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.

helennicola | @helennicola | Oct 14, 2019
In reply to @jager5210 "Does anyone know of a doctor who indicated their SFN symptoms were a function of stress?..." + (show)
@jager5210

Does anyone know of a doctor who indicated their SFN symptoms were a function of stress? Is stress an actual component of pain levels or is just doctor BS?

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I have not experienced a connection that I am aware of nor has my neuro mentioned any connection. I do know that stress can have a negative influence on many conditions so maybe it depends on the individual.

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kansasgal | @kansasgal | Oct 14, 2019
In reply to @burningfeetinphoenix "@kansasgal Good. LMK how it works for me. I told Dr. Kopsky I would report back..." + (show)
@burningfeetinphoenix

@kansasgal Good. LMK how it works for me. I told Dr. Kopsky I would report back to him on my results. Have you red his studies on this Phenytoin topical? My Pharmacist said it has to be used within 30 days as the medicine will lose its compounded after that time period. At least that is true for the 10% topical. I am hopeful this will work for my feet! Pam

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Good to know about the 30 days. Yes, I read the Dr. Kopsky report, that's why I requested the cream. John had posted a link to the study.

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kansasgal | @kansasgal | Oct 14, 2019
In reply to @iceblue "How interesting that an anti-seizure medication can be compouned into a cream and used as a..." + (show)
@iceblue

How interesting that an anti-seizure medication can be compouned into a cream and used as a topical to relieve nerve pain. I am VERY interested in hearing the results of your experience.

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I'll let you know how it works. Dr. said there are no side effects from the cream.

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burningfeetinphoenix | @burningfeetinphoenix | Oct 14, 2019

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

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1 reply
lisa53 | @lisa53 | Oct 14, 2019

I don't know if this will help anyone or not, but you might consider being tested for Celiac Disease.
I was diagnosed with small fiber neuropathy. My neurologist recognized that Celiac Disease could be the culprit. Sure enough, my SFN is largely in remission now - unless I get exposed to gluten - then I have a flare up of symptoms.
I have the atypical form of Celiac Disease with its extra-intestinal manifestations - which include neuropathy in my case. They now think I may have had Celiac Disease, undiagnosed, for two decades. Doctors often fail to screen for Celiac Disease because many still think of Celiac Disease as primarily having gut symptoms only. They are now realizing most cases of Celiac Disease take the form mine has. With raising awareness most doctors will think to screen people presenting as I do - but for now, most people who have Celiac Disease do not realize that they have it. I read that 85% of cases are undiagnosed.
If you do decide to be screened, don't stop eating gluten. You need to be eating gluten for the testing to be accurate. It is incredibly hard to avoid all gluten. It is in everything - fillers, extenders, thickeners, preservatives, as well as anything that contains wheat, rye, barely. There is also cross-contamination to deal with in order to avoid gluten. So, make sure you get tested first - and if you do have Celiac Disease - get a nutritionist to help you. Most of all, remember that the diet gets easier.

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3 replies
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Rachel, Volunteer Mentor | @rwinney | Oct 14, 2019
In reply to @lisa53 "I don't know if this will help anyone or not, but you might consider being tested..." + (show)
@lisa53

I don't know if this will help anyone or not, but you might consider being tested for Celiac Disease.
I was diagnosed with small fiber neuropathy. My neurologist recognized that Celiac Disease could be the culprit. Sure enough, my SFN is largely in remission now - unless I get exposed to gluten - then I have a flare up of symptoms.
I have the atypical form of Celiac Disease with its extra-intestinal manifestations - which include neuropathy in my case. They now think I may have had Celiac Disease, undiagnosed, for two decades. Doctors often fail to screen for Celiac Disease because many still think of Celiac Disease as primarily having gut symptoms only. They are now realizing most cases of Celiac Disease take the form mine has. With raising awareness most doctors will think to screen people presenting as I do - but for now, most people who have Celiac Disease do not realize that they have it. I read that 85% of cases are undiagnosed.
If you do decide to be screened, don't stop eating gluten. You need to be eating gluten for the testing to be accurate. It is incredibly hard to avoid all gluten. It is in everything - fillers, extenders, thickeners, preservatives, as well as anything that contains wheat, rye, barely. There is also cross-contamination to deal with in order to avoid gluten. So, make sure you get tested first - and if you do have Celiac Disease - get a nutritionist to help you. Most of all, remember that the diet gets easier.

