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.
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.
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
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.
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 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.
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
My peripheral neuropathy is primarily on the left side of my body. My balance is one of the biggest issues, along with weakness/fatigue. When I am outside, I use trekking poles which really help my balance and confidence when walking, particularly on uneven terrain. I also exercise 5 days a week - cardio, strength and balance - I use online videos; there is quite a variety, even seated workouts.
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 was diagnosed with peripheral neuropathy 10 years ago when I started tripping over the half court line. I am not diabetic nor do I take any medicine. Balance remains my #1 problem besides using braces to walk. I am looking at an infected machine to buy. There are several types, any recommendations.
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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.
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1 ReactionHI 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
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2 ReactionsHello @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?
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4 ReactionsWhat neuropathy do you have?
They say peripheral, but they also thought maybe I fractured my neck, because they never heard of it starting in all appendages at the same time
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
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4 ReactionsMy peripheral neuropathy is primarily on the left side of my body. My balance is one of the biggest issues, along with weakness/fatigue. When I am outside, I use trekking poles which really help my balance and confidence when walking, particularly on uneven terrain. I also exercise 5 days a week - cardio, strength and balance - I use online videos; there is quite a variety, even seated workouts.
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2 ReactionsI live in Boca Raton Florida. Are there any organizations for me to join or explore. I have neuropathy in my legs, feet, and fingers.
Hi Debbie @debbiehirsch, The best organization I have found for learning more about neuropathy including treatments is the Foundation for Peripheral Neuropathy and Neuropathy Commons:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
If you like to watch videos instead of a lot of reading, the Foundation for Peripheral Neuropathy has a YouTube channel with a lot of webinar videos that have been helpful for me - https://www.youtube.com/@foundationforperipheralneu4122/videos.
For local support groups, the Foundation for Peripheral Neuropathy lists one in Jacksonville and one in Tampa - https://www.foundationforpn.org/support/support-groups/. You can also find a lot of support here on Connect. The Neuropathy Support Group lists many different discussions if you would like to explore more. Here's a list of the discussions - https://connect.mayoclinic.org/group/neuropathy/.
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1 ReactionI was diagnosed with peripheral neuropathy 10 years ago when I started tripping over the half court line. I am not diabetic nor do I take any medicine. Balance remains my #1 problem besides using braces to walk. I am looking at an infected machine to buy. There are several types, any recommendations.