I had surgery and am using a walking boot now..the neuropathy is making recovery so difficult two pains to deal with and the neuropathy is the worst. Difficult not to get depressed..it seems people don't want to hear about it anymore my house seems like a jail
I am glad I found this group and your wisdom John

I have suffered for 4-5 years with small fiber neuropathy I am elderly and hadn't planned living life like this no medications work.. sometimes I get the feeling the doctors can't help. I needed to reach out to people experiencing the same pain. I live in Newfoundland..a small beautiful place
My neighbor's are great also some very good friends..however isolation is getting to me as I fell January and broke my ankle in two places. A very slow recovery
Depression is difficult to keep at bay but I'm trying..the neuropathy is making physio so difficult. Thank you for this forum I am new but I look forward to your support
Thank you so much

Hello @herbertguy, Welcome to Connect. Breaking an ankle can be tough even if you don't have neuropathy. It sounds like the surgery went OK which is good but I know recovery can be the pits especially if you don't have any help. What helps me dull the symptoms is to keep my mind occupied with other thoughts, activities around the house or just enjoying looking out the window at my bird feeder. Here's a discussion I started a few years ago to share a few photos I took through the window in my computer room. It helped me during the Covid lockdown and through a couple of surgeries to keep my thinking on the positive side.
-- What's outside of your picture window today?
https://connect.mayoclinic.org/discussion/whats-outside-of-your-picture-window-today/
Do you have any hobbies or activities you enjoy that you are able to do at home to help keep your mind occupied?

Thank you so much for your reply..this is very new for me so bear with me please..I do have support with home care workers..they are pretty good..it just seems I have lost control of my life for now. I am an avid walker with my little Havsnese buddy... The irony of all this is the only relief I can hey from the severe burning and tingling is walking..having that removed from my life is a nightmare..if only I could get some sleep I will get through this
Because I am an old person they don't want to give me anything with enough punch to help me sleep a few hours..do you have any ideas? You are so knowledgeable. I play the piano listen to audio books..it's awful how pain can take over your life

Congratulations to you dear for being so strong

I also have most of my balance issues while turning. We have a 6' island in the kitchen that leads to the backyard or the living room. I use this island as a literal touchstone (ha!). No need to grip it or even hold on to it. Simply placing one finger on it gives me all the balance needed. Has anyone with PN figures out why turning is a common problem for us. I did take your recommendations and just ordered a lightweight, portable walker.
Thanks everyone!