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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.

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1 reply
iceblue | @iceblue | Oct 14, 2019
In reply to @lisa53 "I don't know if this will help anyone or not, but you might consider being tested..." + (show)
@lisa53

I don't know if this will help anyone or not, but you might consider being tested for Celiac Disease.
I was diagnosed with small fiber neuropathy. My neurologist recognized that Celiac Disease could be the culprit. Sure enough, my SFN is largely in remission now - unless I get exposed to gluten - then I have a flare up of symptoms.
I have the atypical form of Celiac Disease with its extra-intestinal manifestations - which include neuropathy in my case. They now think I may have had Celiac Disease, undiagnosed, for two decades. Doctors often fail to screen for Celiac Disease because many still think of Celiac Disease as primarily having gut symptoms only. They are now realizing most cases of Celiac Disease take the form mine has. With raising awareness most doctors will think to screen people presenting as I do - but for now, most people who have Celiac Disease do not realize that they have it. I read that 85% of cases are undiagnosed.
If you do decide to be screened, don't stop eating gluten. You need to be eating gluten for the testing to be accurate. It is incredibly hard to avoid all gluten. It is in everything - fillers, extenders, thickeners, preservatives, as well as anything that contains wheat, rye, barely. There is also cross-contamination to deal with in order to avoid gluten. So, make sure you get tested first - and if you do have Celiac Disease - get a nutritionist to help you. Most of all, remember that the diet gets easier.

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

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1 reply
jager5210 | @jager5210 | Oct 14, 2019
In reply to @artscaping "@jager5210, Good morning. That is a good question. I am scheduled to see two of my..." + (show)
@artscaping

@jager5210, Good morning. That is a good question. I am scheduled to see two of my medical providers today and tomorrow. I will ask them that question.

We do know that stress exacerbates many medical conditions. It was suggested that I review my stressors. I eliminated two big ones and replaced them with mindful meditation, daily yoga practice, and my mentor activities.

Can you identify stressors in your life? What might they be and can you modify or eliminate them?

Have some joy today. Chris

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Here's the thing...I don't have any stress in my life, outside of my health issues, that wax and wane in correspondence with my pain levels

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kansasgal | @kansasgal | Oct 14, 2019
In reply to @lisa53 "I don't know if this will help anyone or not, but you might consider being tested..." + (show)
@lisa53

I don't know if this will help anyone or not, but you might consider being tested for Celiac Disease.
I was diagnosed with small fiber neuropathy. My neurologist recognized that Celiac Disease could be the culprit. Sure enough, my SFN is largely in remission now - unless I get exposed to gluten - then I have a flare up of symptoms.
I have the atypical form of Celiac Disease with its extra-intestinal manifestations - which include neuropathy in my case. They now think I may have had Celiac Disease, undiagnosed, for two decades. Doctors often fail to screen for Celiac Disease because many still think of Celiac Disease as primarily having gut symptoms only. They are now realizing most cases of Celiac Disease take the form mine has. With raising awareness most doctors will think to screen people presenting as I do - but for now, most people who have Celiac Disease do not realize that they have it. I read that 85% of cases are undiagnosed.
If you do decide to be screened, don't stop eating gluten. You need to be eating gluten for the testing to be accurate. It is incredibly hard to avoid all gluten. It is in everything - fillers, extenders, thickeners, preservatives, as well as anything that contains wheat, rye, barely. There is also cross-contamination to deal with in order to avoid gluten. So, make sure you get tested first - and if you do have Celiac Disease - get a nutritionist to help you. Most of all, remember that the diet gets easier.

Jump to this post

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.

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