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rabbit10
@rabbit10

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Joined: Apr 07, 2016

Anyone here dealing with peripheral neuropathy?

Posted by @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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@inspect28

Try drinking to much water. Leg stretching and exercise.

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Also I wear compression socks at night when removing your shoes. Sleep with them and remove in the morning

I have had neuropathy for at least 5 years i have never taken any pills for it. i went to Loma linda in ca.for some treatments that helped a little but nothing great. i have been doing a variety of feet and leg exercises, that did help a little. i was told to go gluten free which also helped somewhat. the neuropathy is now traveling from my feet to my lower legs and is getting worse. my primary doctor said i do not have diabetes. I am wondering if it gets worse if they cut off your feet or legs. i have been thinking about CBD. does anyone out there know about any cures or at least some relief. would appreciate it. thanks

@edwhalen

I have had neuropathy for at least 5 years i have never taken any pills for it. i went to Loma linda in ca.for some treatments that helped a little but nothing great. i have been doing a variety of feet and leg exercises, that did help a little. i was told to go gluten free which also helped somewhat. the neuropathy is now traveling from my feet to my lower legs and is getting worse. my primary doctor said i do not have diabetes. I am wondering if it gets worse if they cut off your feet or legs. i have been thinking about CBD. does anyone out there know about any cures or at least some relief. would appreciate it. thanks

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@edwhalen, Good afternoon Ed. Thanks for becoming a contributor on "Connect". I use Medical Cannabis as my total pain control regimen. Before I launch into options that might have validity for you, would you please tell me if you are in California. You mention Loma Linda and that prompted the query. I look forward to hearing from you, be safe and pain-free today.

@edwhalen

I have had neuropathy for at least 5 years i have never taken any pills for it. i went to Loma linda in ca.for some treatments that helped a little but nothing great. i have been doing a variety of feet and leg exercises, that did help a little. i was told to go gluten free which also helped somewhat. the neuropathy is now traveling from my feet to my lower legs and is getting worse. my primary doctor said i do not have diabetes. I am wondering if it gets worse if they cut off your feet or legs. i have been thinking about CBD. does anyone out there know about any cures or at least some relief. would appreciate it. thanks

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Hello Ed @edwhalen, I would like to add my welcome to Connect along with Chris @artscaping and other members. There is no cure for neuropathy and each of us is a little different in how we are affected. You may be interested in reading through another active discussion here on Connect and meet other members sharing your symptoms.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you able to share how you were diagnosed or any treatments you use that help you with your symptoms? It helps other members relate and share treatments that have worked for them for similar symptoms.

@edwhalen

I have had neuropathy for at least 5 years i have never taken any pills for it. i went to Loma linda in ca.for some treatments that helped a little but nothing great. i have been doing a variety of feet and leg exercises, that did help a little. i was told to go gluten free which also helped somewhat. the neuropathy is now traveling from my feet to my lower legs and is getting worse. my primary doctor said i do not have diabetes. I am wondering if it gets worse if they cut off your feet or legs. i have been thinking about CBD. does anyone out there know about any cures or at least some relief. would appreciate it. thanks

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My experience with Neuropathy:

I got neuropathy the night of my 20th high school reunion over 25 yrs ago. I had stayed up all night blowing up balloons and all day decorating for the event the next night. I had bought cute hard bottom flat shoes that matched my summer dress. I noticed my feet were killing me after the event and I assumed it was from the shoes. But it never got better, only worse to the point I was in tears constantly from the constant pain. The first thing that came to my rescue was the rubber bottom shoes.

Secondly, was finding a doctor and getting the medicine. Having non-diabetic, chronic, neuropathy usually brings the frustration of having a doctor look you in the eye and say, " There is nothing we can really do for it, there is no cure, we don't know what causes it and it's only going to get worse. " Lovely!! They all say the same thing. Once you are tested and find a medicine treatment that works; is better to find a general doctor to just give you the medicine to sabe the cost of a specialist.

I've tried everything through the years. Number one if you are in constant pain ask your doctor for a prescription for Cymbalta Its for neuropathy and it works fabulous. The pain will disappear. And it treats back and knee pain too at the same time. Some people take Lyrica and it might even work better but its number 1 side effect is weight gain and you put it on quickly in the first week or two taking it. And it takes more than 2 weeks to get it off. And older treatment is to take Neurotin. It also works and is cheaper but has a few mild but annoying side effects like brain freezes if you miss a dose or take a doze too late. If your pain is really bad , your neurologist might recommend you taking neurotin with Cymbalta our Lyrica.

Number 2 treatment is only wear shoes with rubber sqwishy bottoms. These are hard to find. The Earth brand at Wal-Mart is good and the more expensive Nike and Sketchers are good. When looking for a shoe pit your fingers in the inside of the show and push down lightly with 2 fingers. If there is an indention and/or spring back rubbery feel there are good. It must have soft rubber and not hard rubber or hard cardboard or plastic bottoms. Heels of any type are out except occasionally you can find a medium platform shoe that gives you height. Under no condition go barefoot or stand barefoot on hard wood floors.

