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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Oct 28 4:54pm | Replies (3050)Comment receiving replies
I have been dealing with small tissue PN for close to 17 years. I started with the simple feeling that an elephant had stepped on my toes leaving them numb. Frankincense Oil massages of my feet at night was all I needed. Then as it worsened I was put on gabapentin and duloxetine. I have suffered from back problems for years and following a fusion 3 years ago I found the neuropathy was really affecting my balance. I fell two years ago and broke both legs and required surgery for repair. By then walking was a real issue but I managed with a Rollinator. In January of this year I was diagnosed with covid and ended up with kidney problems and surgery for a sudden gastric ulcer. After a four week hospital stay I am home but can barely walk with a cane or walker. I have an electric small device called a Zinger which I use to move around the complex in which I live. I am now taking 1200 mg of Gabapentin, 90 mg of duloxetine, Vitamin B 6 and nightly ice packs and foot and leg massage. At the suggestion of many I have tried medical marijuana and while it helps it leaves me "hungover." Yesterday I took nearly 30 mg for pain and I finally was able to sleep but today I am exhausted. I have taken opioids but they also cause the next day hangover. I have used TENS machines, had acupuncture (helped for short time), and heavy duty electrical impulses at a Clinic. None helped longer than a few hours. Any new ideas or therapies I might try? I am really having a hard time. I turned 80 a few months ago and truly feel like my life is over.
Replies to "I have been dealing with small tissue PN for close to 17 years. I started with..."
Hello @nanella, I would like to add my welcome to Connect along with @jillchristline and others. Sorry you haven't found much relief for your neuropathy. It sounds like you have tried a few different treatments. I thought I would share a list of complementary and alternative treatments from the Foundation for Peripheral Neuropathy in case you haven't seen them already - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.
You mentioned you are taking B6 as one of your supplements. I shied away from taking any B6 because too much can make your neuropathy worse unless you are deficient in B6. There are quite a few other discussions on B6 if you want to read more - https://connect.mayoclinic.org/search/?search=B6.
Have you had your blood tested for your vitamin B levels?
I empathize with all that you have undergone. I see a pattern like the "domino's affect" with one thing provoking the next in a long series of events that have weakened your legs' ability to stand and hold your own body weight. Neuropathy does affect balance. And breaking both legs must have been heartbreaking. Such a setback. My chiropractor has this flat machine that vibrates and I love the way my legs and feet feel afterward. I'm sending a link for foot vibrators for you to review. I hope your legs improve and that life has meaning and that you can return to doing the things that make you smile. God bless you. Linda from NY https://www.health.com/best-foot-massagers-6755236
Hi Nanella, Honey, your life isn't over! It just stinks really bad right now...right? BIG BIG HUG!!
I just turned 84 (YAY Eighty Ladies!!!) and I also have constant, painful, exhausting, horrible, damn PN! But.,,and this is a big but,,, I decided I have IT...IT doesn't have me and so I make the very best of each day that I can. I know now that, for me...this pain is not going away. This pain is something I will need to live with. I need to put up with it...I need to deal with, because it's not going anywhere. I know that now, after years of searching for ways to stop it...to make it" go away". There are some things that take the edge off for a while: vigorous massage machines, tight compression wraps are a few.
I look each day for what little things make me happy, laugh, think, wonder, listen to, learn, create, help, to get through my days WHILE my PN is doing it's thing. I have Books on Tape...all kinds of topics! I call another couple of lonely seniors during the week through a county program. I watch silly cartoons or Youtube. I have a Master Class account (Christmas gift from my wonderful grandsons). I listen to the Classical or whatever radio station floats my boat at the time. I haul out my old photo albums and have a good laugh. I look up things on the internet. I also sleep when I can or have to. I have a good cry with a good friend once in a while when I need to do that too.
Find your "Things"
Good luck to you and lots of love 80's Lady
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HI Nanella ~
Sorry to hear about your struggles. I am taking 2700mg of Gabapentin, Cat's Claw, and marijuana. These together help me get along about 50 to 60% better than without. But, as you know, each person's PN is different.
I wish you the best in your wonderful 80's. I"m 61 so I hope I can make it that far!
Cheers,
Jill