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rabbit10
@rabbit10

Posts: 36
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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@johnbishop

Hello @paulfj067 — Welcome to Connect. I'm glad you found us. I have idiopathic small fiber PN but only have numbness with mine in the feet to just above the ankles. I've been dealing with PN for 20+ years. If you have any questions about how to do something on Connect, there is a great Get Started on Connect guide link at the bottom of each page on Connect in the left column.

@paulfj067 can you share a little more about your peripheral neuropathy and if you have found any treatments that work for you?

John

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Hi John, I have found that Doctors just want to throw drugs to deal with PN. In my opinion the side affects are worse that the issue. I have tried Lyrica only to feel like I have been run over by a truck. The way I manage is with a wheat bag that I constantly heat up in the microwave. This method helps a little, that is all. I would love to know a direction to go in. I am really over it that’s for sure.

@paulfj067

Hi John, I have found that Doctors just want to throw drugs to deal with PN. In my opinion the side affects are worse that the issue. I have tried Lyrica only to feel like I have been run over by a truck. The way I manage is with a wheat bag that I constantly heat up in the microwave. This method helps a little, that is all. I would love to know a direction to go in. I am really over it that’s for sure.

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Hi Paul @paulfj067 , I agree with you but it's just my opinion and I have no medical background or training. Also, I only have numbness with my PN. I found something that works for me and has worked for others who also have pain with their PN. I don't know if it will work for you but it's an alternative to drugs. I decided to try it after a lot of research on my own and also the fact there are no drugs or topicals that work to get rid of numbness, I've tried them all. Drugs do nothing to fix or repair damaged nerves which is the cause of the pain and numbness. The drugs just block or mask the pain in your brain so you don't feel it and they come with some major side effects. You can read my story here if you want to give it a try:

https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

John

@hosta

barbarn. I pray that you find some relief from your pain. I to have restless leg syndrome and it is under control now!

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@hosta – what did you do to control the restless leg? Something specific? or perhaps a by-product of other drugs you take?

@johnbishop

Hi Paul @paulfj067 , I agree with you but it's just my opinion and I have no medical background or training. Also, I only have numbness with my PN. I found something that works for me and has worked for others who also have pain with their PN. I don't know if it will work for you but it's an alternative to drugs. I decided to try it after a lot of research on my own and also the fact there are no drugs or topicals that work to get rid of numbness, I've tried them all. Drugs do nothing to fix or repair damaged nerves which is the cause of the pain and numbness. The drugs just block or mask the pain in your brain so you don't feel it and they come with some major side effects. You can read my story here if you want to give it a try:

https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

John

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Hi John, I am willing to give anything a try within reason. Thankyou so much for your prompt reply.

@paulfj067

Hi John, I am willing to give anything a try within reason. Thankyou so much for your prompt reply.

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Hi Paul @paulfj067 — hope it works for you also. Just make sure you read through all of the new member info for the closed Facebook group. It will help you understand what each part of the protocol of supplements is doing and help you understand it a little better. If you search the Facebook group using the phrase "#theprotocolworks" you will find all of the member success stories.

Good luck!
John

Research Alpha Lipoic Acid and Acetyl L-Carnitine for neuropathy. Good luck!

@thasos1

Research Alpha Lipoic Acid and Acetyl L-Carnitine for neuropathy. Good luck!

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Hi @thasos1, I agree. Both are essential and part of the list of the protocol of supplements I take. Just an FYI — Not all ALA is the same though – most of the over the counter stuff doesn't help with neuropathy. More info available here:
https://lpi.oregonstate.edu/mic/dietary-factors/lipoic-acid

@johnbishop

Hi @thasos1, I agree. Both are essential and part of the list of the protocol of supplements I take. Just an FYI — Not all ALA is the same though – most of the over the counter stuff doesn't help with neuropathy. More info available here:
https://lpi.oregonstate.edu/mic/dietary-factors/lipoic-acid

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Thanks John! I’ll check it out.

@johnbishop

Hi Paul @paulfj067 — hope it works for you also. Just make sure you read through all of the new member info for the closed Facebook group. It will help you understand what each part of the protocol of supplements is doing and help you understand it a little better. If you search the Facebook group using the phrase "#theprotocolworks" you will find all of the member success stories.

Good luck!
John

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@paulfj067 Just a little something to remember. Every bit of whatever that creates neuropathy attacks a different part of the nerve network. There is no one thing that will deal with it all, and a lot of stuff out there that will do no good. And all manner of stuff from diabetes to several thousand types of amyloidosis, and chemicals and heat and allergies that cause it, and each has its own pattern. The best thing you can do generally is to relax, take it easy, and do your own research.