If your feet get too cold; stop up your tub and stand in as hot of water that you can in the tub. The longer you have neuropathy the more your feet will continue to sting, hurt and go numb. The more you can massage your feet with a lotion that is cool, has menthal or pepperment in it. The more you keep the circulation moving the better. I have tried every lotion known to man and i have found they all work about the same. My favorite choice is keep a small bottle of antibacterial gel in your pocket book or by your night stand. Works as good if not better than everything out there.

Some people will get RLS (Restless Leg Syndrome) from taking any medicine for neuropathy. If this is the case then you will need to take RLS medicine, usually Requip or Merapex. Both of these meds tend to stop working after a year or 2 so you will have to switch to the other one when that happens. I personal like Merapex better and it lasts a few years longer before i have to switch to Equip or stay off of it a week to get it to start working àgain. For me, I take these 2 medicines and a anti-acid pill (these meds cause intergestion if I don't) over the counter at 4 pm. I have to take them at 4pm so they have time to work before bed time. Of I'm late taking them at bedtime or after take them immediately because for me the RLS medicine won't work. In that case, i have to take a half of a hydrocodeine to stop the RLS. If zi take everything correctly and wear the correct shoes, I usually don't have any pain.

Note: I would like to add here that after years of researching this and experiencing it first hand…..I do believe that it is possibly caused by dormant Lymne Disease. (Being bit by a tick at some point in your past.) I say this because 4 out of 5 of my family members were bit by ticks at a certain points in their lives and the same 4 out of 5 bitten have feet problems. In our cases, the neuropathy started anywhere from 3 months to a year after being bitten; although there are many cases of starting years after a tick bite.

Hi @bellapamela, welcome to Mayo Clinic Connect. Thank you for sharing what helps you. I think it's great that we can all share what helps with the symptoms of neuropathy. I've had small fiber PN for 20+ years but am fortunate in that I only have numbness in my feet and ankles and no pain. I also have done a lot of research and spent a lot of money on products that are of dubious value addressing neuropathy. You really do have to be your own advocate and do your own research. I have found some over the counter vitamins and supplements that help me but may or may not work for others. My story of what helps me and how I found it is in an earlier post on Connect here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@johnbishop

Hello @brucea, welcome to Mayo Clinic Connect. I have small fiber PN in my feet and ankles but no pain, only numbness. I was diagnosed at Mayo Clinic Rochester but I'm guessing you are trying to find a specialist or neurologist close. I did a quick search and found a few possibilities that may be OK but I'm hoping someone in the area can offer a suggestion.

The Peripheral Neuropathy Center at New York-Presbyterian Hospital/Weill Cornell Medicine
https://neuropathy.weillcornell.org/our-physicians/

Columbia University Department of Neurology
http://columbianeurology.org/patient-care/peripheral-neuropathies

Have you been given a specific diagnosis?

John

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Hi John. Thanks for your help. Yes I am looking for a specialist in the NYC area. I really want someone who is not run-of-the-mill. My current and useless neurologist said the small nerves (fibers?) in my feet are shot. I need someone to help mitigate the pain and numbness and to help me with my walking.

@brucea

Hi John. Thanks for your help. Yes I am looking for a specialist in the NYC area. I really want someone who is not run-of-the-mill. My current and useless neurologist said the small nerves (fibers?) in my feet are shot. I need someone to help mitigate the pain and numbness and to help me with my walking.

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Dr Elana Frid, neurologist, nyc. Expensive, good nut doesn't take insurance.

@bellapamela

My experience with Neuropathy:

I got neuropathy the night of my 20th high school reunion over 25 yrs ago. I had stayed up all night blowing up balloons and all day decorating for the event the next night. I had bought cute hard bottom flat shoes that matched my summer dress. I noticed my feet were killing me after the event and I assumed it was from the shoes. But it never got better, only worse to the point I was in tears constantly from the constant pain. The first thing that came to my rescue was the rubber bottom shoes.

Secondly, was finding a doctor and getting the medicine. Having non-diabetic, chronic, neuropathy usually brings the frustration of having a doctor look you in the eye and say, " There is nothing we can really do for it, there is no cure, we don't know what causes it and it's only going to get worse. " Lovely!! They all say the same thing. Once you are tested and find a medicine treatment that works; is better to find a general doctor to just give you the medicine to sabe the cost of a specialist.

I've tried everything through the years. Number one if you are in constant pain ask your doctor for a prescription for Cymbalta Its for neuropathy and it works fabulous. The pain will disappear. And it treats back and knee pain too at the same time. Some people take Lyrica and it might even work better but its number 1 side effect is weight gain and you put it on quickly in the first week or two taking it. And it takes more than 2 weeks to get it off. And older treatment is to take Neurotin. It also works and is cheaper but has a few mild but annoying side effects like brain freezes if you miss a dose or take a doze too late. If your pain is really bad , your neurologist might recommend you taking neurotin with Cymbalta our Lyrica.

