I’m a vet ..served on Okinawa and largely escaped the war. I have PN ..Idiopathic. Not much can be done other than exercise to keep my legs strong.
I want to thank you for your service to our country and wish you well as you struggle with you health problems.
@freckle1
Have you tried taking Alpha Lipoic Acid and Acetyl L Carnitine supplements for neuropathy pain? They have helped me with some severe small fiber nerve damage/neuropathy pain. I also use Salonpas brand Lidocaine patches (unscented) and capsaicin nerve pain creams.
@freckle1
Have you tried taking Alpha Lipoic Acid and Acetyl L Carnitine supplements for neuropathy pain? They have helped me with some severe small fiber nerve damage/neuropathy pain. I also use Salonpas brand Lidocaine patches (unscented) and capsaicin nerve pain creams.
Alpha Lipoic Acid has definitely helped some, pregablin helping with none of terrible side effects like Gabapentin did. Haven't tried Acetyl L Carnitine. Solonpas patches didn't help unfortunately. But everyone's body and condition is somewhat different . Trials and Error sadly.
I have been dealing with this condition for almost two years now and although I talked my PC doctor about it, she has not yet addressed concerns to my satisfaction I heard about the mayo hospital online while researching
my condition in my hands and feet. I am at a place where I cannot walk any distance anymore and have trouble sleeping at night because the sensitivity in my feet makes it hard to put cover over my feet. I am still looking for anything that will help ?
I was initially diagnosed with Idiopathic Peripheral Neuropathy more than ten years ago. Four years back I acquired MPA Vasculitis which significantly increased my challenges with this my PN. Up until then I had been blessed in not having to deal with a lot of pain. I have since been prescribed Gabapentin for it. I believe that there is/are other medications that can be prescribed to relieve the pain. One of the things I do is personal research on all of my health problems. I’ll find organizations which support those with the disease along with the occasional older research paper to read. Thank goodness for Google! There is at least one online group which is specifically for those with Peripheral Neuropathy. It can be found at: https://www.foundationforpn.org/our-mission/
They continue to raise funds for research as well as offering online lectures done by medical specialists in the field. I highly recommend spending some time on the site-you may find answers to many of your questions. Lastly, though I’ve not personally had issues with the weight of blankets, etc causing sleep problems, I recall reading at least one person’s method for relief. She had someone help her make up a type of metal frame to raise the bedcovers at the end of her bed. I’ve always envisioned it to look like a three sided tent? I think it may be possible to find others, who can personally offer ideas, with further Google searching and FB groups. I’m sorry that you have drawn this straw in your life and only wish you all of the very best.
You shouldn't have to live with that much pain. bobsconnect mentioned that his doc put him on a fentanyl patch. If I were you I'd ask about that as an option. I've been given fentanyl but only for procedures and it can provide major relief. Of course its a synthetic opioid so they try to steer you away from it. Gabapentin to me is next to useless other than as a sleep aid. Hang in there.
Hi all
I am an RN and have PN due to DM and Sarcoidosis for 25 years. I am now 67. Mine is sensory so pain numbing and burning is my issue after 5pm at night. Currently I am having motor involvement which makes me unsteady. Restless leg too. My only relief is Tramodol
I have been on it for 22 years. 100mg after dinner. It is addictive but I have been on same dose for over 20 years. Also GABA 300mg three times a day. But I only take 600mg at bedtime. Due to dizziness. Neuropathy compression socks help. You can buy them ant amazon. Also try wetting white cotton socks. Wrong them out and freeze them. Then put them on when in pain. It really helps. For me heat makes it worse. Also buy lidocaine cream and message it in before the pain starts. As your MD for lidocaine prescription with maximum strength. The over the counter ones are not strong enough. For OTC, Maximum Aspercreme lidocaine roll on is good. Doesn’t get on your hands. You don’t want it to get transferred. To your eyes or private parts. Owww. Some creams also has capsacian crème. Try going to a reflexology session where they message feet and legs. The Asian places are not expensive and give great relief. I also bought sketcher sneakers. The slip on type with no laces. They even sell dress shoes ! My pain doctor is now suggesting a TENS machine that is implanted to stop nerve pain conduction. I may try it. My friend had relief. Good luck my friends.
