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.

lioness | @lioness | Feb 18, 2020
In reply to @darlingtondoll "I need a lot of supplies and added to the clothes, well, I need a suitcase...." + (show)
@darlingtondoll

I need a lot of supplies and added to the clothes, well, I need a suitcase. After looking at various cruise itineraries, I found that “I have been there and done that”. I went to Machu Picchu when they were still rebuilding the site and my husband and I had the place to ourselves for the whole day! I have seen Stonehenge and been everywhere I have always wanted to go. So if I went on a cruise, I probably would not get off the ship. I went to the top of the crow’s nest on a big sailing ship near Sardinia for my 60th birthday.

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@darlingtondoll Boy your braver then me I haven't been out of the country good thing you didall that hope you have pictures I got to Canada and Mexico I have fear of heights and claustrophobic although one year we did allcaves Mammoth,Sweetwater went in by boat Penn caverns Just looking at that picture gave me willies

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 18, 2020
In reply to @darlingtondoll "Hi Rachel. I know how you feel about the changes in your life. Some people mark..." + (show)
@darlingtondoll

Hi Rachel. I know how you feel about the changes in your life. Some people mark the time by important events in their life - like a marriage or the birth of a child. I mark time by an event that happened on April 27, 2012. My whole life changed when I became a paraplegic. I had been newly married, just 10 months, and suddenly I could no longer move at all. I could not sit up to feed myself, I was incontinent, and I could not even dress myself. I was hospitalized for six weeks. Because I was bedridden, I had multiple pulmonary emboli which were life threatening. I remember the doctor in the emergency room asking me for the telephone number of my next of kin. I told him to hang a bag or two of heparin and that I would be okay. It worked like a charm. But I still couldn’t take care of myself and I needed a lot of therapy to teach me how to live in a wheelchair. The burning, stabbing pain was there particularly in my spinal cord where the injury happened and also in my legs and hips. I had horrible leg spasms and my legs would go flying up in the air. I had no control of my body. I just wanted to get better. I truly believed that I would walk one day. That never happened, but with five years of intensive therapy, I can walk for a very short distance in a walker, probably only about 20 yards. I did discover how strong I was in spirit. I never gave up and even though I am wheelchair bound, I can take care of myself now. I miss being able to travel though. I am restricted by the pain and the difficulty of going more than two hours in the car. I really want to take a trip for the next birthday. I have looked into taking a cruise, but after seeing what happened to the passengers on the cruise ships with that virus from China, I think that I will forgo any trips on a ship. There are some train trips, but I don’t know how I will travel with my wheelchair and a suitcase. I need two hands to get around in the chair so how do I handle that suitcase? I will figure out something, I hope. My husband hates to travel so I will go alone when I figure out where I want to go. I need to carry a lot of supplies because of my incontinence. That is the worst part of being paralyzed. I hate the pain, but I have learned how to live with it. Because I am now in kidney failure, I have to pay a lot of attention to my bathroom issues. I am also on a strict kidney diet, so eating out is a big problem. Okay! I have unloaded today. We all need to do that sometimes and this forum seems to be the right place. I’m not depressed, just frustrated. I miss being able to walk in my house. I hate cooking from a wheelchair. I drop things all the time. Yesterday when I was taking a big jar of rice out of the pantry and I dropped it on the floor and there was rice all over the kitchen. Oh well, we all have myriad problems associated with our neuropathy. I feel better now.🤪

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YOU are an amazing woman and remind me alot of my Mom. She was blessed to walk again after a motorcycle accident that broke both her legs. She spent much time in a wheel chair over decades but fortunate to have not been paralyzed.

You politely snapped me out of my pity party and proved that life challenges come in a multitude of examples and degrees. Thank you!

~Rachel

P.S. My Mom was/is a daredevil too and I love that about her!

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1 reply
Robin | @birdierobin | Feb 18, 2020
In reply to @lioness "@birdierobin Yes under reply there is a heart clickk on it that is a like that's..." + (show)
@lioness

@birdierobin Yes under reply there is a heart clickk on it that is a like that's what I clicked on for your post hope this helped

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Yes, thank you

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Robin | @birdierobin | Feb 18, 2020
In reply to @rwinney "YOU are an amazing woman and remind me alot of my Mom. She was blessed to..." + (show)
@rwinney

YOU are an amazing woman and remind me alot of my Mom. She was blessed to walk again after a motorcycle accident that broke both her legs. She spent much time in a wheel chair over decades but fortunate to have not been paralyzed.

You politely snapped me out of my pity party and proved that life challenges come in a multitude of examples and degrees. Thank you!

~Rachel

P.S. My Mom was/is a daredevil too and I love that about her!

Jump to this post

I am so glad your mom is OK with that was a horrendous accident - both ilegs oh my. God bless her. I have been a daredevil all my life and that makes what’s happening to me very hard it’s hard to go from 100 miles an hour to zero overnight basically

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 18, 2020
In reply to @darlingtondoll "Thanks. Yeah, I am one tough cookie.🍪" + (show)
@darlingtondoll

Thanks. Yeah, I am one tough cookie.🍪

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Bravery = courage
Courage = strength
Strength = perseverance
Perseverance = survivor
Survivor = Us!

