Vent about Permanent Neuropathy

I did a search of my town and found a chiropractor who does it.

There is also low dose naltrexone that helps for pain and has many other benefits.

Please stop using a heating pad on your feet. Since you have neuropathy you will not recognize if it gets too hot and may suffer burns or impair circulation. Also use of prolonged heat or cold beyond 20 minutes causes "rebound" which intensifies pain, not relieve it. Use socks or just warm up that section of the bed prior to you going to bed. I am so sorry you are having this experience and hope you can find pain relief.

Exercise Guru - thanks for posting. How much Vit B12 do you take? I've been on 1000 mcg since before I started chemo at the recommendation of my MO. Good to know that accupuncture is helping.

Neuropathy is weird. I had extreme pain and dead feet along with numbness in my hands. This went on for 2 years post Carbo platinum. Then I met a dietician whole told me About B complex and B12 so I started taking the methylated shots weekly. (For supplement I like the twice daily Thorpe multivitamin but you only need one a day). This helped significantly. My dietician thinks I have the MTHFR receptor defect that causes deficiency in folate and B12. I haven't tested for it but maybe I had prenacious anemia because I felt loads better after the vitamin B shots.

Then with time some of the neuropathy died down. At year 3 my insurance changed and would cover acupuncture at the cancer center. I started acuncture and I I have done around 36 weeks of treatment in my hands and feet. I had umprovment after 10 to 12 weeks. They have told me that people who get in during treatment or right after have the best results. Still it has really helped especially with the feet.

Now at year 4 I started metformin because my fasting blood sugars never came down after chemo they stayed around 100. I had a 6.0 A1C. The numbers are not that high but evidently it matters. I was having a bit of blurry eyes and thought I might need to get glasses. That is also improving on metformin. So I am left to conclude that I had the perfect storm for neuropathy.

Now I have a slight numbness in my feet and dead foot at the end of the day. I go to acupuncture for boosts once a month.

The hands have improved immensely I also changed my diet and eat whole foods plant based with emphasis on lots of greens and broccoli sprouts. Can't say what that has done for the neuropathy but eliminated the awful menopause symptoms I used to get.

You can get the shots but don't. Make your doctor test you first because pernicious anemia is nothing to mess around with and if positive you will likely need shots for a long time if not for life.

Also I had a specialist tell. Me that 30 to 40.percent of muscle aches are often related to low vitamin D.

Not neuropathy but OMG my life and sleep improved making sure my B levels and D levels were good.

But sadly the day after I posted this I had this article come a cross my feed about vitam B6 and vitamin B12 increasing hip fractures

Vitamins B-6 and B-12 linked with increased risk of hip fracture

https://www.medicalnewstoday.com/articles/326640.php

Annie - my podiatrist recommended Hoka. They have a nice wide toe box and lots of cushion. I LOVE them and am on my third pair. I bought the original Hoka Mach, but there are several styles. I actually bought a "sedate" black pair that I wear to "formal" occasions. You can check them out on line and look for local stores that carry the brand.

I have long feet and can't stand the socks rubbing my toes either. I finally ended up buying men's socks to have the extra toe room.

Good summary marijen. Note - it does list radiation as one of the causes. Neuropathy, like lymphadema, isn't at the forefront of most docs expertise. I think it's important to have a work up by a neurologist - and preferably at a major medical center where they see more cases that are not diabetes driven.

I've tried at one time or I am still using most of the supplements listed. Fortunately I don't have the debilitating & excruciating pain that many do. I just have no feeling in my feet & impaired feeling in my fingers. So of course - not much balance. My neurologist was honest up front and said it might get "better" over two years, but better would not likely ever be back to normal. Most neurologists will flat out say there is no cure - and really nothing they can do except prescribe drugs to kill the pain. I did have some improvement over the first two years post treatment, but now that I'm 5 years out I don't expect any changes.

Need a laugh for the day? Imagine me with no balance trying to approximate the Yoga "tree" pose - even holding on to a chair with one hand and my lifted foot only at my ankle w/the toe still touching the ground.

I was glad to read ExerciseGuru talking about her acupuncture. Maybe something else to try.

marijen - sorry you're having such pain.

Oh my - is this the ubiquitous Claritin? I can't believe how many 'off label' applications Claritin seems to have. It got me though Neulasta bone pain for sure. Although they are not 'proven' treatment for systemic or chronic inflammation, they sure seem to work for a lot of different things.

Hi Annie60 - for me, shoes with v good support all along my foot and LOTS of cushioning are most comfortable. For support, I like Vionic, some are more supportive than others. For cushioning, Clark's CloudStepper line is great, as are the Skechers On the Go line or any Skechers that feel extra cushy and supportive. QVC and Amazon are good sources for these. My fave shoes are my Adidas Cloudform sneakers (I don't use the laces) plus my 6 yr old Merrill slides for around the house.

Lanne

I use a cream from a compounding pharmacy, with amitriptyline 2%, ketamine 5%, and lidocaine 5%. Prescribed for three times a day, but I only use it twice a day, because my insurance doesn't pay for it.

It seems like I get better one day and the next is awful. Saw the NP in the MO office yesterday before HP. She just uped my dosage of gabapentin. Two different doctors have said HP would not make the neuropathy worse but it always seems worse after a treatment. I have 4 more HP's . I can not wait to be done

Lanne - I will try the glucosamine and Tumeric. I am taking Alpha Lipoic Acid as suggested by my PCP. Not seeing any results as of yet.

Annie

Oh Tang&Chris, so sorry to hear about your progression. I too am in Texas and my feet are always cold. I wear socks when it's 98 degrees. And gloves when I'm reading the newspaper - or sometimes to bed.

I've found that magnesium helps with pains in my shins & calves - 250 or 500mg/day. I agree about the walking. Usually I participate in Silver Sneakers classes & chair yoga. Well none of those are options now so I've been walking every day. Now my feet hurt too.

I resisted gabapentin or Lyrica when I last saw the neurologist because my feet were mostly "dead" at the time. She said there really isn't a cure, only meds to mitigate pain. If my fingers start tingling more I'll be knocking on her door again. Maybe your doc could switch you to Lyrica? Sorry I'm not more help. Please let us know what happens.

The thing that was best for me was the Chair Yoga class at Memorial hospital. Just the breathing & the meditation made a big difference. I hope that will start back up eventually.

I have a prescription topical cream that is compounded, so insurance does not cover it. It is very effective. I have been walking 6000 steps a day, and my feet are feeling it. I also have severe arthritis in my left foot, and of course surgery is not an option at this time. Hoping that the gym re-opens as soon as it is safe. Some people are taking a challenge to Governor Evers "safer at home order" to court. Wisconsin has wide expanses of country, with urban areas concentrated on the east coast. I think that it is time to target hotspots, while opening up the rural, with selectively imposed travel bans inter-county. But what do I know? Other than I want to get back to the gym.

I had my appointment and am going to start back on gabapentin and a stronger NSAID. she also prescribed steroids but I'm not sure i will take it.

It's been a rough day physically and emotionally. I feel sad that I'm still struggling with issues from breast cancer. I'm 46 and feel much older.

Thanka for listening.