Diagnosed with Non Length-Dependent Small Fiber Neuropathy about 15 years ago. 66 years old now. No diabetes Always very fit. 6’3”, 185 lbs. Been thru all the treatments that I’ve ever heard of. No saliva. Ruined my teeth. Burning eyes, ears nose. Ringing ears. Stinging face, torso, back. Terrible pain in limbs. Starting to affect my muscles now. Stiffness. Weakness.
Lotsa fun! Anybody that can relate?
Diagnosed with Non Length-Dependent Small Fiber Neuropathy about 15 years ago. 66 years old now. No diabetes Always very fit. 6’3”, 185 lbs. Been thru all the treatments that I’ve ever heard of. No saliva. Ruined my teeth. Burning eyes, ears nose. Ringing ears. Stinging face, torso, back. Terrible pain in limbs. Starting to affect my muscles now. Stiffness. Weakness.
Lotsa fun! Anybody that can relate?
Welcome @jemock, I'm sure there are other members that can relate. There is another discussion you might find helpful to learn what others have shared.
It sounds like you are eating healthy and exercise which I think can help overall symptoms. Are you currently on any medications for your neuropathy or other supplements?
I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren's syndrome. I take gabapentin and duloxetine but pain isn't the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you'll have better luck with the chemo induced version.
I take just gabapentin, and for 9 years. Now, it's July 11, 2022.
My problem is mainly in my ankles and feet. Three doctors asked me if take gabapentin before I did, I tried pain killers, but they didn't work.
I take just gabapentin, and for 9 years. Now, it's July 11, 2022.
My problem is mainly in my ankles and feet. Three doctors asked me if take gabapentin before I did, I tried pain killers, but they didn't work.
Hello @awroberts111, Welcome to Connect. You mentioned you have been taking gabapentin for your neuropathy pain in your ankles and feet for the past 9 years. It sounds like a good thing that you haven't seen the neuropathy progress further up your legs. I think it's good that you are seeing a neurologist in a few days. Were you diagnosed with neuropathy when the gabapentin treatment was started?
I take just gabapentin, and for 9 years. Now, it's July 11, 2022.
My problem is mainly in my ankles and feet. Three doctors asked me if take gabapentin before I did, I tried pain killers, but they didn't work.
I take just take gabapentin, and for 9 years. Now, it's July 11, 2022.
My problem is mainly in my ankles and feet. Three doctors asked me if take gabapentin, before I did.
I tried pain killers, but they didn't work.
Gabapentin works, as long as I take it on time, now, it's a controlled substance in Virginia, but I don't know why.
Hello @awroberts111, Welcome to Connect. You mentioned you have been taking gabapentin for your neuropathy pain in your ankles and feet for the past 9 years. It sounds like a good thing that you haven't seen the neuropathy progress further up your legs. I think it's good that you are seeing a neurologist in a few days. Were you diagnosed with neuropathy when the gabapentin treatment was started?
I was diagnosed with neuropathy when the gabapentin treatment was started. I have not noticed the neuropathy progress up my legs. I have seen several neurologists, but to no avail.
Apparently, after many MRIs, the last neurogist discovered a slight bump in my spinal chord, which suggeted an irregularity inside the chord, near T11. Apparently the many previous MRIs did not discover it. It was apparently less than a cm, too small for MRIs to detect it.
It is so frustrating, especially since I live 8 miles out in the country from town and have to depend on everyone to help me. The cancer society offers me a ride on service for medical appointments and my health insurance pays for rides like to the dentist so that part works out well. An elderly friend of mine (like me)has numb feet and he drives with hand controls. I have a steep ride down off of my property and I don't think I could relearn with hand controls.
Hello, I've been wrestling with small fiber diabetic neuropathy for nearly four years and wanted to learn more about how people cope with this disorder. Diminished mobility and balance is my top concern. FWIW, I'm a retired 67 y.o. widower living in CA and AZ. Thank you.
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Diagnosed with Non Length-Dependent Small Fiber Neuropathy about 15 years ago. 66 years old now. No diabetes Always very fit. 6’3”, 185 lbs. Been thru all the treatments that I’ve ever heard of. No saliva. Ruined my teeth. Burning eyes, ears nose. Ringing ears. Stinging face, torso, back. Terrible pain in limbs. Starting to affect my muscles now. Stiffness. Weakness.
Lotsa fun! Anybody that can relate?
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1 ReactionWelcome @jemock, I'm sure there are other members that can relate. There is another discussion you might find helpful to learn what others have shared.
-- non-length dependent neuropathy.: https://connect.mayoclinic.org/discussion/non-length-dependent-neuropathy/
It sounds like you are eating healthy and exercise which I think can help overall symptoms. Are you currently on any medications for your neuropathy or other supplements?
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Like -
Helpful -
Hug
1 ReactionI take just gabapentin, and for 9 years. Now, it's July 11, 2022.
My problem is mainly in my ankles and feet. Three doctors asked me if take gabapentin before I did, I tried pain killers, but they didn't work.
-
Like -
Helpful -
Hug
1 ReactionHello @awroberts111, Welcome to Connect. You mentioned you have been taking gabapentin for your neuropathy pain in your ankles and feet for the past 9 years. It sounds like a good thing that you haven't seen the neuropathy progress further up your legs. I think it's good that you are seeing a neurologist in a few days. Were you diagnosed with neuropathy when the gabapentin treatment was started?
I take just take gabapentin, and for 9 years. Now, it's July 11, 2022.
My problem is mainly in my ankles and feet. Three doctors asked me if take gabapentin, before I did.
I tried pain killers, but they didn't work.
Gabapentin works, as long as I take it on time, now, it's a controlled substance in Virginia, but I don't know why.
I was diagnosed with neuropathy when the gabapentin treatment was started. I have not noticed the neuropathy progress up my legs. I have seen several neurologists, but to no avail.
Apparently, after many MRIs, the last neurogist discovered a slight bump in my spinal chord, which suggeted an irregularity inside the chord, near T11. Apparently the many previous MRIs did not discover it. It was apparently less than a cm, too small for MRIs to detect it.
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1 ReactionYes, I developed peripheral neuropathy to the point I can no longer drive after having Taxol during chemo.
I know that day when I'm no longer able to drive is coming. I just hope I'm ready when it does come 👴
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1 ReactionIt is so frustrating, especially since I live 8 miles out in the country from town and have to depend on everyone to help me. The cancer society offers me a ride on service for medical appointments and my health insurance pays for rides like to the dentist so that part works out well. An elderly friend of mine (like me)has numb feet and he drives with hand controls. I have a steep ride down off of my property and I don't think I could relearn with hand controls.
-
Like -
Helpful -
Hug
2 ReactionsHello, I've been wrestling with small fiber diabetic neuropathy for nearly four years and wanted to learn more about how people cope with this disorder. Diminished mobility and balance is my top concern. FWIW, I'm a retired 67 y.o. widower living in CA and AZ. Thank you.
-
Like -
Helpful -
Hug
2 Reactions