Toe Pain Associated with Peripheral Neuropathy

Posted by rdear45 @rdear45, Nov 9, 2023

I have had peripheral neuropathy for many years, and it has progressively gotten worse, especially in my toes. Specifically in my pinky toe in my left foot and in my big toe in my right foot. The pain in these toes is unbearable at times. I even have a spinal stimulator. The only thing that addresses the pain is Oxycodone medication.

Does anyone else have a similar experience with toe pain? If so, what have you done to address the pain.

Thank you.
Rdear45

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Profile picture for madmouse43 @madmouse43

I have a similar situation that I have been working through for about 8-10 years. I have severe pain that occurs in my right middle toe that acts like neuropathy and me and my medical providers have been treating it as such with little or no improvement.

About a year ago a PCP personal friend of mine made an observation that changed everything. After bringing her up on my condition on a visit and telling her my experience she hit me with on observation. I suffer from Diabetes due to my time in the service over in Vietnam, so everyone thought that what I had was diabetic peripheral neuropathy. My PCP friend told me that she thought my medical team was missing something because diabetic PN must be symmetrical (in other words manifesting itself on both sides of my body the same way, and my symptoms were asymmetrical as shown by the pain in my right middle toe. This of course has been complicated due to the fact that I do have diabetic PN that is manifesting itself in both feet and legs up to my knees, but that pain is very minimal compared to my right middle toe which can be excruciating and sleep robbing as it affects me when I lie down to go to sleep at night.

I was told to start looking elsewhere to discover what else might be causing the situation. As the pain can be adjusted to a small degree by changing my position in bed the idea of sciatica came up. Fortunately, I am VA (90% disabled) so I don't have to carry the costs of tests, so I went for an MRI on my spinal cord to see if there as something there causing the problem. The test came back that my spine looked good for someone my age (83) and the spine surgeon's PA could find nothing that would cause the problem. So, that ruled out the sciatica radiating down to my right middle toe.

The next step to find the problem was to check in with my podiatrist, which is where we are now, and I am scheduled for another MRI on my right foot. Don't know how this is going to turn out but I am hopeful of finally getting to the bottom of this.

Something else that I discovered that has really made a difference is medication. My PCP put me on Gabapentin 600mg 1-1-4. This did little to help with the pain but was really started making a mess of my brain. (almost lost my wife of 52 years on this one.) The civilian medical services availability in my area is getting really complicated with medical provider services discovering that NPs and PAs are cheaper than doctors so have been going thru doctors like crazy as they are becoming no longer available. I did connect with a new civilian PCP who weaned me off the Gabapentin and put me instead on Ropinirole HCL which is primarily used for Parkinsons and also in different doses used for Restless Leg Syndrome (RLS) but according to my studying (I am not a doctor or a pharmacist so please do your own studies.) uses some of the same approaches as the Gabapentin but w/o some of the real bad side-effects. I was informed that some of the side effects include drowsiness and upset stomach. I am sure that there are others that I am unaware of, but I have experienced no side-effects, yet. I am on a high dose of 3mg which was introduced as .5mg doses intervals, which I take an hour before bedtime and it has made all of the difference in the world. I am finally able to get something that gets close to a good night's sleep. This does not remove all of the pain and discomfort, but it sure takes the edge of it off and so far, is an answer to prayer.

I wanted to share my experience in depth to maybe start up some fresh ideas and approaches that might help someone else. I am not saying that I have the answer only that I have found some answers that help me. As I have delved into treatments and remedies for this over the past 8-10 years I have learned the hard way that what works for me doesn't necessarily work for anyone else and visa versa. I feel like I have tried every "scam", supplement and cream that I could find out there without much luck. So, if this helps you in any way please take what helps and throw away the rest.

Jump to this post

@madmouse43 This may sound crazy, but go to Vitality Extract oils on line and order Aches and Pain roll on. It is $13.00. It really works. you can roll it on any part that hurts and it helps. sometimes it stops quickly and sometimes it takes a few times of putting it on. I have arthritis in my hand and I have used it every day, and it has just about gone. The bible says to use the things God have given us and this oil is 100% pure from the land. I know it will help. Everyone needs to try it. They have other things also, but I love this Ache and Pain Oil. It cost $9.95 for shipping, but you can get other things if you want or as many and its is well worth it. Good Luck and God Bless

REPLY
Profile picture for madmouse43 @madmouse43

I have a similar situation that I have been working through for about 8-10 years. I have severe pain that occurs in my right middle toe that acts like neuropathy and me and my medical providers have been treating it as such with little or no improvement.

About a year ago a PCP personal friend of mine made an observation that changed everything. After bringing her up on my condition on a visit and telling her my experience she hit me with on observation. I suffer from Diabetes due to my time in the service over in Vietnam, so everyone thought that what I had was diabetic peripheral neuropathy. My PCP friend told me that she thought my medical team was missing something because diabetic PN must be symmetrical (in other words manifesting itself on both sides of my body the same way, and my symptoms were asymmetrical as shown by the pain in my right middle toe. This of course has been complicated due to the fact that I do have diabetic PN that is manifesting itself in both feet and legs up to my knees, but that pain is very minimal compared to my right middle toe which can be excruciating and sleep robbing as it affects me when I lie down to go to sleep at night.

I was told to start looking elsewhere to discover what else might be causing the situation. As the pain can be adjusted to a small degree by changing my position in bed the idea of sciatica came up. Fortunately, I am VA (90% disabled) so I don't have to carry the costs of tests, so I went for an MRI on my spinal cord to see if there as something there causing the problem. The test came back that my spine looked good for someone my age (83) and the spine surgeon's PA could find nothing that would cause the problem. So, that ruled out the sciatica radiating down to my right middle toe.

