1. < Neuropathy

Ideas for pain relief from Small Fiber Neuropathy (SFN)

Posted by somisgirl @somisgirl, Sep 6, 2019

I just wanted to pass along some ideas for those of you with idiopathic small fiber neuropathy. I am a 60-year-old female in excellent health other than the onset of this about a year ago. I do not have diabetes or any other detectable health issues.
I started some new things a few weeks ago and this week I have had some remarkable relief. I am not sure if what I have done is why, or which thing might have helped, but still wanted to pass this along just to give some of you some things to try.

I wear compression socks. This seems to help with the pain and pressure I feel in my feet and ankles.
I started taking Evening of Primrose oil twice a day.
I have cut my caffeine intake by at least two-thirds and now drink mostly green or black tea. I had heard that caffeine could irritate nerves...worth a shot.
I exercise, which I have been doing for over 20 years. I think it improves circulation which I think really helps with nerve health.
I added niacin. I will aid in blood flow, also good for circulation.
I use a cream called DMSO which i put on my feet and ankles in the morning (numbs the pain)

I don't know if any of this could be helpful for you or not, But I seem greatly improved recently......I have tried everything and am always looking for new things to try in order to function with this awful condition.
I am still taking 600mg of Gabapentin 3 times a day and 20 mg Citalopram once a day and have been for 9 months. I do not take any other medications.

Blessings to all of you and I hope there is a cure some day. I intend to keep looking for solutions that do not require medications!

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 18, 2020
In reply to @birdierobin "That’s amazing it wasn’t me that used to fly that was somebody else I remember it..." + (show)
@birdierobin

That’s amazing it wasn’t me that used to fly that was somebody else I remember it too but I can’t remember who said it but that was amazing your mother was a very good spirit

Jump to this post

Darn. Then it was your love of motorcycles that made me connect. Either way...you are awesome and you have very kind, encouraging words.

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 18, 2020
In reply to @artscaping "@darlingtondoll, I have read every word of your post and even caught those feelings that creep..." + (show)
@artscaping

@darlingtondoll, I have read every word of your post and even caught those feelings that creep in and make a strong statement.

I just completed my first travel adventure with medications, injections, incontinence supplies, foods, beverages, appropriate shoes, and clothing. My first flight took me to Austin, Texas to spend a week with my adorable grandchildren, Jay Paul and Amelia Marie. I made it even though the security lady still had to check out the pocket area around my crotch even after I told her I didn't have any pockets. I kept my cool.

My life partner carried a lot of items for me and made sure I was comfortable and not being harassed or yelled at. So...if you want your best chance at not having to be wanded and searched, then no zippers, no metal of any kind, no wide-leg pants, no body lotions or powders and nothing from the TSA no-can-do list for medications. Don't forget...no ice or water/liquids until you are seated on the plane.

Have you looked at adventures that include accommodations for seniors with mobility issues or disabilities? Are there caregivers who could help you? Is there funding available for that kind of service?

I have not wanted to risk a cruise either.....especially when I am not able to take care of myself totally. If you do decide to cruise, be sure you work with the special needs staff on board. They will help you get through security on and off the ship. I also think they will do everything they can to prepare your special menu and support your mobility.

So was it worth it...? Oh yes, it was. The two images with this post will tell you that....I was just as happy as a lark. So what else will you need? You will need rest. I couldn't believe how fatigued I became and how many naps I took. Without enough rest, the pain associated with this endeavor starts to build up.

You are right next to amazing. Chris

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Oooo...you stole my heart with this one Chris!

REPLY
Robin | @birdierobin | Feb 18, 2020

Beautiful pics! Heads off the flying I refuse to fly or take cruises days forget it it’s too much pain too much trouble!! Driving for me

REPLY
Robin | @birdierobin | Feb 18, 2020
In reply to @rwinney "Darn. Then it was your love of motorcycles that made me connect. Either way...you are awesome..." + (show)
@rwinney

Darn. Then it was your love of motorcycles that made me connect. Either way...you are awesome and you have very kind, encouraging words.

Jump to this post

Rwhinny you’re so funny you crack me up thank you I need that!!

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 18, 2020
In reply to @artscaping "@darlingtondoll, I have read every word of your post and even caught those feelings that creep..." + (show)
@artscaping

@darlingtondoll, I have read every word of your post and even caught those feelings that creep in and make a strong statement.

