Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@notborntoburn

Hello I am new to this group but feel so grateful to find you burning friends,my PN has no relief I have been searching for over 12 yrs,shoes,medicine,I am starting the Ketamine infusions this week,once a week for a month.

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Hello @notborntoburn, welcome to Connect. I'm glad you found this group where you can share your symptoms, ask questions and learn what others are doing for treatments. 12 years is indeed a long journey trying to find something that helps with your neuropathy. I've had neuropathy 20+ years but I don't have the pain. I only have numbness with mine. I waited until a few years ago to get diagnosed and I was diagnosed with idiopathic small fiber peripheral neuropathy. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You may also be interested in the following discussions on Connect:

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Can I ask what type of neuropathy you have and other treatments you've tried?

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@notborntoburn

Hello I am new to this group but feel so grateful to find you burning friends,my PN has no relief I have been searching for over 12 yrs,shoes,medicine,I am starting the Ketamine infusions this week,once a week for a month.

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I'm new here, too. I've been considering Ketamine. Keep us informed how it's goes, ok?

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@johnbishop

Hello @notborntoburn, welcome to Connect. I'm glad you found this group where you can share your symptoms, ask questions and learn what others are doing for treatments. 12 years is indeed a long journey trying to find something that helps with your neuropathy. I've had neuropathy 20+ years but I don't have the pain. I only have numbness with mine. I waited until a few years ago to get diagnosed and I was diagnosed with idiopathic small fiber peripheral neuropathy. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You may also be interested in the following discussions on Connect:

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Can I ask what type of neuropathy you have and other treatments you've tried?

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I have PN no specific cause,it was first treated as restless legs about 12yrs ago. I began the route of Lyrica,Cymblata,Neurotin,all the antidepressants,neurological medications,alcohol injections between the toes(that was really fun!)acupuncture,surgery for nerve compression. There is nothing, no vitamins,herbs,lotions,potions, walking that stops it but I just will not trying!

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@deedee46

I'm new here, too. I've been considering Ketamine. Keep us informed how it's goes, ok?

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HI,I start on Wed April24 and continue every Wed. for four weeks. I had 2 Ketamine infusions in the past but they were very low doses,I am not real clear on the protocol,we are in new territory! I do not remember what it is like to walk without pain. Take Care

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@notborntoburn

HI,I start on Wed April24 and continue every Wed. for four weeks. I had 2 Ketamine infusions in the past but they were very low doses,I am not real clear on the protocol,we are in new territory! I do not remember what it is like to walk without pain. Take Care

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I know this sounds weird but in Winter when my feet are burning hot (usually when I try to go to sleep) I'll go stand barefoot on our deck in the snow for a few minutes. I have large ice packs in the freezer when needed. Please don't anyone tell me this isn't good for my feet…I dont know what else to try.

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@notborntoburn

HI,I start on Wed April24 and continue every Wed. for four weeks. I had 2 Ketamine infusions in the past but they were very low doses,I am not real clear on the protocol,we are in new territory! I do not remember what it is like to walk without pain. Take Care

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Good luck and let us know how things work out!
Ronnie

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@deedee46

I know this sounds weird but in Winter when my feet are burning hot (usually when I try to go to sleep) I'll go stand barefoot on our deck in the snow for a few minutes. I have large ice packs in the freezer when needed. Please don't anyone tell me this isn't good for my feet…I dont know what else to try.

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Hi @deedee46 — have you seen the following discussion on burning feet syndrome? You might want to join in the discussion and meet other members talking about burning feet.

> Groups > Brain & Nervous System > Burning Feet syndrome
https://connect.mayoclinic.org/discussion/burning-feet-syndrome/

Do you think your symptoms might be caused by any of the possible causes here?
http://www.mayoclinic.org/symptoms/burning-feet/basics/causes/sym-20050809

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Yes, my feet tingle all the time. Please let me know the supplements and any over the counter medication I can take. This tingling makes me crazy. Thank you for your help.

Patsy

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@deedee46

I know this sounds weird but in Winter when my feet are burning hot (usually when I try to go to sleep) I'll go stand barefoot on our deck in the snow for a few minutes. I have large ice packs in the freezer when needed. Please don't anyone tell me this isn't good for my feet…I dont know what else to try.

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It doesn't sound weird to me – my feet got swamped in a few inches of Atlantic Ocean recently. For a second, I felt shockingly chilled, then I realized that the cold water numbed the burning pain in my feet. It reset the upward-spiraling pain cycle back to 1. Peggy

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@notborntoburn

HI,I start on Wed April24 and continue every Wed. for four weeks. I had 2 Ketamine infusions in the past but they were very low doses,I am not real clear on the protocol,we are in new territory! I do not remember what it is like to walk without pain. Take Care

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Please keep us in the loop if this helps you .

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@patsyt68

Yes, my feet tingle all the time. Please let me know the supplements and any over the counter medication I can take. This tingling makes me crazy. Thank you for your help.

Patsy

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Hi @patsyt68, welcome to Connect. I'm not sure who you were addressing your question to? If you are asking a specific member, just tag them using their member name with the @ sign in front – like @patsyt68 if I wanted to ask you a question.

Are you able to share a little more about your diagnosis?

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@patsyt68

Yes, my feet tingle all the time. Please let me know the supplements and any over the counter medication I can take. This tingling makes me crazy. Thank you for your help.

Patsy

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Hello @patsyt68, I would like to join @johnbishop, in welcoming you to Connect.

If you are comfortable sharing more, please let us know a little more about yourself.

Is the tingling in your feet your only health problem? Do you take meds for other problems as well?

As the members on Connect get to know you better it is easier to share from our own experiences.

Will you post again and let us know how you are doing?

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I am scheduled to have laser treatment for peripheral neuropathy in my feet. I was ran over by a car 6 years ago. I was supposed to die. The numbness and heaviness in my feet are the last hurdles. Please share your experiences, thoughts and opinions.

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Hi Dennis @dftj12 — welcome to Connect. I have no medical training or background but do have small fiber peripheral neuropathy with only numbness and no pain. I posted my experiences/treatment earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985. It sounds like you have come a long way since the accident 6 years ago.

Did your doctor or neurologist diagnose neuropathy? Do you also have pain with the numbness and heaviness in your feet?

Liked by Lisa Lucier

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@dftj12

I am scheduled to have laser treatment for peripheral neuropathy in my feet. I was ran over by a car 6 years ago. I was supposed to die. The numbness and heaviness in my feet are the last hurdles. Please share your experiences, thoughts and opinions.

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@dftj12
Hi, Jordan. I'm scheduled for cold laser treatments in about a week. Are you having hot or cold laser treatments?

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