The next step to find the problem was to check in with my podiatrist, which is where we are now, and I am scheduled for another MRI on my right foot. Don't know how this is going to turn out but I am hopeful of finally getting to the bottom of this.

Something else that I discovered that has really made a difference is medication. My PCP put me on Gabapentin 600mg 1-1-4. This did little to help with the pain but was really started making a mess of my brain. (almost lost my wife of 52 years on this one.) The civilian medical services availability in my area is getting really complicated with medical provider services discovering that NPs and PAs are cheaper than doctors so have been going thru doctors like crazy as they are becoming no longer available. I did connect with a new civilian PCP who weaned me off the Gabapentin and put me instead on Ropinirole HCL which is primarily used for Parkinsons and also in different doses used for Restless Leg Syndrome (RLS) but according to my studying (I am not a doctor or a pharmacist so please do your own studies.) uses some of the same approaches as the Gabapentin but w/o some of the real bad side-effects. I was informed that some of the side effects include drowsiness and upset stomach. I am sure that there are others that I am unaware of, but I have experienced no side-effects, yet. I am on a high dose of 3mg which was introduced as .5mg doses intervals, which I take an hour before bedtime and it has made all of the difference in the world. I am finally able to get something that gets close to a good night's sleep. This does not remove all of the pain and discomfort, but it sure takes the edge of it off and so far, is an answer to prayer.

I wanted to share my experience in depth to maybe start up some fresh ideas and approaches that might help someone else. I am not saying that I have the answer only that I have found some answers that help me. As I have delved into treatments and remedies for this over the past 8-10 years I have learned the hard way that what works for me doesn't necessarily work for anyone else and visa versa. I feel like I have tried every "scam", supplement and cream that I could find out there without much luck. So, if this helps you in any way please take what helps and throw away the rest.

Jump to this post

@madmouse43 maybe it's Morton's Neuroma, I really hate that blanket term of peripheral neuropathy when there are so many other issues that could be going on. You might have a compressed nerve as well.

REPLY

Maybe you have intermetatarsal bursitis. Or compressed nerves in your foot or ankle

REPLY
Profile picture for slspencer @slspencer

@madmouse43 maybe it's Morton's Neuroma, I really hate that blanket term of peripheral neuropathy when there are so many other issues that could be going on. You might have a compressed nerve as well.

Jump to this post

Hopefully my MRI put that to bed.

REPLY
Profile picture for faybe @faybe

@heisenberg34 my advice helped. thank God

Jump to this post

@faybe And there it is, back with little pity. Last night as I tried to go to sleep, the old sinuses decided to close up quite a bit. No matter how hard I tried to breathe normally, they would not cooperate. I was forced to shoot some fluticasone up both nostrils. Of course I forgot that it takes about 30 minutes for that stuff to take effect. I will try rinsing my sinuses later this am. I gave myself a shot of fluticasone this morning. There must be something causing my sinuses to behave like a spoiled child. It's the Law of Cause and Effect. My sinuses are the effect, and the cause is the??. No. all the docs do is prescribe more drugs... this spray, that pill. etc. What ever happened to the days of doctors looking into every nook and cranny to figure out exactly is causing your issue?

REPLY
Profile picture for faybe @faybe

@madmouse43 This may sound crazy, but go to Vitality Extract oils on line and order Aches and Pain roll on. It is $13.00. It really works. you can roll it on any part that hurts and it helps. sometimes it stops quickly and sometimes it takes a few times of putting it on. I have arthritis in my hand and I have used it every day, and it has just about gone. The bible says to use the things God have given us and this oil is 100% pure from the land. I know it will help. Everyone needs to try it. They have other things also, but I love this Ache and Pain Oil. It cost $9.95 for shipping, but you can get other things if you want or as many and its is well worth it. Good Luck and God Bless

Jump to this post

@faybe I wonder if this natural roll-on has any kind of warranty/guarantee? I guess $25 bucks is a small price to pay in order to find out if something works. I have spent much more on other stuff.

REPLY
Profile picture for heisenberg34 @heisenberg34

@faybe I wonder if this natural roll-on has any kind of warranty/guarantee? I guess $25 bucks is a small price to pay in order to find out if something works. I have spent much more on other stuff.

Jump to this post

@heisenberg34 Yes, If you don't like it you can send it back for a refund. If you will just give it a chance, I know you will love it. I have bought enough for my family and they all love it. It has cured my Daughter Eczema. My grandson had a ingrown toenail that was hurting bad and he used it. It stopped hurting. He had to eventually go to the foot Doctor, but he loves it. My Granddaughter has Migraines and the roll on for Migraines helped her. She loves it. It helped my son's Arthritis and also mine. It stops my neck from hurting and my muscles. you won't regret getting it. Fay

REPLY
Profile picture for heisenberg34 @heisenberg34

@faybe And there it is, back with little pity. Last night as I tried to go to sleep, the old sinuses decided to close up quite a bit. No matter how hard I tried to breathe normally, they would not cooperate. I was forced to shoot some fluticasone up both nostrils. Of course I forgot that it takes about 30 minutes for that stuff to take effect. I will try rinsing my sinuses later this am. I gave myself a shot of fluticasone this morning. There must be something causing my sinuses to behave like a spoiled child. It's the Law of Cause and Effect. My sinuses are the effect, and the cause is the??. No. all the docs do is prescribe more drugs... this spray, that pill. etc. What ever happened to the days of doctors looking into every nook and cranny to figure out exactly is causing your issue?

Jump to this post

@heisenberg34 My guess is that you have allergies. Get you some allergy pill at the drug store and try that. I have allergies and I have to blow all the time, especially in the morning. The pills helps

REPLY
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