Hi all
I am an RN and have PN due to DM and Sarcoidosis for 25 years. I am now 67. Mine is sensory so pain numbing and burning is my issue after 5pm at night. Currently I am having motor involvement which makes me unsteady. Restless leg too. My only relief is Tramodol
I have been on it for 22 years. 100mg after dinner. It is addictive but I have been on same dose for over 20 years. Also GABA 300mg three times a day. But I only take 600mg at bedtime. Due to dizziness. Neuropathy compression socks help. You can buy them ant amazon. Also try wetting white cotton socks. Wrong them out and freeze them. Then put them on when in pain. It really helps. For me heat makes it worse. Also buy lidocaine cream and message it in before the pain starts. As your MD for lidocaine prescription with maximum strength. The over the counter ones are not strong enough. For OTC, Maximum Aspercreme lidocaine roll on is good. Doesn’t get on your hands. You don’t want it to get transferred. To your eyes or private parts. Owww. Some creams also has capsacian crème. Try going to a reflexology session where they message feet and legs. The Asian places are not expensive and give great relief. I also bought sketcher sneakers. The slip on type with no laces. They even sell dress shoes ! My pain doctor is now suggesting a TENS machine that is implanted to stop nerve pain conduction. I may try it. My friend had relief. Good luck my friends.
Welcome @catbeth57, Thanks for sharing what helps with your neuropathy symptoms. I also have neuropathy but mine is idiopathic small fiber PN. I shared my journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. I think one of the best things we can do to help is to become a better advocate for our health by learning as much as we can about neuropathy and what treatments are available. Being an RN, it sounds like you are already doing the learning part and figuring out what might provide relief. I'm not sure if you have seen these sites on neuropathy but thought I would share them with you.
Hi all
I am an RN and have PN due to DM and Sarcoidosis for 25 years. I am now 67. Mine is sensory so pain numbing and burning is my issue after 5pm at night. Currently I am having motor involvement which makes me unsteady. Restless leg too. My only relief is Tramodol
I have been on it for 22 years. 100mg after dinner. It is addictive but I have been on same dose for over 20 years. Also GABA 300mg three times a day. But I only take 600mg at bedtime. Due to dizziness. Neuropathy compression socks help. You can buy them ant amazon. Also try wetting white cotton socks. Wrong them out and freeze them. Then put them on when in pain. It really helps. For me heat makes it worse. Also buy lidocaine cream and message it in before the pain starts. As your MD for lidocaine prescription with maximum strength. The over the counter ones are not strong enough. For OTC, Maximum Aspercreme lidocaine roll on is good. Doesn’t get on your hands. You don’t want it to get transferred. To your eyes or private parts. Owww. Some creams also has capsacian crème. Try going to a reflexology session where they message feet and legs. The Asian places are not expensive and give great relief. I also bought sketcher sneakers. The slip on type with no laces. They even sell dress shoes ! My pain doctor is now suggesting a TENS machine that is implanted to stop nerve pain conduction. I may try it. My friend had relief. Good luck my friends.
I’m experiencing same symptoms as you for about 12 yrs now.
Tramadol helps, Gabapentin did not.
Haven’t tried the socks, but one eve I tried putting ice on my foot where it hurt,and it was so painful I had to take it off.
I use a CBD ointment when pain isn’t too bad,then I wear reg socks,and that will help sometimes.
Haven’t tried compression socks you recommended.
I also suffer from central nerve damage due to an Epidural, using Fenetanyl without my permission, back in 2018.
It has changed my life for the worse, including sever pain in my lower back, which can only be be held if check, for about an hour, by using 2 milligrams of Dilaudid, prescribed by my Doctor here in Canada.
It has led to severe itching, which burns when I touch it, to try and ease the itching.
My fingers in both hands now ache almost constantly, along with pain in my neck.
Other than Dilaudid, there’s nothing else as farad. In know that can help squash the pain and horrible side effects this Epidural caused me. Does anyone else have something that’s legal that works??
Hawk194211
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1 ReactionThank you so very much for your service and to all the Vets here.
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1 Reaction@freckle1
Have you tried taking Alpha Lipoic Acid and Acetyl L Carnitine supplements for neuropathy pain? They have helped me with some severe small fiber nerve damage/neuropathy pain. I also use Salonpas brand Lidocaine patches (unscented) and capsaicin nerve pain creams.
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Like -
Helpful -
Hug
3 ReactionsAlpha Lipoic Acid has definitely helped some, pregablin helping with none of terrible side effects like Gabapentin did. Haven't tried Acetyl L Carnitine. Solonpas patches didn't help unfortunately. But everyone's body and condition is somewhat different . Trials and Error sadly.
-
Like -
Helpful -
Hug
1 ReactionI have been dealing with this condition for almost two years now and although I talked my PC doctor about it, she has not yet addressed concerns to my satisfaction I heard about the mayo hospital online while researching
my condition in my hands and feet. I am at a place where I cannot walk any distance anymore and have trouble sleeping at night because the sensitivity in my feet makes it hard to put cover over my feet. I am still looking for anything that will help ?
