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.

kansasgal | @kansasgal | Oct 14, 2019
In reply to @burningfeetinphoenix "@kansasgal Same here. I am getting the 10% compounded. 5% may have a longer "shelf Life"...." + (show)
@burningfeetinphoenix

@kansasgal Same here. I am getting the 10% compounded. 5% may have a longer "shelf Life". Better ask. Pam

Jump to this post

Pharmacy called, it'll be $16 with co-pay! Ready Wednesday or Thursday of this week. Pam, I'll ask about shelf life, thanks!

REPLY
1 reply
burningfeetinphoenix | @burningfeetinphoenix | Oct 14, 2019

@kansasgal That's great. I do not think my insurance will cover it as I have to go to CVS for my drug insurance. Mine will be $60.00. Pam

REPLY
lisa53 | @lisa53 | Oct 14, 2019
In reply to @rwinney "This is great to bring up because it opens the door to anyone who has not..." + (show)
@rwinney

This is great to bring up because it opens the door to anyone who has not had an extensive and thorough workup by their neurologist.

Every person diagnosed with SFN should have "the works" to determine your underlying cause. If you neurologist does not take this route then you have every right to ask for it, as long as you can afford of course.

My workup took 4 months to complete....from blood work to spinal tap. Leave no stone unturned.

Jump to this post

The initial screening is a simple blood test. I think, as more doctors are aware of Celiac Disease, they will think to do it more often.
You give good advice.

REPLY
1 reply
lisa53 | @lisa53 | Oct 14, 2019
In reply to @iceblue "Wow! That is really interesting!. I was tested for celiac several years ago, but the results..." + (show)
@iceblue

Wow! That is really interesting!. I was tested for celiac several years ago, but the results were negative - so that's not my issue.

Jump to this post

Celiac Disease, if you carry the gene for it, can be triggered at any age. You may want to be screened again just in case. That said, of course, not all cases of SFN are from Celiac Disease. I just threw my suggestion out there because so many doctors failed to screen me. They figure I have had Celiac Disease for two decades (at least). It was only in recent years that I went on to develop the neuropathy. I just feel blessed that they did identify the cause as I am so vastly improved.

REPLY
lisa53 | @lisa53 | Oct 14, 2019
In reply to @kansasgal "I was tested for Celiac and was negative. I asked my GP because my son was..." + (show)
@kansasgal

I was tested for Celiac and was negative. I asked my GP because my son was diagnosed with celiac disease about 20 years ago. The diet is soo easy now, with all of the gluten free items. I used to have to make his bread with about 6 different flours (rice, tapioca, etc) in a bread maker used for only gf flours.

Jump to this post

My doctor took me off all GF foods unless they are "certified". Turns out the GF pizzas I was eating are often contaminated. That said, it is my understanding that those who have been on the GF diet for decades are finding it easier these days, primarily because of the better labelling of foods and the availability of the flours you are talking about. I have been diagnosed 4 years now and it is way easier as I learn, but I found it enormously difficult at first. I am a terrible cook to boot.

REPLY
burningfeetinphoenix | @burningfeetinphoenix | Oct 14, 2019

@kansasga Dr. William Davis (book "Wheat Belly") and Dr. Daniel Perlmutter (book "Grain Brain") and other Doctors like them recommend not eating any GF processed foods. A lot of what manufacturers put in GF foods is as bad, or worse for one's health than gluten! Pam

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 14, 2019
In reply to @lisa53 "The initial screening is a simple blood test. I think, as more doctors are aware of..." + (show)
@lisa53

The initial screening is a simple blood test. I think, as more doctors are aware of Celiac Disease, they will think to do it more often.
You give good advice.

Jump to this post

Another blood test of the protocol is genetic. And I've learned that some of the standard blood testing is not deep enough and there are specialty tests for celiac. I think these things are important to know for the folks that are idiopathic.

REPLY
jager5210 | @jager5210 | Oct 14, 2019

Hi Chris,

No stressors except my medical issues. Really! I'm very lucky in this regard. I cannot relate the fluctuations in my SFN symptoms with anything for certain.

REPLY
1 reply
tigreyes2004 | @tigreyes2004 | Oct 14, 2019

I have idiopathic neuropathy. I am on 300 mg of Gabapentin & I take 200 mg at bedtime & 100 mg in the morning along with 60 mg of Cymbalta. I have been on Gabapentin for 4 months now & I'm still in pain & it seems to never go away. What exactly is Idiopathic Neuropathy? Is there a time when you don't have any pain or does this gabapentin just relieve some of the pain. I don't know what to do & I hate for the dr. to keep increasing my dose. I would appreciate any advise. Thank You Genie

REPLY
burningfeetinphoenix | @burningfeetinphoenix | Oct 15, 2019

@tigreyes2004 - From the dictionary online:

id·i·o·path·ic
/ˌidēəˈpaTHik/
Learn to pronounce
adjective MEDICINE
relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown.
For example "idiopathic epilepsy"

REPLY
View MoreView Less
Please sign in or register to post a reply.