Number 2 treatment is only wear shoes with rubber sqwishy bottoms. These are hard to find. The Earth brand at Wal-Mart is good and the more expensive Nike and Sketchers are good. When looking for a shoe pit your fingers in the inside of the show and push down lightly with 2 fingers. If there is an indention and/or spring back rubbery feel there are good. It must have soft rubber and not hard rubber or hard cardboard or plastic bottoms. Heels of any type are out except occasionally you can find a medium platform shoe that gives you height. Under no condition go barefoot or stand barefoot on hard wood floors.

If your feet get too cold; stop up your tub and stand in as hot of water that you can in the tub. The longer you have neuropathy the more your feet will continue to sting, hurt and go numb. The more you can massage your feet with a lotion that is cool, has menthal or pepperment in it. The more you keep the circulation moving the better. I have tried every lotion known to man and i have found they all work about the same. My favorite choice is keep a small bottle of antibacterial gel in your pocket book or by your night stand. Works as good if not better than everything out there.

Some people will get RLS (Restless Leg Syndrome) from taking any medicine for neuropathy. If this is the case then you will need to take RLS medicine, usually Requip or Merapex. Both of these meds tend to stop working after a year or 2 so you will have to switch to the other one when that happens. I personal like Merapex better and it lasts a few years longer before i have to switch to Equip or stay off of it a week to get it to start working àgain. For me, I take these 2 medicines and a anti-acid pill (these meds cause intergestion if I don't) over the counter at 4 pm. I have to take them at 4pm so they have time to work before bed time. Of I'm late taking them at bedtime or after take them immediately because for me the RLS medicine won't work. In that case, i have to take a half of a hydrocodeine to stop the RLS. If zi take everything correctly and wear the correct shoes, I usually don't have any pain.

Note: I would like to add here that after years of researching this and experiencing it first hand…..I do believe that it is possibly caused by dormant Lymne Disease. (Being bit by a tick at some point in your past.) I say this because 4 out of 5 of my family members were bit by ticks at a certain points in their lives and the same 4 out of 5 bitten have feet problems. In our cases, the neuropathy started anywhere from 3 months to a year after being bitten; although there are many cases of starting years after a tick bite.

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Interesting … I, too, have RLS as well as Neuropathy (acute sensory neuropathy). My neurologist and my new pharmacist both have RLS but not neuropathy, they take Lyrica 150 twice a day. Peggy

@pfbacon

Interesting … I, too, have RLS as well as Neuropathy (acute sensory neuropathy). My neurologist and my new pharmacist both have RLS but not neuropathy, they take Lyrica 150 twice a day. Peggy

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Lyrics is good as long as you can tolerate it.

Hi! I started with peripheral neuropathy about a year ago, right after a lumpectomy. Had radiation during the lumpectomy, and I think perhaps that had something to do with it, but I will never know for sure. My neuropathy involves sensory nerves, so I am in pain a good deal of the time. The balls of my feet and toes burn, throb, jab, stab…no fun at all. Horrid, actually. Shoes feel like they have stones, cotton, socks, rocks, stuffed in them. I try to cope as best I can, but never easy. On Gabapentin, Duloxetine, Topomax. They help, but not great. Use CBD salves and drops, which are a Godsend. Use Lidocaine Patches, which help immensely. Read a lot. Keep busy with friends. Live with pain in the background a lot. What can I do? Pray a lot.

I just wanted to let everyone on this thread know that my PN is mostly completely gone, and that a chiropractor was the one who helped me. He did “scraping” on my calves because he said the calf muscles were so tight they were impinging on my nerves. I was better immediately! The PN had been getting increasingly worse, progressing quickly. It is 98% gone now! I also think the pelvic adjustments help.

@julchilds

I just wanted to let everyone on this thread know that my PN is mostly completely gone, and that a chiropractor was the one who helped me. He did “scraping” on my calves because he said the calf muscles were so tight they were impinging on my nerves. I was better immediately! The PN had been getting increasingly worse, progressing quickly. It is 98% gone now! I also think the pelvic adjustments help.

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Congratulations! Your very lucky. I went to a chiropractor for 13 weeks (twice a week) during which I placed my feet on a vibrating pad for 5 minutes then sat in a chair, legs raised to have a fluctuating, vibrating laser flash on my legs from the knees down for 15 minutes. It didn't help. My feet still get hot, cold and numb but my more frustrating problem is the way it has effected my balance.

@julchilds and @dutchman09 – I think the scraping of the calves must be similar to Myofascial Release Therapy but I'm not sure.

@julchilds

I just wanted to let everyone on this thread know that my PN is mostly completely gone, and that a chiropractor was the one who helped me. He did “scraping” on my calves because he said the calf muscles were so tight they were impinging on my nerves. I was better immediately! The PN had been getting increasingly worse, progressing quickly. It is 98% gone now! I also think the pelvic adjustments help.

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Where was your pain? I have never heard of scraping calves before. Can you tell more about this treatment? Thanks, Lori Renee

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