@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.
I take 300 mg of gabapentin 3 times a day. If I miss a dose my feet feel dead. I keep trying supplements because I want to be able to drive again. I'm 80 and life is actually good. Gabapentin kind of acts like a happy pill for me.
I sleep well with a concoction of Benadryl, CBD, ibuprofen, melatonin and half a Trazadone,
Hi, there @raebaby. I am also 80 and keeping my quality of life issues right out front. It looks like you have quite the sleep concoction. I also use a 2:1 CBD/THC medical cannabis at bedtime. It really does the trick for me. And I faced the driving issue by finding relief with MFR (myofascial release). I do need two sessions a week at this point. I am just happy to be able to drive independently. Have you had any experience with MFR?
May you be free of suffering and the causes of suffering.
Chris
Hi, there @raebaby. I am also 80 and keeping my quality of life issues right out front. It looks like you have quite the sleep concoction. I also use a 2:1 CBD/THC medical cannabis at bedtime. It really does the trick for me. And I faced the driving issue by finding relief with MFR (myofascial release). I do need two sessions a week at this point. I am just happy to be able to drive independently. Have you had any experience with MFR?
May you be free of suffering and the causes of suffering.
Chris
Polyneuropathy, all of it non-diabetic. What would you like to know about it? It was caused by mis-identifying of me, in a non-local ERs, back in 1993, and 1994. Once the damage is done, recovery is very slow. Neuropathy is nerve pain and nerve pain usually does not respond well to things like the (usual) recommendation that you take Tylenol or Ibuprophen/Motrin. Try Lyrica (expensive) and/or Gabapentin. Lyrica does work for Fibromyalgia. Gabepentin worked way better from me than Lyrica did, and it's much less cost wise. Cyclobenzaprine or Tizanidine is helpful for chronic musle cramping that often goes hand in hand with nerve pain (neuropathy and polyneuropathy). One should get their spine looked at with neuropathy that's not of the head. Pinched nerves, like stenosis can do the same and is a symptom that needs the cause dealth with. Sometimes dental issues can be the cause of neuropathy of the face, head. Don't disregard possible broken bones as the causes.
I struggle with Small Fiber Neuropathy. It was caused by the sudden discontinued prescription. It took two years to diagnose so treatment has been slow and painful. I do take Gabapentin, but it is unwise because of the side effects. Resting or night time I have the worst pain. Do you experience the same thing at night?
@jchet
What has worked so far - and I think I am only starting on this journey of discovery
I have given up alcohol and caffeine, increased exercise always doing something leg related (walk for an hour, or exercycle).
Supplements.
Alpha-Lipoic Acid 1200mg
Vitamin E
Vitamin B Complex
Magnesium/Calcium
Omega 3 fatty Acid
Vitamin D
Folic Acid
Tumeric
Going to add N-Acetylcysteine
I started having numbness and then needle-like pain and tingling in my feet bout a year ago with the tingling increasing in the past two months or so. Xrays showed some spinal stenosis but the EMG was normal which indicates the neuropathy is not caused by the stenosis. So my doctor said peripheral neuropathy is indicated and will refer me to a neurologist for a diagnosis. He said the best medication to treat pain is Gabapentin but the list of side effects is daunting. My neuropathy is not caused by diabetes. So, for now, I am trying other methods of pain reduction such as tea tree and eucalyptus oils, massage, walking/exercise, etc. Also eating a cleaner diet and drinking lots more water. Time will tell, I guess. I appreciate everyone's posts here as I learn a lot. Thank you.
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What supplements have you found that help with the numbness?
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1 ReactionHi, there @raebaby. I am also 80 and keeping my quality of life issues right out front. It looks like you have quite the sleep concoction. I also use a 2:1 CBD/THC medical cannabis at bedtime. It really does the trick for me. And I faced the driving issue by finding relief with MFR (myofascial release). I do need two sessions a week at this point. I am just happy to be able to drive independently. Have you had any experience with MFR?
May you be free of suffering and the causes of suffering.
Chris
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5 ReactionsThe Mayo connected is helping me so much.So many caring and suffering people in the world.God bless us all.
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3 ReactionsI posted my neuropathy journey story in another discussion here – https://connect.mayoclinic.org/comment/310341/ and in the description at the top of this discussion here – https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/. I think a few others have posted throughout this discussion so it may be helpful to scan through the posts from the start.
@evansjohn007 shared his Protocol 525 story in another discussion here but I'm not sure that he still follows Connect – https://connect.mayoclinic.org/comment/611196/
I have never heard of MFR. I'm going to research it. Thanks!
Polyneuropathy, all of it non-diabetic. What would you like to know about it? It was caused by mis-identifying of me, in a non-local ERs, back in 1993, and 1994. Once the damage is done, recovery is very slow. Neuropathy is nerve pain and nerve pain usually does not respond well to things like the (usual) recommendation that you take Tylenol or Ibuprophen/Motrin. Try Lyrica (expensive) and/or Gabapentin. Lyrica does work for Fibromyalgia. Gabepentin worked way better from me than Lyrica did, and it's much less cost wise. Cyclobenzaprine or Tizanidine is helpful for chronic musle cramping that often goes hand in hand with nerve pain (neuropathy and polyneuropathy). One should get their spine looked at with neuropathy that's not of the head. Pinched nerves, like stenosis can do the same and is a symptom that needs the cause dealth with. Sometimes dental issues can be the cause of neuropathy of the face, head. Don't disregard possible broken bones as the causes.
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Like -
Helpful -
Hug
2 ReactionsI struggle with Small Fiber Neuropathy. It was caused by the sudden discontinued prescription. It took two years to diagnose so treatment has been slow and painful. I do take Gabapentin, but it is unwise because of the side effects. Resting or night time I have the worst pain. Do you experience the same thing at night?
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Helpful -
Hug
1 Reaction@jchet
What has worked so far - and I think I am only starting on this journey of discovery
I have given up alcohol and caffeine, increased exercise always doing something leg related (walk for an hour, or exercycle).
Supplements.
Alpha-Lipoic Acid 1200mg
Vitamin E
Vitamin B Complex
Magnesium/Calcium
Omega 3 fatty Acid
Vitamin D
Folic Acid
Tumeric
Going to add N-Acetylcysteine
-
Like -
Helpful -
Hug
2 ReactionsA note of caution about the B complex: long-term use of vitamin B6 supplements can cause peripheral neuropathy.
I started having numbness and then needle-like pain and tingling in my feet bout a year ago with the tingling increasing in the past two months or so. Xrays showed some spinal stenosis but the EMG was normal which indicates the neuropathy is not caused by the stenosis. So my doctor said peripheral neuropathy is indicated and will refer me to a neurologist for a diagnosis. He said the best medication to treat pain is Gabapentin but the list of side effects is daunting. My neuropathy is not caused by diabetes. So, for now, I am trying other methods of pain reduction such as tea tree and eucalyptus oils, massage, walking/exercise, etc. Also eating a cleaner diet and drinking lots more water. Time will tell, I guess. I appreciate everyone's posts here as I learn a lot. Thank you.
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Like -
Helpful -
Hug
1 Reaction