Hi Michael, Welcome to Connect. I also have small fiber PN but only have the numbness, so no medications help with numbness. I shared my story and what has helped me in another discussion here - https://connect.mayoclinic.org/comment/310341/.
I also have accepted a new normal after being diagnosed with neuropathy but I still search and learn as much as I can about neuropathy and available treatments. I thought you might find these sites helpful.
I have been diagnosed with diabetes II approximately 5 years ago and then peripheral neuropathy started three years ago. The peripheral neuropathy symptoms begun with the numbness, tingling with the toes then feet as it grew to calves, thighs and hips. As of today, I am unable to feel feet and need to intake sleep pills for help fall asleep with the pain and nerve lightning strikes from feet to hips..
And far as doctors and specialist, I am only told to maintain my diabetes to help relieve the pain which is total misleading and dishonest. After many researched articles, I have found peripheral neuropathy is NOT curable as its nerve damage throughout the body.
I have been diagnosed with diabetes II approximately 5 years ago and then peripheral neuropathy started three years ago. The peripheral neuropathy symptoms begun with the numbness, tingling with the toes then feet as it grew to calves, thighs and hips. As of today, I am unable to feel feet and need to intake sleep pills for help fall asleep with the pain and nerve lightning strikes from feet to hips..
And far as doctors and specialist, I am only told to maintain my diabetes to help relieve the pain which is total misleading and dishonest. After many researched articles, I have found peripheral neuropathy is NOT curable as its nerve damage throughout the body.
Thank you for taking the time to reply to my comments.
I guess will continue to research for a near and/or entire cure. Someone will become filthy rich IF a cure is ever found.... I can only pray and hope while still alive someone finds a complete solution.
I agree. It is extremely unfortunate that doctors, specialist, etc. are unable to heal peripheral neuropathy. The symptoms of peripheral neuropathy started with dumbness, pain and tingling including hurtful nerve needle strikes in the feet and started upwards to my hips.
I tried medications such as Gabapentin, and Januvia, etc. for years without any reliefs and cures. I have also spent thousands of dollars with the meds including many massagers, etc. with no relief. Now, I tried to convince myself that I will have to deal with the discomfort and pain the rest of my life.
Ultimately, I have accepted to live with the conditions...
Sad to say, peripheral neuropathy conditions is not curable and I will not spend another dollar with doctors, meds, etc.. as it is a waste of money!!!
Michael - I do agree with your comments and I've been thinking for a few years why hasn't the medical field found out a way to fix this. Not try this medication or that medication. Yes, some help...for a while...and I'm glad that we have those meds but come up with the solution. No easy answer but my belief is that it has to do with money spent on research and priorities. When my neurologist told me that I would die with this but NOT from it, I knew then that PN was not on the front burner for a cure. Like many, I'm idiopathic. So, it looks like it's going to remain a mystery for a while.
I have molded myself to ignore the PN pain, nerve lightning strikes throughout the body especially feet and not to mention, major discomfort with everyday activities. It is so difficult to hold a job and tends to be a constant search and way of life for me. Before I know it, I may wind up in the streets and/or living out of my car because of my medical situations.
Also, I had to invent my own extra feet and shoe paddings and/or wear double cushion socks to ease pain with walking, exercise, etc.. I am 55 and figured with years of all doctors, specialist, emergency rooms, hospitals, clinics, etc.. I also found that there is NO real solution for PN as its been said its related to the diabetes II 'and' to better maintain glucose levels. Sadly, I found that PN will NEVER go away ultimately and prescriptions are only a waste of time and lots of money.
To say the least, doctors, specialist, etc. only prescribe Band-Aids to help with the discomfort of PN. Now, I have outstanding and enormous medical balances ever since but will have them until the day I am buried. AND I feel very sorry for those individuals that do not have medical insurance. You're dead!
I am still insulin dependent to reduce glucose levels to 250-300 as I had reached before into 600s and 700s but again will NEVER be normal and enjoy everyday life.
And finally, only want to educate and encourage people maintain your diabetes with insulin, meds, etc. BEFORE your PN kicks in....You will definitely regret it!!!
I have molded myself to ignore the PN pain, nerve lightning strikes throughout the body especially feet and not to mention, major discomfort with everyday activities. It is so difficult to hold a job and tends to be a constant search and way of life for me. Before I know it, I may wind up in the streets and/or living out of my car because of my medical situations.
Also, I had to invent my own extra feet and shoe paddings and/or wear double cushion socks to ease pain with walking, exercise, etc.. I am 55 and figured with years of all doctors, specialist, emergency rooms, hospitals, clinics, etc.. I also found that there is NO real solution for PN as its been said its related to the diabetes II 'and' to better maintain glucose levels. Sadly, I found that PN will NEVER go away ultimately and prescriptions are only a waste of time and lots of money.