-
Like -
Helpful -
Hug
2 ReactionsI was initially diagnosed with Idiopathic Peripheral Neuropathy more than ten years ago. Four years back I acquired MPA Vasculitis which significantly increased my challenges with this my PN. Up until then I had been blessed in not having to deal with a lot of pain. I have since been prescribed Gabapentin for it. I believe that there is/are other medications that can be prescribed to relieve the pain. One of the things I do is personal research on all of my health problems. I’ll find organizations which support those with the disease along with the occasional older research paper to read. Thank goodness for Google! There is at least one online group which is specifically for those with Peripheral Neuropathy. It can be found at: https://www.foundationforpn.org/our-mission/
They continue to raise funds for research as well as offering online lectures done by medical specialists in the field. I highly recommend spending some time on the site-you may find answers to many of your questions. Lastly, though I’ve not personally had issues with the weight of blankets, etc causing sleep problems, I recall reading at least one person’s method for relief. She had someone help her make up a type of metal frame to raise the bedcovers at the end of her bed. I’ve always envisioned it to look like a three sided tent? I think it may be possible to find others, who can personally offer ideas, with further Google searching and FB groups. I’m sorry that you have drawn this straw in your life and only wish you all of the very best.
-
Like -
Helpful -
Hug
4 ReactionsHi all
I am an RN and have PN due to DM and Sarcoidosis for 25 years. I am now 67. Mine is sensory so pain numbing and burning is my issue after 5pm at night. Currently I am having motor involvement which makes me unsteady. Restless leg too. My only relief is Tramodol
I have been on it for 22 years. 100mg after dinner. It is addictive but I have been on same dose for over 20 years. Also GABA 300mg three times a day. But I only take 600mg at bedtime. Due to dizziness. Neuropathy compression socks help. You can buy them ant amazon. Also try wetting white cotton socks. Wrong them out and freeze them. Then put them on when in pain. It really helps. For me heat makes it worse. Also buy lidocaine cream and message it in before the pain starts. As your MD for lidocaine prescription with maximum strength. The over the counter ones are not strong enough. For OTC, Maximum Aspercreme lidocaine roll on is good. Doesn’t get on your hands. You don’t want it to get transferred. To your eyes or private parts. Owww. Some creams also has capsacian crème. Try going to a reflexology session where they message feet and legs. The Asian places are not expensive and give great relief. I also bought sketcher sneakers. The slip on type with no laces. They even sell dress shoes ! My pain doctor is now suggesting a TENS machine that is implanted to stop nerve pain conduction. I may try it. My friend had relief. Good luck my friends.
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Like -
Helpful -
Hug
5 ReactionsWelcome @catbeth57, Thanks for sharing what helps with your neuropathy symptoms. I also have neuropathy but mine is idiopathic small fiber PN. I shared my journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. I think one of the best things we can do to help is to become a better advocate for our health by learning as much as we can about neuropathy and what treatments are available. Being an RN, it sounds like you are already doing the learning part and figuring out what might provide relief. I'm not sure if you have seen these sites on neuropathy but thought I would share them with you.
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
You might also like to scan through a list of the discussions members have created on spinal cord stimulators. Here's a link to the search results - https://connect.mayoclinic.org/search/?search=Spinal%20Cord%20Stimulators
Was it a spinal cord stimulator that your pain doctor recommended?
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2 ReactionsI’m experiencing same symptoms as you for about 12 yrs now.
Tramadol helps, Gabapentin did not.
Haven’t tried the socks, but one eve I tried putting ice on my foot where it hurt,and it was so painful I had to take it off.
I use a CBD ointment when pain isn’t too bad,then I wear reg socks,and that will help sometimes.
Haven’t tried compression socks you recommended.
-
Like -
Helpful -
Hug
3 ReactionsI also suffer from central nerve damage due to an Epidural, using Fenetanyl without my permission, back in 2018.
It has changed my life for the worse, including sever pain in my lower back, which can only be be held if check, for about an hour, by using 2 milligrams of Dilaudid, prescribed by my Doctor here in Canada.
It has led to severe itching, which burns when I touch it, to try and ease the itching.
My fingers in both hands now ache almost constantly, along with pain in my neck.
Other than Dilaudid, there’s nothing else as farad. In know that can help squash the pain and horrible side effects this Epidural caused me. Does anyone else have something that’s legal that works??
Hawk194211
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Hug
3 Reactions