Vent about Permanent Neuropathy

I forget, are we allowed to post links?

I was going to post some links about supplements that are good to treat neuropathy but I am guessing it is old news and nothing you guys aren't already familiar with.

I was dosing myself with all kinds of supplements a few years back to no avail and actually worried I was doing more harm than good. I ran everything by my MO and she had no problems but in doing further research after spending a small fortune I found that two supplements I was taking may actually be dangerous to BC patients. I forget the one supplement but it raised estrogen levels, and the second one is Benfotiamine plus thiamine. Apparently some studies says it reduces cancer cell proliferation but other studies say the opposite and that it promotes growth. Needless to say I got spooked, discouraged and threw out the damn six bottles. (So much for saving money by buying in bulk).

Anyway, I am back to getting serious about this infliction. I find myself getting very lonely and feeling isolated. I want to join the living but it is so hard to make new friends and pursue new interests and hobbies when my mobility is so limited. I want to try the vitamin and supplement route again. I would love to try one of these neuropathy products that has excellent reviews and they would actually save money over buying supplements individually but they all contain very high levels of the Benfotiamine so I am hesitant but very tempted. Thoughts? Apparently this thiamine is an important component in all these neuropathy products. 🤔

B-complex is a must. I also take magnesium oxide-- good for cramps. I have discovered that enjoying the things I can do and working from there is the best way to cope. I cannot run, but I can walk. So I walk my dog and get on the treadmill at the gym. Today I made spiced peaches-- this time with cinnamon, cloves, and star anise. Just the rhythm of filling the jars, putting on the lids, and putting the jars back in the kettle of hot water is fun, and it gets me up on my feet. Don't stay stuck grieving the losses-- branch out and explore the other things you can do. All those supplements cost extra money that you can enjoy spending elsewhere.

NotBroken - I forget - do you have pain or just 'dead' feet?

My neurologist re-emphasized last week that there are a number of things that can help with pain from neuropathy - prescription & other. There is nothing that will bring the nerves back. Any improvements happens in the first two-three years - and that's usually just "better" not back to "normal". I'm grateful I improved enough to zip & button my own levis. I've been taking B-6 and B-12 for 7 years. She wants to do blood tests on both since while some B-6 can be good, if it's too much it can make the neuropathy worse. She said there are no valid studies that acupuncture helps the numbness (except again - it might help if you have pain). She said the same for most supplements.

So I live with blocks of ice for feet and pretty much have to watch every step I take since I can't feel the ground. And the ends of my fingers don't have enough feeling to do small tasks - like changing batteries in hearing aids (which is why I haven't address the hearing problem).

Thanks MC Baker. Yes, rechargeable hearing aids are on my list to explore in the fall (or whenever this latest round of Covid becomes less acute). I can actually hear most everything quite well except some actors on stage (& I'm not going to play now anyway), and my son - who only comes to visit once every two years so & refuses to speak up. I haven't had a problem with any other people I'm around. Since I live alone - who cares how loud I play my music? Which probably caused the problem in the first place over the years since I never played soft music.

In addition to gabapentin, I’m taking vitamin D, B12 and magnesium oxide. Im under a neurologist care, so will get blood word every 6 months to check blood levels. I also have facial numbness and am taking different meds at night to help with that. I’m also been trying different essential oils, walking everyday, REIKI therapy and have just started acupuncture.

On the topic of hearing aids (maybe we need a new topic), I have had my Bluetooth enable hearing aids for 4 years and love them. It’s so nice to be able to hear conversations again. Love to listen to audiobooks too.

MCBaker - Hearing loss can be related to nerve issues. My hearing loss isheredity. I’d been working with an audiologist for several years before finally getting hearing aids. I’ll probably get to rechargeable ones once I need new ones, depending on cost. I’ve been dealing with D deficiency for quite a while as well. I guess wearing a hat while outside is good and bad.

Two more thoughts. McBaker and Minus, I have recently given up smoking though I still vape just a tiny bit. I understand that should help with the neuropathy since better circulation and oxygen exchange. Minus, I have tried and failed so many times in the past but often I would remember you telling me that when i am good and ready it will happen. You were so very right! It is exactly how it played with me.

