Yes, have auto immune neuropathy cidp. Hands and feet unbearable pain. Took very long to diagnose.. Came on after a broken ankle surgery..
Orthopedist thought it was nerve damage from surgery, but spread to opposite foot leg and hands. Had surgery, spinal taps, cat scans, mris, electrical studies. Finally diagnosed at Cornell Weil in manhattan. Was in a wheelchair by then. Was put on intravenous Ivig immunoglobulins every 2 weeks for 2 yrs. lost all motor and sensory in lower legs feet, and hands. I can walk again after much PT, immunoglobulin Iv and time to re myelinated the peripheral nerves. I was a health practitioner 25 yrs prior to my ankle fracture. Now, I can't work at all. My life has become confined and depressing.
My mom, why taking care of me had a major stroke. I tried gaba, neuron tin, lyrica, cbd oil, medical marijuana, now legal in New York but very expensive in liquid form. None of it has done much to decrease the constant tingling, burning, tightness, spasms,numbness. Has anyone tried the supplements with the b vitamins, alpha lipoid acid, turmeric, scull cap, omega 3 ? Has anyone tried ,laser treatments, acupuncture, anything?
Does anyone have a comfortable shoe or slipper? I tried at least 20 shoes. Lems are the only brand I can wear and not have to cut up.
I guess this is all.....my neurologists are pleased that I can walk again, and I will continue the immunoglobulin I've, but my quality of life
Is slim to none. Can't go anywhere without counting the minutes until I can take my shoes off. I am open to any suggestions, will go any where in the world for relief. Thank you
Yes, have auto immune neuropathy cidp. Hands and feet unbearable pain. Took very long to diagnose.. Came on after a broken ankle surgery..
Orthopedist thought it was nerve damage from surgery, but spread to opposite foot leg and hands. Had surgery, spinal taps, cat scans, mris, electrical studies. Finally diagnosed at Cornell Weil in manhattan. Was in a wheelchair by then. Was put on intravenous Ivig immunoglobulins every 2 weeks for 2 yrs. lost all motor and sensory in lower legs feet, and hands. I can walk again after much PT, immunoglobulin Iv and time to re myelinated the peripheral nerves. I was a health practitioner 25 yrs prior to my ankle fracture. Now, I can't work at all. My life has become confined and depressing.
My mom, why taking care of me had a major stroke. I tried gaba, neuron tin, lyrica, cbd oil, medical marijuana, now legal in New York but very expensive in liquid form. None of it has done much to decrease the constant tingling, burning, tightness, spasms,numbness. Has anyone tried the supplements with the b vitamins, alpha lipoid acid, turmeric, scull cap, omega 3 ? Has anyone tried ,laser treatments, acupuncture, anything?
Does anyone have a comfortable shoe or slipper? I tried at least 20 shoes. Lems are the only brand I can wear and not have to cut up.
I guess this is all.....my neurologists are pleased that I can walk again, and I will continue the immunoglobulin I've, but my quality of life
Is slim to none. Can't go anywhere without counting the minutes until I can take my shoes off. I am open to any suggestions, will go any where in the world for relief. Thank you
Hi @pammy922, welcome to Connect. It sounds like you have a lot on your plate to deal with but I can tell you that you are not alone. I think we've all tried a multitude of shoes. I found the ones I like were Sketchers slip-ons but they do not offer much side support so I have to be careful using them for balance problems. I also struggled with socks and found that bamboo thread socks were really soft, comfortable and very easy to put on and take off.
I take over the counter supplements that I found in a closed group on Facebook that helps me and has also helped others that were in a lot of pain with their neuropathy. It may or may not work for you but it's worth a try if nothing else has provided relief. I have links to the group in an earlier post where I shared my neuropathy story here:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
@artscaping and @jenniferhunter have shared some great information on dealing with pain in many of their posts. I'm hoping they might have some suggestions for you.
@pammy922 it sounds like you have made significant progress being able to walk again. What is the biggest thing that would help improve your quality of life?
Hi @pammy922, welcome to Connect. It sounds like you have a lot on your plate to deal with but I can tell you that you are not alone. I think we've all tried a multitude of shoes. I found the ones I like were Sketchers slip-ons but they do not offer much side support so I have to be careful using them for balance problems. I also struggled with socks and found that bamboo thread socks were really soft, comfortable and very easy to put on and take off.