@oldkarl

@paulfj067 Just a little something to remember. Every bit of whatever that creates neuropathy attacks a different part of the nerve network. There is no one thing that will deal with it all, and a lot of stuff out there that will do no good. And all manner of stuff from diabetes to several thousand types of amyloidosis, and chemicals and heat and allergies that cause it, and each has its own pattern. The best thing you can do generally is to relax, take it easy, and do your own research.

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Hi @oldkarl and @paulfj067 – What Old Karl said is a really good thing to remember. Add to that we are each different in what works and what doesn't work probably related to all the other things mentioned. Doing your own research is key – and sharing it with your Connect friends is also key for us! There are a lot of folks, companies, etc. making money off of different neuropathy "fixes" which are of dubious value. Some good places to review when making decisions on what to try or not to try…

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

John

@barbarn

@hosta – what did you do to control the restless leg? Something specific? or perhaps a by-product of other drugs you take?

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@barbarn– I was on Requip for several years then my new neurologist put me on Phampexol 0.5 MG. I take 1 in the morning and 2 at bedtime. It works really well most of the time. I also take Gabapentin 300 MG 3 at bedtime for the shingle pain in the left leg. If I could only find something for the back pain, I would be a new person! Ha. I read other people's posts and then I know that I am blessed. God Bless and good luck!

Liked by barbarn

@sophia86

Sophia86. I have been getting worse with numb feet for the past.15 years or longer. Now am not driving my car because my feet have gotten so numb. I want to get better so I can drive car again, Ali.

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Sophia86, I hate to sound so negative, but I've never heard of anyone recovering from the nerve damage of neuropathy, especially when you've had it for so long. When I lost feeling in both legs and feet last year, I had to stop driving, but was determined to find a way to get back to driving. My answer is the Kempf electronic hand controls that I had installed on my little Prius C. Since getting back the car with the Kempf equipment in late July, I've driven almost 2,000 miles, including a roundtrip from Springfield, MO, to Rochester, MN. My advice is to get a doctor to prescribe a Driving Evaluation. From there, you decide what will work for you. I found that the mechanical equipment I tried was not the answer for me, but when I tried the electronic equipment, I found it so intuitive that I was comfortable with it after five minutes. It's expensive, but so very worth it. The photo shows the new equipment on my car. Incidentally, I'm 80 years old.

2013PriusC

@danm I too find that I tend to be pretty good until late afternoon when the pain in my legs, around my knees and in my thighs becomes really intense. I've been taking 400 mg or Gabapentin 3 times a day, and usually take 100 mg of Tramadol when the leg pain starts. The pain continues well into the night, but I've found some relief by lying in bed or sitting up in bed reading or watching movies on my iPad, with a heating pad on my legs and more Tramadol. It seems to be important to have the legs straight. Whatever works!!!

Pain appears to be one of the many joys of life that we all get to share, why? is the $64,000 question. Oh, it's the 64 million dollar question now. It has something to do with the way our bodies are wired and what is shorting out. Mine is from the 2 strokes I had, others are from shingles, others from surgery, others diabetes, still others from a fall/accident. There are so many reasons that we have neuropathic pain as there are sands on the beach. Now if we could get the "kids" today interested in working on the mysteries of the human body instead of "playing" games on their "phones" we would not be hurting like we are.

As much as doctors want to help they are just as much in the dark as to why we are in pain as we are. If they could figure out the why's? they'd be so well known, and rich, that they would have to live on that desert inland out in the middle of the ocean. Medicine has come so far in just the last 50 years, and I believe that if we can do our part by informing our doctors what meds work and do not work that the next generation will not have to go through the pain (hell) we are.

May your tomorrows be better than your todays.
mlmcg

@steeldove

@danm I too find that I tend to be pretty good until late afternoon when the pain in my legs, around my knees and in my thighs becomes really intense. I've been taking 400 mg or Gabapentin 3 times a day, and usually take 100 mg of Tramadol when the leg pain starts. The pain continues well into the night, but I've found some relief by lying in bed or sitting up in bed reading or watching movies on my iPad, with a heating pad on my legs and more Tramadol. It seems to be important to have the legs straight. Whatever works!!!

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I have been told by many Medical people that the pain is almost always worst when the sun goes down and late at night. Not sure why, same reason reseach shows that people diem have more pain and more babies are born in the late hours of the day. I am currently on 88mg gabapenten with 50 mg of tramadol every 6 hrs and to stay out of extreme pain in my feet calves and hands I have to keep this schedule. I have tried to make it longer in between but pay for later. I try to go longer because the gabapenten keeps geeting more expensive and now tramadol is considered an antioid…I wonder if any of these people have to deal with pain? I thnk no…it is all about politics…I started out with 200mg of gaba +tram and have advanced to this larger dosage. I pray every day and research all I can for an answer…if you find one PLEASE tell me?
Peace & Hope always…JJ

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