A couple years ago I was diagnosed with an esophagus issue. The muscles of the esophagus are weakened so it takes several swallows for things to go down. The specialist said probably neuropathy related. I try not to think what other organs might be affected but because I am pre-diabetic it was decided that my sugar levels may be contributing to an already compromised body so I am taking metformin to keep my glucose levels on the low side.

So that's me. Prior to BC I considered myself in very good health. My only issue was my smoking. I remember by oncologist during my first consult put my health at "Fair". I confronted him and told him I was in very good health and he responded "but you have cancer". We compromised and he changed it to "Good". 👍 Today I am afraid I might fall into the "Poor" category.

BeanBean Have you been to a podiatrist? One helped me a lot. Diagnosing the cause, prescribing orthotics, etc. might help.

Really nice to see that you've had a good long time now past your treatment. I'm missing my swim exercise, which I did pre-covid. Deep-water, with resistance equipment. Not feeling very safe about going back to indoor spaces with other humans, but each part of the country is different on how successful Delta is right now.

There's a Fasting benefits thread. We recently discussed fasting for nerve pain. I'm not certain it helped with my sciatica, but I've been fasting for years. Only one little numb spot from sciatica and no neuropathy from chemo. Hope it helps.

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Aug 24, 2021 08:44AM PAKNC wrote:

Chiming in here - I fast 14 hours overnight, this is a habit that was easy for me to adopt because I'm a night owl and never hungry in the AM. As they say, the best diet is the one you stick to. I've been doing this for about six months now and it's pretty effortless for me. I made the change to deal with the pre diabetes that spiked when on Tamoxifen. I have also read Dr. Longo's books. I did a few longer fasts a year ago using Prolon, but did these to combat some terrible nerve pain from bad dental surgery. I felt like it helped me to turn the corner with the chronic pain but those 5-day fasting mimicking diets were not a walk in the park for me!

I am pleased to see more and more research pointing to relationships between insulin/metabolic health and breast cancer recurrence. I have read some studies indicating that the prolonged overnight fast can help reduce recurrence risk so I'm hoping I may address two issues at once - high blood sugar and recurrence risk.

Aug 24, 2021 02:31PM NorCalS wrote:

Here's a 2019 article that discusses the possibility that fasting may help with neurological issues:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC68361...

I broke an ankle and have torn ligaments. I too was prescribed Voltaren. I only use it at night because that is when my pain is the worst or maybe that is just when I am more aware of it but I too find it very helpful. I was using the CBD lotions which also were helpful but expensive. Did you notice the warning on Voltaren? Apparently not for long term use and also pulled off market in other countries due to potential risk?

I have used Voltaren for probably 15 years...I have never had any problems with it. Maybe some people simply use too much, but still I use a lot so who knows...I just know it works for me!!!!

I broke my knee (tibial plateau to be specific) around Thanksgiving time. When I need it Voltaren, I use it. Sometimes all it takes is a dab the size of a large Hershey's kiss. I ought to order another tube. Yesterday I got down on my knees and cleaned up my 3 ft x 3 ft mint garden. Most of my weight was on the other knee, and I used my arms mostly to make my way around. I am also now able to get upright from a kneeling position without excessive acrobatics. But yes, pain is amplified with nerve damage. Sigh!! And of course, with the injury that I had, further nerve damage is likely.

Hey not broken. Yes, the site is very frustrating. I think about you often. Are you still in your Mom's house? Have your boys grown up & moved on? I haven't even see my son's 'new' house yet since he moved the end of 2019 - just before Covid. Coincidentally I've wanted a smoke several times this week - but I KNOW I can't. Lots of annoying issues.

Great that you found Voltaren works. I haven't tried it but likely will. Let us know about the Nerve Support.

NB - agreed,this site is a nightmare. I'm not on as much & certainly no longer trying to navigate to help new members with their questions. Sigh - that was the whole point!!! We'll PM once it settles down later this summer.