I take over the counter supplements that I found in a closed group on Facebook that helps me and has also helped others that were in a lot of pain with their neuropathy. It may or may not work for you but it's worth a try if nothing else has provided relief. I have links to the group in an earlier post where I shared my neuropathy story here:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
@artscaping and @jenniferhunter have shared some great information on dealing with pain in many of their posts. I'm hoping they might have some suggestions for you.
@pammy922 it sounds like you have made significant progress being able to walk again. What is the biggest thing that would help improve your quality of life?
Hello john, i just joined this and also have neuropothy stemming from agent orange. I take lyrica but dont like it because it causes me to sleep super deep and excess hours. Trying CBD now with no effect but ive been 100% off sugar for a couple weeks and i believe it has lessened th acuteness. Rob
Hello john, i just joined this and also have neuropothy stemming from agent orange. I take lyrica but dont like it because it causes me to sleep super deep and excess hours. Trying CBD now with no effect but ive been 100% off sugar for a couple weeks and i believe it has lessened th acuteness. Rob
Hi Rob @ospreysurf, welcome! I'm glad you found us. It's good to be off sugar for many different reasons not only neuropathy ☺ Alcohol also is not good when you have neuropathy. If you are interested in trying over the counter vitamins and supplements, you might be interested in checking out the website for the closed Facebook group where I found what I use - http://solutions2pnpd.com/. It's a lot of reading but it has helped a lot of people. The group has about 8,000 members now with all different types of neuropathy. It may or may not work for you but it's an all natural solution - no drugs and a lot of members have been able to taper off of pain drugs after taking the supplements.
Hi Rob @ospreysurf, welcome! I'm glad you found us. It's good to be off sugar for many different reasons not only neuropathy ☺ Alcohol also is not good when you have neuropathy. If you are interested in trying over the counter vitamins and supplements, you might be interested in checking out the website for the closed Facebook group where I found what I use - http://solutions2pnpd.com/. It's a lot of reading but it has helped a lot of people. The group has about 8,000 members now with all different types of neuropathy. It may or may not work for you but it's an all natural solution - no drugs and a lot of members have been able to taper off of pain drugs after taking the supplements.
@stulerner, just scroll to the top of the discussion and click +Follow -- it will change to Following and you will receive an email notification whenever someone posts to the discussion.
See the "Get Started on Connect" users guide to learn how to perform other tasks on Connect. There is a link to the guide at the bottom of every page on Connect in the lower left hand column. There is another discussion you might find helpful here:
John
I am learning much from those on this site. Thanks to all for sharing. Can someone say more about b12 and PN and the alcohol and sugar connections. Also I had to change all work shoes to soft — the closest to a dress shoe I can wear with suites in a Florsheim “comfort tech” Instead of being caught at work with no shoes on I can tolerate these for a few hours at a time. Feet are still severely painful but these shoes are doable.
Lyrica is harsh to take and work. How do you get by with the effect on speech and memory?! Take care michael
Hi. I suffer from Peripheral Neuropathy. I tried Lyrica and Gabapentin. I had side effects from both so I stopped taking those meds. My Rheumatologist put me on 10 my if Notryptoline because I wasn't sleeping because if the pain. In addition to that I also started taking Alpha Lipoic Acid (vitamin supplement) and Vitamin D3. After just a week I noticed a significant decrease in the stabbing burning pain! If you have a rheumatologist you may want to talk to him or her first to see if this protocol might be beneficial for you. Oh I also got a Homedic foot massager for Christmas which feel a really good on the arches of my feet!
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Many of you have crossed paths with @thankful in the Neuropathy group. Check out today's member spotlight and learn a bit more about him.
– Fly Fishing, Gardening and the Northwest: Meet @thankful https://connect.mayoclinic.org/page/about-connect/newsfeed/fly-fishing-gardening-and-the-northwest-meet-thankful/
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1 ReactionYes, have auto immune neuropathy cidp. Hands and feet unbearable pain. Took very long to diagnose.. Came on after a broken ankle surgery..
Orthopedist thought it was nerve damage from surgery, but spread to opposite foot leg and hands. Had surgery, spinal taps, cat scans, mris, electrical studies. Finally diagnosed at Cornell Weil in manhattan. Was in a wheelchair by then. Was put on intravenous Ivig immunoglobulins every 2 weeks for 2 yrs. lost all motor and sensory in lower legs feet, and hands. I can walk again after much PT, immunoglobulin Iv and time to re myelinated the peripheral nerves. I was a health practitioner 25 yrs prior to my ankle fracture. Now, I can't work at all. My life has become confined and depressing.
