I love this site. It helps us ease the pain from lots of ailments. In this case, I am talking about combating PN. It helps to be able to ask here, what have you tried?" What are you using? What helps the most? Here at this helpful site we can get experienced responses! Nothing works the same for everyone, we know that! Most of the time, we must keep searching! My PN arrived to me, without any helpful information known at that time in the late 80's. I first followed one Doctor's diagnosis and had surgery, which was a complete failure. That caused me to walk on my heel for an entire year! Yep, that created more medical, (now hip) problems! We know how different we all respond to the same "good medicine", but we all have to keep trying to find our own solutions! My PN forced me to change careers. The amount of pain with PN we know is great. I have seen many doctors, and even had surgery that failed, The problem is we all will have to try a bunch of different "recipes" before finding the one that works for that particular person's pain AND that kind of PN. " We still don't know enough about it. Most drugs have some side effects for me, but during the day it is worth the trade off! . At night, I can only sleep if I have used THC cream or ointment on my feet to quiet down my foot pain. We all keep learning, so keep trying, there will be something you will find that helps! Best luck to all!
I, too, am in the non-diabetic group. In fact, my neuropathy has yet to be connected to any underlying symptoms. Some autoimmune diseases like RA, lupus and others have been ruled out. I do not have numbness--mostly tingling in my feet and shins and sometimes a rope burn feel in my arms--that comes and goes. Physical therapy has been great for me--I had some muscle wasting so I am enjoying the challenge of trying to rebuild my body. I sometimes get a bit of fatigue and any soreness--which is not painful--I attribute this to my body trying to rise to the challenges. If you have any ideas about anti-inflammatory foods I am all ears. I am cutting back on sugar and some dairy. All in all, my life has changed and I, like you, am trying to cope.
I was diagnosed with length dependent sensiromotor neuropathy a few months ago. I was diagnosed with a compressed nerve which is chronic. I was surprised to hear about the neuropathy. My understanding is that it is progressive. I became quite depressed but now I am feeling pretty good with acceptance. I walk with foot discomfort. It is difficult to do much else. I am on Gabapentin which niw seems ti be helping. Physical therapy seems to be helping the compressed nerve issue but not the neuropathy.
I wonder what other people's experience is with this?
I was diagnosed with length dependent sensiromotor neuropathy a few months ago. I was diagnosed with a compressed nerve which is chronic. I was surprised to hear about the neuropathy. My understanding is that it is progressive. I became quite depressed but now I am feeling pretty good with acceptance. I walk with foot discomfort. It is difficult to do much else. I am on Gabapentin which niw seems ti be helping. Physical therapy seems to be helping the compressed nerve issue but not the neuropathy.
I wonder what other people's experience is with this?
As a lot of people on this site I developed neuropathy through receiving chemotherapy. I have had it for 7-8years. I use gabapentin. Not much else helps. Since yours is so new have you tried acupuncture?
As a lot of people on this site I developed neuropathy through receiving chemotherapy. I have had it for 7-8years. I use gabapentin. Not much else helps. Since yours is so new have you tried acupuncture?
I, too, am in the non-diabetic group. In fact, my neuropathy has yet to be connected to any underlying symptoms. Some autoimmune diseases like RA, lupus and others have been ruled out. I do not have numbness--mostly tingling in my feet and shins and sometimes a rope burn feel in my arms--that comes and goes. Physical therapy has been great for me--I had some muscle wasting so I am enjoying the challenge of trying to rebuild my body. I sometimes get a bit of fatigue and any soreness--which is not painful--I attribute this to my body trying to rise to the challenges. If you have any ideas about anti-inflammatory foods I am all ears. I am cutting back on sugar and some dairy. All in all, my life has changed and I, like you, am trying to cope.
@arcuri24 I think the non-diabetic group of us with PN is substantial. In 2019, I was so convinced that my PN was related to lower back issues, I was able to schedule an appointment with Mayo in MN. After spending several days of thorough testing, the cause of my PN is unknown. Yet, all my symptoms point towards having diabetes that every doctor I've been to all ask me several times if I'm a diabetic. My blood work is normal. Mayo could not give me any definitive cause. I know what I have but not the why. After chasing the why down the rabbit hole for years, I finally decided to concentrate on how to live with PN. You are right, PN is a life changing experience and for me, acceptance and learning to live with it, making necessary adjustments along the way is important. Be safe and best to you going forward. Ed
@davidmoll
My 40 year battle with neuropathy most likely was caused by years of toxic effects of seizure medications. But as @njed once wisely pointed out I will never know for sure. It just seems the most likely cause. My neuropathy did progress and is considered permanent now at
stage 4. Neuropathy may stabilize or even improve.
Although my neuropathy was stable for probably 30 years it did progress to stage 4. Thats when my pain disappeared, replaced by numbness. So as far as I'm concerned, even though the progression brought on ED, bowel and bladder complications at least the horrendous pain is gone. For me, the issues from progression are easier to deal with than the pain was. I try and look at any potential progression in a positive way. Maybe it will improve more even though the doctors say otherwise. Doctors arent clairvoyant but I've had some who thought they were.
Take care,
Jake
@arcuri24 I think the non-diabetic group of us with PN is substantial. In 2019, I was so convinced that my PN was related to lower back issues, I was able to schedule an appointment with Mayo in MN. After spending several days of thorough testing, the cause of my PN is unknown. Yet, all my symptoms point towards having diabetes that every doctor I've been to all ask me several times if I'm a diabetic. My blood work is normal. Mayo could not give me any definitive cause. I know what I have but not the why. After chasing the why down the rabbit hole for years, I finally decided to concentrate on how to live with PN. You are right, PN is a life changing experience and for me, acceptance and learning to live with it, making necessary adjustments along the way is important. Be safe and best to you going forward. Ed
@davidmoll
My 40 year battle with neuropathy most likely was caused by years of toxic effects of seizure medications. But as @njed once wisely pointed out I will never know for sure. It just seems the most likely cause. My neuropathy did progress and is considered permanent now at
stage 4. Neuropathy may stabilize or even improve.