I just completed my first travel adventure with medications, injections, incontinence supplies, foods, beverages, appropriate shoes, and clothing. My first flight took me to Austin, Texas to spend a week with my adorable grandchildren, Jay Paul and Amelia Marie. I made it even though the security lady still had to check out the pocket area around my crotch even after I told her I didn't have any pockets. I kept my cool.

My life partner carried a lot of items for me and made sure I was comfortable and not being harassed or yelled at. So...if you want your best chance at not having to be wanded and searched, then no zippers, no metal of any kind, no wide-leg pants, no body lotions or powders and nothing from the TSA no-can-do list for medications. Don't forget...no ice or water/liquids until you are seated on the plane.

Have you looked at adventures that include accommodations for seniors with mobility issues or disabilities? Are there caregivers who could help you? Is there funding available for that kind of service?

I have not wanted to risk a cruise either.....especially when I am not able to take care of myself totally. If you do decide to cruise, be sure you work with the special needs staff on board. They will help you get through security on and off the ship. I also think they will do everything they can to prepare your special menu and support your mobility.

So was it worth it...? Oh yes, it was. The two images with this post will tell you that....I was just as happy as a lark. So what else will you need? You will need rest. I couldn't believe how fatigued I became and how many naps I took. Without enough rest, the pain associated with this endeavor starts to build up.

You are right next to amazing. Chris

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Hey Chris - mind giving me pointers on air travel with medical cannabis? Thanks

REPLY
1 reply
Jane | @darlingtondoll | Feb 18, 2020
In reply to @rwinney "Hey Chris - mind giving me pointers on air travel with medical cannabis? Thanks" + (show)
@rwinney

Hey Chris - mind giving me pointers on air travel with medical cannabis? Thanks

Jump to this post

I can answer that. You can’t take it with you. It is only legal with your card in the state where the card is issued. Ask your marijuana doctor. You can get arrested. If you visit a state where marijuana is legal to everyone, then you can buy it there, but your card is not accepted except in the state where you live. It matches my license in my state.

REPLY
1 reply
Jane | @darlingtondoll | Feb 18, 2020

I was told that I can’t take it if I go to the state which borders my state. The Federal Government has still outlawed marijuana even though it is legal in quite a few states now.

REPLY
Jane | @darlingtondoll | Feb 18, 2020
In reply to @artscaping "@darlingtondoll, I have read every word of your post and even caught those feelings that creep..." + (show)
@artscaping

@darlingtondoll, I have read every word of your post and even caught those feelings that creep in and make a strong statement.

I just completed my first travel adventure with medications, injections, incontinence supplies, foods, beverages, appropriate shoes, and clothing. My first flight took me to Austin, Texas to spend a week with my adorable grandchildren, Jay Paul and Amelia Marie. I made it even though the security lady still had to check out the pocket area around my crotch even after I told her I didn't have any pockets. I kept my cool.

My life partner carried a lot of items for me and made sure I was comfortable and not being harassed or yelled at. So...if you want your best chance at not having to be wanded and searched, then no zippers, no metal of any kind, no wide-leg pants, no body lotions or powders and nothing from the TSA no-can-do list for medications. Don't forget...no ice or water/liquids until you are seated on the plane.

Have you looked at adventures that include accommodations for seniors with mobility issues or disabilities? Are there caregivers who could help you? Is there funding available for that kind of service?

I have not wanted to risk a cruise either.....especially when I am not able to take care of myself totally. If you do decide to cruise, be sure you work with the special needs staff on board. They will help you get through security on and off the ship. I also think they will do everything they can to prepare your special menu and support your mobility.

So was it worth it...? Oh yes, it was. The two images with this post will tell you that....I was just as happy as a lark. So what else will you need? You will need rest. I couldn't believe how fatigued I became and how many naps I took. Without enough rest, the pain associated with this endeavor starts to build up.

You are right next to amazing. Chris

Jump to this post

Oh how nice to hold a baby again. My one and only granddaughter is 26 years old and she is sterile from years of anorexia. So that’s the end of the line for me. I enjoyed playing with her when she was a baby. I convinced my daughter and her husband to move clear across the country so that I could take care of her while they worked. I loved it.

REPLY
1 reply
Jane | @darlingtondoll | Feb 18, 2020

I did travel a bit when I was first paralyzed, but the years have taken their toll. You are right about security at the airport. I was in a wheelchair and the security person demanded that I stand so that she could frisk me. I told her that I can’t stand and she yelled at me. She said that I could not fly unless I stood up to be patted down. What a hassle. Anyway, she lost the argument and I got on the plane.

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