My mom, why taking care of me had a major stroke. I tried gaba, neuron tin, lyrica, cbd oil, medical marijuana, now legal in New York but very expensive in liquid form. None of it has done much to decrease the constant tingling, burning, tightness, spasms,numbness. Has anyone tried the supplements with the b vitamins, alpha lipoid acid, turmeric, scull cap, omega 3 ? Has anyone tried ,laser treatments, acupuncture, anything?
Does anyone have a comfortable shoe or slipper? I tried at least 20 shoes. Lems are the only brand I can wear and not have to cut up.
I guess this is all.....my neurologists are pleased that I can walk again, and I will continue the immunoglobulin I've, but my quality of life
Is slim to none. Can't go anywhere without counting the minutes until I can take my shoes off. I am open to any suggestions, will go any where in the world for relief. Thank you
-
Like -
Helpful -
Hug
1 ReactionHi @pammy922, welcome to Connect. It sounds like you have a lot on your plate to deal with but I can tell you that you are not alone. I think we've all tried a multitude of shoes. I found the ones I like were Sketchers slip-ons but they do not offer much side support so I have to be careful using them for balance problems. I also struggled with socks and found that bamboo thread socks were really soft, comfortable and very easy to put on and take off.
I take over the counter supplements that I found in a closed group on Facebook that helps me and has also helped others that were in a lot of pain with their neuropathy. It may or may not work for you but it's worth a try if nothing else has provided relief. I have links to the group in an earlier post where I shared my neuropathy story here:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
@artscaping and @jenniferhunter have shared some great information on dealing with pain in many of their posts. I'm hoping they might have some suggestions for you.
@pammy922 it sounds like you have made significant progress being able to walk again. What is the biggest thing that would help improve your quality of life?
Hello john, i just joined this and also have neuropothy stemming from agent orange. I take lyrica but dont like it because it causes me to sleep super deep and excess hours. Trying CBD now with no effect but ive been 100% off sugar for a couple weeks and i believe it has lessened th acuteness. Rob
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1 ReactionHi Rob @ospreysurf, welcome! I'm glad you found us. It's good to be off sugar for many different reasons not only neuropathy ☺ Alcohol also is not good when you have neuropathy. If you are interested in trying over the counter vitamins and supplements, you might be interested in checking out the website for the closed Facebook group where I found what I use - http://solutions2pnpd.com/. It's a lot of reading but it has helped a lot of people. The group has about 8,000 members now with all different types of neuropathy. It may or may not work for you but it's an all natural solution - no drugs and a lot of members have been able to taper off of pain drugs after taking the supplements.
John
How do I join this neuropathy group
@stulerner, just scroll to the top of the discussion and click +Follow -- it will change to Following and you will receive an email notification whenever someone posts to the discussion.
See the "Get Started on Connect" users guide to learn how to perform other tasks on Connect. There is a link to the guide at the bottom of every page on Connect in the lower left hand column. There is another discussion you might find helpful here:
Groups > Just Want to Talk > Search - It can help you!
-- https://connect.mayoclinic.org/discussion/search-it-can-help-you/
John
I am learning much from those on this site. Thanks to all for sharing. Can someone say more about b12 and PN and the alcohol and sugar connections. Also I had to change all work shoes to soft — the closest to a dress shoe I can wear with suites in a Florsheim “comfort tech” Instead of being caught at work with no shoes on I can tolerate these for a few hours at a time. Feet are still severely painful but these shoes are doable.
Lyrica is harsh to take and work. How do you get by with the effect on speech and memory?! Take care michael
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2 ReactionsLyrica freaked me out the first day, and was only taking 1/2 recommend dose. Stopped in less than 24 hours
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1 ReactionHi. I suffer from Peripheral Neuropathy. I tried Lyrica and Gabapentin. I had side effects from both so I stopped taking those meds. My Rheumatologist put me on 10 my if Notryptoline because I wasn't sleeping because if the pain. In addition to that I also started taking Alpha Lipoic Acid (vitamin supplement) and Vitamin D3. After just a week I noticed a significant decrease in the stabbing burning pain! If you have a rheumatologist you may want to talk to him or her first to see if this protocol might be beneficial for you. Oh I also got a Homedic foot massager for Christmas which feel a really good on the arches of my feet!
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2 Reactions