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 18, 2020
In reply to @birdierobin "I am so glad your mom is OK with that was a horrendous accident - both..." + (show)
@birdierobin

I am so glad your mom is OK with that was a horrendous accident - both ilegs oh my. God bless her. I have been a daredevil all my life and that makes what’s happening to me very hard it’s hard to go from 100 miles an hour to zero overnight basically

Jump to this post

Exactly. I believe I read that you used to fly. My mother and her significant other, who is a pilot, flew a twin engine 2 seater expensive air craft to Europe for delivery. She journaled every day. They had to wear full body jump suits in case they went down over the ocean. Amazing trip. It's very sad when things can't happen for us like they used to. Guess it just means there must be more creative ways for adventure like @darlingtondoll is proving.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 18, 2020
In reply to @birdierobin "I am so glad your mom is OK with that was a horrendous accident - both..." + (show)
@birdierobin

I am so glad your mom is OK with that was a horrendous accident - both ilegs oh my. God bless her. I have been a daredevil all my life and that makes what’s happening to me very hard it’s hard to go from 100 miles an hour to zero overnight basically

Jump to this post

PS...that 100 to zero is me too. Hard to slam breaks on like that and get a handle on your new forced existence overnight. Takes time. Some more time than others and that"s ok.

REPLY
1 reply
Robin | @birdierobin | Feb 18, 2020
In reply to @rwinney "Exactly. I believe I read that you used to fly. My mother and her significant other,..." + (show)
@rwinney

Exactly. I believe I read that you used to fly. My mother and her significant other, who is a pilot, flew a twin engine 2 seater expensive air craft to Europe for delivery. She journaled every day. They had to wear full body jump suits in case they went down over the ocean. Amazing trip. It's very sad when things can't happen for us like they used to. Guess it just means there must be more creative ways for adventure like @darlingtondoll is proving.

Jump to this post

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

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1 reply
Robin | @birdierobin | Feb 18, 2020
In reply to @rwinney "PS...that 100 to zero is me too. Hard to slam breaks on like that and get..." + (show)
@rwinney

PS...that 100 to zero is me too. Hard to slam breaks on like that and get a handle on your new forced existence overnight. Takes time. Some more time than others and that"s ok.

Jump to this post

You got that right girl you got that right

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 18, 2020
In reply to @darlingtondoll "Hi Rachel. I know how you feel about the changes in your life. Some people mark..." + (show)
@darlingtondoll

Hi Rachel. I know how you feel about the changes in your life. Some people mark the time by important events in their life - like a marriage or the birth of a child. I mark time by an event that happened on April 27, 2012. My whole life changed when I became a paraplegic. I had been newly married, just 10 months, and suddenly I could no longer move at all. I could not sit up to feed myself, I was incontinent, and I could not even dress myself. I was hospitalized for six weeks. Because I was bedridden, I had multiple pulmonary emboli which were life threatening. I remember the doctor in the emergency room asking me for the telephone number of my next of kin. I told him to hang a bag or two of heparin and that I would be okay. It worked like a charm. But I still couldn’t take care of myself and I needed a lot of therapy to teach me how to live in a wheelchair. The burning, stabbing pain was there particularly in my spinal cord where the injury happened and also in my legs and hips. I had horrible leg spasms and my legs would go flying up in the air. I had no control of my body. I just wanted to get better. I truly believed that I would walk one day. That never happened, but with five years of intensive therapy, I can walk for a very short distance in a walker, probably only about 20 yards. I did discover how strong I was in spirit. I never gave up and even though I am wheelchair bound, I can take care of myself now. I miss being able to travel though. I am restricted by the pain and the difficulty of going more than two hours in the car. I really want to take a trip for the next birthday. I have looked into taking a cruise, but after seeing what happened to the passengers on the cruise ships with that virus from China, I think that I will forgo any trips on a ship. There are some train trips, but I don’t know how I will travel with my wheelchair and a suitcase. I need two hands to get around in the chair so how do I handle that suitcase? I will figure out something, I hope. My husband hates to travel so I will go alone when I figure out where I want to go. I need to carry a lot of supplies because of my incontinence. That is the worst part of being paralyzed. I hate the pain, but I have learned how to live with it. Because I am now in kidney failure, I have to pay a lot of attention to my bathroom issues. I am also on a strict kidney diet, so eating out is a big problem. Okay! I have unloaded today. We all need to do that sometimes and this forum seems to be the right place. I’m not depressed, just frustrated. I miss being able to walk in my house. I hate cooking from a wheelchair. I drop things all the time. Yesterday when I was taking a big jar of rice out of the pantry and I dropped it on the floor and there was rice all over the kitchen. Oh well, we all have myriad problems associated with our neuropathy. I feel better now.🤪

Jump to this post

@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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