To say the least, doctors, specialist, etc. only prescribe Band-Aids to help with the discomfort of PN. Now, I have outstanding and enormous medical balances ever since but will have them until the day I am buried. AND I feel very sorry for those individuals that do not have medical insurance. You're dead!
I am still insulin dependent to reduce glucose levels to 250-300 as I had reached before into 600s and 700s but again will NEVER be normal and enjoy everyday life.
And finally, only want to educate and encourage people maintain your diabetes with insulin, meds, etc. BEFORE your PN kicks in....You will definitely regret it!!!
You and @njed have really made me think. I agree if there’s a point that our visits/tests/solutions are exhausted with a Neurologist, and we walk out feeling there was absolutely no value or benefit from our expensive Specialist visit, we should downsize our doctor portfolio and put the prescription writing (for my much needed Gabapentin) on our PCP’s who I assume we all would have. That would free up Neurologists to spend time with those they may be able to help. The dreamer in me hopes that one day they’ll find something promising for relief or cure and want to see me again to see if it would help me. Will they call back old patients and say “Guess what, I think you need to make an appointment with me!!!” I doubt it, pretty sure that would never happen. But with a good forum like this, and trying to keep up with reputable (reported) updates or trials that we want to know more about, we could stay in the loop. I wonder if such a single-source database of “us people” could exist so they can just contact us regularly or have a focused “portal” type thing so we can easily access updates in PN, trials, participants wanted, research results etc. so help minimize all the googling across earth we do, and weed out all the snake oil salesman stuff, meaningless studies, non-reputable sources etc. Then we can make an appointment only if we have discovered something very possible we’ve learned might help us, which might very well be never again, but at least we’d all save time and money.
I totally agree with you. I will not spend another dime with medical services and we can only pray and dream for a real cure while we are still alive. PN is an awful and painful body condition not to mention diabetes. And it's extremely sad, and with PN it appears that doctors, specialist, and services are only interested where to send the huge bill to...... And as far as I am concerned while with NP pains, pills such as Gabapentin, Juniva, Lyrica, duloxetine, etc. are nothing but a scam and joke !!! Don't waste your money....
Michael - I do agree with your comments and I've been thinking for a few years why hasn't the medical field found out a way to fix this. Not try this medication or that medication. Yes, some help...for a while...and I'm glad that we have those meds but come up with the solution. No easy answer but my belief is that it has to do with money spent on research and priorities. When my neurologist told me that I would die with this but NOT from it, I knew then that PN was not on the front burner for a cure. Like many, I'm idiopathic. So, it looks like it's going to remain a mystery for a while.
mmata- I agree that there is not funding available for research, or clinical trials available. I'm sure that I am not the only one who can not feel their toes (absolutely none, on neither foot) which makes it hard to balance when standing or walking. Now, it's also the outside edge of one foot and the ball of both feet that has joined the numb squad too. I've fallen from this numbness various times too, but the various drs all tell me there is nothing they can offer to help me. I know that I'm not the only one that is discouraged and frustrated. My heart goes out to you.
mmata - My PN started much the same way. I now have polyneuropathy, both sensory and motor. When the motor became worse, I developed drop foot causing tripping followed then by poor balance. Due to drop foot, I was prescribed Ottobock walk on flex. I have not tripped with these on in 3 years and as an extreme benefit to me, the walk on flex help with balance in a huge way. I was in physical therapy at the time and my p-therapist got my primary doc to write the prescription. There are various types of orthotics out there. Ed
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I have been diagnosed with diabetes II approximately 5 years ago and then peripheral neuropathy started three years ago. The peripheral neuropathy symptoms begun with the numbness, tingling with the toes then feet as it grew to calves, thighs and hips. As of today, I am unable to feel feet and need to intake sleep pills for help fall asleep with the pain and nerve lightning strikes from feet to hips..
And far as doctors and specialist, I am only told to maintain my diabetes to help relieve the pain which is total misleading and dishonest. After many researched articles, I have found peripheral neuropathy is NOT curable as its nerve damage throughout the body.
I hope this answers your question.
Michael
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2 ReactionsThanks Michael, Well you are not alone. Other members have shared their experience in another discussion here:
-- Has anyone tried treatment for diabetic neuropathy ?: https://connect.mayoclinic.org/discussion/has-anyone-tried-treatment-for-diabetic-neuropathy/.
The Foundation for Peripheral Neuropathy had a webinar last September that you might find helpful.
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1 ReactionThank you! I will review the articles and videos.
Thank you for taking the time to reply to my comments.
