Hi Chris, Any suggestions to relieve the burning pain 24 hrs a day? It has been ten years now and relief would be wonderful!!! I have no balance also and use a walker. I used to show and ride my horses also but don't believe that effected this problem Need relief!!!!!!
I'm so sorry to hear about that. I had burning pain and numbness for 20 years due to a misdiagnosis of gout. At last a rheumatologist tested me thoroughly and said I didn't have gout and had never had it and go see a neurologist. The neurologist put me on Alpha Lipoic Acid (ALA) and in 2 weeks I started to get relief. I now take Pure Encapsulations ALA but due to input from here, I will soon be switching to R-ALA. Good thing about ALA is that near are no side effects. Hope you get some relief.
@user_ch98d0b5c, I don't believe it's against the rules to name a doctor who has helped you in some way. I am thinking it's more along the line of what @barbarn is suggesting. There are so many types of PN and no one treatment works for everyone. That said if I found a doctor that "fixed" the numbness in my PN I would certainly give them the credit. I have found supplements that help but they do not cure PN and they may or may not work for everyone.
So I would just like to add, keep asking questions and sharing what you find if something works for you. We are all on this journey together.
Welcome @fredkerns, I'm sorry to hear that you have trouble walking after your operaton. There is another discussion on the supplements that I take here:
--- Have you tried the new Protocol 525 product for neuropathy relief? https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/.
Hopefully you will get some answers when you have your appointment in June with the neurologist. Do you mind sharing what operation you had?
I'm so sorry to hear about that. I had burning pain and numbness for 20 years due to a misdiagnosis of gout. At last a rheumatologist tested me thoroughly and said I didn't have gout and had never had it and go see a neurologist. The neurologist put me on Alpha Lipoic Acid (ALA) and in 2 weeks I started to get relief. I now take Pure Encapsulations ALA but due to input from here, I will soon be switching to R-ALA. Good thing about ALA is that near are no side effects. Hope you get some relief.
Thanks for your input!! I'm on my way to try it!!! Aleve, Tylenol, etc just doesn't fully help nerve pain I have found out!! What has everyone done for terrible balance issues??
I had a nerve block for occipital neuralgia it did not help. You should try this block. I will try PT again I already did 3 months it did not help . Thanks for your concern.
I have deep peroneal neuropathy, bilateral, from here’s to toes. Not diabetic, but neurologist says it’s from a rather quick large weight loss. Started with drop foot, then full blown neuropathy. I take flexeril for the cramps and bolts of lightning strike pain.
Hopefully you can get to a large teaching hospital, like Mayo, or something closer to you. Pain 24/7 isn’t something a good neurologist or pain doctor will tolerate. They will work with you to ease this suffering. Please don’t accept that this level of pain is necessary! Find the right medical center for you!
In the same situation constant pain 24/7. Hell of away to start 2023. Had an operation on my right leg now my right foot is constantly burning and I can not stand on it.
Thanks for your input!! I'm on my way to try it!!! Aleve, Tylenol, etc just doesn't fully help nerve pain I have found out!! What has everyone done for terrible balance issues??
For balance problems I went to physical therapy and worked my heart out. Then I used a cane for a year, now I can walk (no cane) without falling. I always wear supportive footwear (and it’s not all ugly!)
@user_ch98d0b5c I have patchy Non-Length Dependent Small Fiber Neuropathy (NLD SFN). No confirmed underlying cause, though I've had an Inflammatory Bowel Disease for 35 years, so I think that has to be the best bet. I've done all of the bloodwork, a Genetic test, an EMG (negative) and a skin biopsy (which confirmed DX). It is contained in my feet since onset about 2.5 years ago. Symptoms include burning sensations that are getting worse, tingling and numbness. Currently maxed out on Gabapentin at 3600mg daily but I don't think it helps much. I will say my stress level has gone way up the last few months and I have seen a direct correlation between higher stress and more burning in my feet. I think I will have to look at Gabapentin alternatives or adding something on top of it in the near future. I hope you are coping with your symptoms. That seems to be all there is with this-symptom management.
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I'm so sorry to hear about that. I had burning pain and numbness for 20 years due to a misdiagnosis of gout. At last a rheumatologist tested me thoroughly and said I didn't have gout and had never had it and go see a neurologist. The neurologist put me on Alpha Lipoic Acid (ALA) and in 2 weeks I started to get relief. I now take Pure Encapsulations ALA but due to input from here, I will soon be switching to R-ALA. Good thing about ALA is that near are no side effects. Hope you get some relief.
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1 ReactionSo what are the supplements. I had an operation and now I can barely walk. Can not get in to see a neurologist untill june.
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1 ReactionWelcome @fredkerns, I'm sorry to hear that you have trouble walking after your operaton. There is another discussion on the supplements that I take here:
--- Have you tried the new Protocol 525 product for neuropathy relief?
https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/.
Hopefully you will get some answers when you have your appointment in June with the neurologist. Do you mind sharing what operation you had?
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1 ReactionThanks for your input!! I'm on my way to try it!!! Aleve, Tylenol, etc just doesn't fully help nerve pain I have found out!! What has everyone done for terrible balance issues??
I haven’t found anything that helps. Painful from my toes to all through my feet up my legs throat buttocks.
I have deep peroneal neuropathy, bilateral, from here’s to toes. Not diabetic, but neurologist says it’s from a rather quick large weight loss. Started with drop foot, then full blown neuropathy. I take flexeril for the cramps and bolts of lightning strike pain.
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2 ReactionsIn the same situation constant pain 24/7. Hell of away to start 2023. Had an operation on my right leg now my right foot is constantly burning and I can not stand on it.
For balance problems I went to physical therapy and worked my heart out. Then I used a cane for a year, now I can walk (no cane) without falling. I always wear supportive footwear (and it’s not all ugly!)
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3 Reactions@user_ch98d0b5c I have patchy Non-Length Dependent Small Fiber Neuropathy (NLD SFN). No confirmed underlying cause, though I've had an Inflammatory Bowel Disease for 35 years, so I think that has to be the best bet. I've done all of the bloodwork, a Genetic test, an EMG (negative) and a skin biopsy (which confirmed DX). It is contained in my feet since onset about 2.5 years ago. Symptoms include burning sensations that are getting worse, tingling and numbness. Currently maxed out on Gabapentin at 3600mg daily but I don't think it helps much. I will say my stress level has gone way up the last few months and I have seen a direct correlation between higher stress and more burning in my feet. I think I will have to look at Gabapentin alternatives or adding something on top of it in the near future. I hope you are coping with your symptoms. That seems to be all there is with this-symptom management.
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2 ReactionsI haven’t found anything that stop the burning, stabbing pain from my toes to my buttocks. People tell me to relax. I’m in too much pain to relax.
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