Although my neuropathy was stable for probably 30 years it did progress to stage 4. Thats when my pain disappeared, replaced by numbness. So as far as I'm concerned, even though the progression brought on ED, bowel and bladder complications at least the horrendous pain is gone. For me, the issues from progression are easier to deal with than the pain was. I try and look at any potential progression in a positive way. Maybe it will improve more even though the doctors say otherwise. Doctors arent clairvoyant but I've had some who thought they were.
Take care,
Jake
Jake, well my friend and fellow victim of epilepsy, there is nothing wrong with your memory. Wow! I do recall making that comment about never knowing for sure, but I had to really tape my memory bank and as unfortunate as it is, there is a strong possibility we are both impacted by the meds which as of this month, I've now been on Dilantin for 53 years. No neurologist will ever agree with me that these meds could have been the cause of my PN.
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I love this site. It helps us ease the pain from lots of ailments. In this case, I am talking about combating PN. It helps to be able to ask here, what have you tried?" What are you using? What helps the most? Here at this helpful site we can get experienced responses! Nothing works the same for everyone, we know that! Most of the time, we must keep searching! My PN arrived to me, without any helpful information known at that time in the late 80's. I first followed one Doctor's diagnosis and had surgery, which was a complete failure. That caused me to walk on my heel for an entire year! Yep, that created more medical, (now hip) problems! We know how different we all respond to the same "good medicine", but we all have to keep trying to find our own solutions! My PN forced me to change careers. The amount of pain with PN we know is great. I have seen many doctors, and even had surgery that failed, The problem is we all will have to try a bunch of different "recipes" before finding the one that works for that particular person's pain AND that kind of PN. " We still don't know enough about it. Most drugs have some side effects for me, but during the day it is worth the trade off! . At night, I can only sleep if I have used THC cream or ointment on my feet to quiet down my foot pain. We all keep learning, so keep trying, there will be something you will find that helps! Best luck to all!
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4 ReactionsI, too, am in the non-diabetic group. In fact, my neuropathy has yet to be connected to any underlying symptoms. Some autoimmune diseases like RA, lupus and others have been ruled out. I do not have numbness--mostly tingling in my feet and shins and sometimes a rope burn feel in my arms--that comes and goes. Physical therapy has been great for me--I had some muscle wasting so I am enjoying the challenge of trying to rebuild my body. I sometimes get a bit of fatigue and any soreness--which is not painful--I attribute this to my body trying to rise to the challenges. If you have any ideas about anti-inflammatory foods I am all ears. I am cutting back on sugar and some dairy. All in all, my life has changed and I, like you, am trying to cope.
-
Like -
Helpful -
Hug
2 ReactionsI was diagnosed with length dependent sensiromotor neuropathy a few months ago. I was diagnosed with a compressed nerve which is chronic. I was surprised to hear about the neuropathy. My understanding is that it is progressive. I became quite depressed but now I am feeling pretty good with acceptance. I walk with foot discomfort. It is difficult to do much else. I am on Gabapentin which niw seems ti be helping. Physical therapy seems to be helping the compressed nerve issue but not the neuropathy.
I wonder what other people's experience is with this?
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Helpful -
Hug
2 ReactionsAs a lot of people on this site I developed neuropathy through receiving chemotherapy. I have had it for 7-8years. I use gabapentin. Not much else helps. Since yours is so new have you tried acupuncture?
That is a good idea. I wonder where you experience symptoms after 8 years?
I am just curious about progression issues.
@arcuri24 I think the non-diabetic group of us with PN is substantial. In 2019, I was so convinced that my PN was related to lower back issues, I was able to schedule an appointment with Mayo in MN. After spending several days of thorough testing, the cause of my PN is unknown. Yet, all my symptoms point towards having diabetes that every doctor I've been to all ask me several times if I'm a diabetic. My blood work is normal. Mayo could not give me any definitive cause. I know what I have but not the why. After chasing the why down the rabbit hole for years, I finally decided to concentrate on how to live with PN. You are right, PN is a life changing experience and for me, acceptance and learning to live with it, making necessary adjustments along the way is important. Be safe and best to you going forward. Ed
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6 Reactions@davidmoll
My 40 year battle with neuropathy most likely was caused by years of toxic effects of seizure medications. But as @njed once wisely pointed out I will never know for sure. It just seems the most likely cause. My neuropathy did progress and is considered permanent now at
stage 4. Neuropathy may stabilize or even improve.
Although my neuropathy was stable for probably 30 years it did progress to stage 4. Thats when my pain disappeared, replaced by numbness. So as far as I'm concerned, even though the progression brought on ED, bowel and bladder complications at least the horrendous pain is gone. For me, the issues from progression are easier to deal with than the pain was. I try and look at any potential progression in a positive way. Maybe it will improve more even though the doctors say otherwise. Doctors arent clairvoyant but I've had some who thought they were.
Take care,
Jake
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3 ReactionsThank you, Ed
Jake, well my friend and fellow victim of epilepsy, there is nothing wrong with your memory. Wow! I do recall making that comment about never knowing for sure, but I had to really tape my memory bank and as unfortunate as it is, there is a strong possibility we are both impacted by the meds which as of this month, I've now been on Dilantin for 53 years. No neurologist will ever agree with me that these meds could have been the cause of my PN.
-
Like -
Helpful -
Hug
2 Reactions