Same here. Five years ago, diagnosed at Mayo in Rochester idiopathic axonal PN small and large fiber no cure, not a diabetic. You are right, all you can do is try to manage the symptoms and perhaps you nailed it with the words "stay active". That could be the key to help fight progression. Like some others, I am fortunate with no pain, mainly numbness and poor balance. Hopefully, someday, the medical community will figure this out. Ed
@antelibetta On the question of shoes, I must wear sneakers. I also have drop foot which started around 2019. I must wear ankle foot orthotics, mine are made by Ottobock. The "brace" fits into the sneaks and keeps my ankle at approximately a 90-degree angle, so my toes don't get caught which can make me trip forward. In my case, sneaks are the most comfortable.
I have idiopathic neuropathy also. My feet get numb, tingly, legs have muscle tremors and it extends into my privates. It calmed down for 5 months I was off 350mg lyrica a day now back on it as it returned with a vengeance..why? I gave up on neurologists
I have idiopathic neuropathy also. My feet get numb, tingly, legs have muscle tremors and it extends into my privates. It calmed down for 5 months I was off 350mg lyrica a day now back on it as it returned with a vengeance..why? I gave up on neurologists
Sorry to hear that it came back with a vengeance after being calmed down for almost half of a year. Not sure if you have seen the Foundation for Peripheral Neuropathy site but they have a lot of complementary and alternative treatments that might be worth looking into - https://www.foundationforpn.org/therapies/.
You mentioned being off of Lyrica for the 5 months you were doing better. Can you think of anything else that may have triggered the symptoms to return?
I've had 2 liver transplants over the past 25 years. I have been taking an immune surpressant, Prograf/Tacrolimus. After my 2nd transplant in 2017, I started having pain and numbness in my feet. A Neurologist in 2018 diagnosed it as SFN and I started taking Lyrica/Pregabalin for the pain. However, most of my pain is at night with burning or freezing feelings in addition to numbness. Affects how well I sleep a lot.
Same here. Five years ago, diagnosed at Mayo in Rochester idiopathic axonal PN small and large fiber no cure, not a diabetic. You are right, all you can do is try to manage the symptoms and perhaps you nailed it with the words "stay active". That could be the key to help fight progression. Like some others, I am fortunate with no pain, mainly numbness and poor balance. Hopefully, someday, the medical community will figure this out. Ed
Same here & activity has helped me immensely improve my balance & increasing my leg strength.
I’ve included a full body workout. My workout is Monday Wednesday & Friday. Off days i use my treadmill 45 to 50
Minutes. My Nordic treadmill has an IFIT app that has a trainer that controls speed & incline. You can pick different hikes. I’m presently hiking up out of the Grand Canyon.
So far my activities have improved my quality of life a great deal.
Sorry to hear that it came back with a vengeance after being calmed down for almost half of a year. Not sure if you have seen the Foundation for Peripheral Neuropathy site but they have a lot of complementary and alternative treatments that might be worth looking into - https://www.foundationforpn.org/therapies/.
You mentioned being off of Lyrica for the 5 months you were doing better. Can you think of anything else that may have triggered the symptoms to return?
John
Thank you I will look into the foundation.
I ester walked 30 lapse in Olympic size pool feet up, lateral and backwards. The next day I had an l3/4 spinal epidural because I have proximal hamstring tendinopathy so my orthopedic is ruking out spine from right glut pain. It started right after the injection
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Hi, what kind of shoes to U use?
@antelibetta On the question of shoes, I must wear sneakers. I also have drop foot which started around 2019. I must wear ankle foot orthotics, mine are made by Ottobock. The "brace" fits into the sneaks and keeps my ankle at approximately a 90-degree angle, so my toes don't get caught which can make me trip forward. In my case, sneaks are the most comfortable.
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2 ReactionsI have idiopathic neuropathy also. My feet get numb, tingly, legs have muscle tremors and it extends into my privates. It calmed down for 5 months I was off 350mg lyrica a day now back on it as it returned with a vengeance..why? I gave up on neurologists
Sorry to hear that it came back with a vengeance after being calmed down for almost half of a year. Not sure if you have seen the Foundation for Peripheral Neuropathy site but they have a lot of complementary and alternative treatments that might be worth looking into - https://www.foundationforpn.org/therapies/.
You mentioned being off of Lyrica for the 5 months you were doing better. Can you think of anything else that may have triggered the symptoms to return?
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Helpful -
Hug
1 ReactionI've had 2 liver transplants over the past 25 years. I have been taking an immune surpressant, Prograf/Tacrolimus. After my 2nd transplant in 2017, I started having pain and numbness in my feet. A Neurologist in 2018 diagnosed it as SFN and I started taking Lyrica/Pregabalin for the pain. However, most of my pain is at night with burning or freezing feelings in addition to numbness. Affects how well I sleep a lot.
Same here & activity has helped me immensely improve my balance & increasing my leg strength.
I’ve included a full body workout. My workout is Monday Wednesday & Friday. Off days i use my treadmill 45 to 50
Minutes. My Nordic treadmill has an IFIT app that has a trainer that controls speed & incline. You can pick different hikes. I’m presently hiking up out of the Grand Canyon.
So far my activities have improved my quality of life a great deal.
-
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Helpful -
Hug
1 ReactionJohn
Thank you I will look into the foundation.
I ester walked 30 lapse in Olympic size pool feet up, lateral and backwards. The next day I had an l3/4 spinal epidural because I have proximal hamstring tendinopathy so my orthopedic is ruking out spine from right glut pain. It started right after the injection
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Like -
Helpful -
Hug
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