I guess will continue to research for a near and/or entire cure. Someone will become filthy rich IF a cure is ever found.... I can only pray and hope while still alive someone finds a complete solution.
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1 ReactionWe have the following. Works perfectly and easy to install.
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1 ReactionMichael - I do agree with your comments and I've been thinking for a few years why hasn't the medical field found out a way to fix this. Not try this medication or that medication. Yes, some help...for a while...and I'm glad that we have those meds but come up with the solution. No easy answer but my belief is that it has to do with money spent on research and priorities. When my neurologist told me that I would die with this but NOT from it, I knew then that PN was not on the front burner for a cure. Like many, I'm idiopathic. So, it looks like it's going to remain a mystery for a while.
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5 ReactionsThank you, Ed!
I have molded myself to ignore the PN pain, nerve lightning strikes throughout the body especially feet and not to mention, major discomfort with everyday activities. It is so difficult to hold a job and tends to be a constant search and way of life for me. Before I know it, I may wind up in the streets and/or living out of my car because of my medical situations.
Also, I had to invent my own extra feet and shoe paddings and/or wear double cushion socks to ease pain with walking, exercise, etc.. I am 55 and figured with years of all doctors, specialist, emergency rooms, hospitals, clinics, etc.. I also found that there is NO real solution for PN as its been said its related to the diabetes II 'and' to better maintain glucose levels. Sadly, I found that PN will NEVER go away ultimately and prescriptions are only a waste of time and lots of money.
To say the least, doctors, specialist, etc. only prescribe Band-Aids to help with the discomfort of PN. Now, I have outstanding and enormous medical balances ever since but will have them until the day I am buried. AND I feel very sorry for those individuals that do not have medical insurance. You're dead!
I am still insulin dependent to reduce glucose levels to 250-300 as I had reached before into 600s and 700s but again will NEVER be normal and enjoy everyday life.
And finally, only want to educate and encourage people maintain your diabetes with insulin, meds, etc. BEFORE your PN kicks in....You will definitely regret it!!!
Again, thanks for your response.
Michael
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Helpful -
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8 ReactionsYou and @njed have really made me think. I agree if there’s a point that our visits/tests/solutions are exhausted with a Neurologist, and we walk out feeling there was absolutely no value or benefit from our expensive Specialist visit, we should downsize our doctor portfolio and put the prescription writing (for my much needed Gabapentin) on our PCP’s who I assume we all would have. That would free up Neurologists to spend time with those they may be able to help. The dreamer in me hopes that one day they’ll find something promising for relief or cure and want to see me again to see if it would help me. Will they call back old patients and say “Guess what, I think you need to make an appointment with me!!!” I doubt it, pretty sure that would never happen. But with a good forum like this, and trying to keep up with reputable (reported) updates or trials that we want to know more about, we could stay in the loop. I wonder if such a single-source database of “us people” could exist so they can just contact us regularly or have a focused “portal” type thing so we can easily access updates in PN, trials, participants wanted, research results etc. so help minimize all the googling across earth we do, and weed out all the snake oil salesman stuff, meaningless studies, non-reputable sources etc. Then we can make an appointment only if we have discovered something very possible we’ve learned might help us, which might very well be never again, but at least we’d all save time and money.
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Helpful -
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8 ReactionsI totally agree with you. I will not spend another dime with medical services and we can only pray and dream for a real cure while we are still alive. PN is an awful and painful body condition not to mention diabetes. And it's extremely sad, and with PN it appears that doctors, specialist, and services are only interested where to send the huge bill to...... And as far as I am concerned while with NP pains, pills such as Gabapentin, Juniva, Lyrica, duloxetine, etc. are nothing but a scam and joke !!! Don't waste your money....
-
Like -
Helpful -
Hug
1 Reactionmmata- I agree that there is not funding available for research, or clinical trials available. I'm sure that I am not the only one who can not feel their toes (absolutely none, on neither foot) which makes it hard to balance when standing or walking. Now, it's also the outside edge of one foot and the ball of both feet that has joined the numb squad too. I've fallen from this numbness various times too, but the various drs all tell me there is nothing they can offer to help me. I know that I'm not the only one that is discouraged and frustrated. My heart goes out to you.
-
Like -
Helpful -
Hug
5 Reactionsmmata - My PN started much the same way. I now have polyneuropathy, both sensory and motor. When the motor became worse, I developed drop foot causing tripping followed then by poor balance. Due to drop foot, I was prescribed Ottobock walk on flex. I have not tripped with these on in 3 years and as an extreme benefit to me, the walk on flex help with balance in a huge way. I was in physical therapy at the time and my p-therapist got my primary doc to write the prescription. There are various types of orthotics out there. Ed
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Like -
Helpful -
Hug
6 Reactions