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!

Some of this group's members have experienced some relief from pain by using Phenytoin Cream. I am one of those members and want everyone to be aware of the benefits. I have been using the cream (5% Phenytoin cream) 3 times a day for 3 days now. I actually cried tears of joy when I woke up this morning and was lying in bed with no pain in my feet. This has not happened in about 6 years! A compounding pharmacy has to make the prescription cream. I know Pam is using the 10% Phenytoin cream and said it has helped with her burning feet. My neurologist called in my script for 5%. There is a study you can read, John Bishop posted a link to it a few days ago. I sincerely hope all of you find some relief too!

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@kansasgal

Some of this group's members have experienced some relief from pain by using Phenytoin Cream. I am one of those members and want everyone to be aware of the benefits. I have been using the cream (5% Phenytoin cream) 3 times a day for 3 days now. I actually cried tears of joy when I woke up this morning and was lying in bed with no pain in my feet. This has not happened in about 6 years! A compounding pharmacy has to make the prescription cream. I know Pam is using the 10% Phenytoin cream and said it has helped with her burning feet. My neurologist called in my script for 5%. There is a study you can read, John Bishop posted a link to it a few days ago. I sincerely hope all of you find some relief too!

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Hi, @kansasgal – just wanted you to know I moved your post here to this discussion where you were previously discussing pain relief strategies for small fiber neuropathy so that others interested in this topic could read your update and interact with you about it.

Did you notice any side effects at all from the cream, kansasgal?

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@lisalucier

Hi, @kansasgal – just wanted you to know I moved your post here to this discussion where you were previously discussing pain relief strategies for small fiber neuropathy so that others interested in this topic could read your update and interact with you about it.

Did you notice any side effects at all from the cream, kansasgal?

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No, I did not notice any side effects. My neurologist said there were no known side effects.

Liked by Lisa Lucier

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@burningfeetinphoenix

@rwinney – I have been researching the use of Naltrexone for Neuropathy and found a few recent articles. Seems there are some studies and papers on it but not many that I can find. Sounds like this needs to also be made in a compounding pharmacy? Pam

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Hi, @burningfeetinphoenix – will you include the URLs for any helpful articles you found on the topic of naltrexone for neuropathy? @johnbishop may have some input on research on this topic, as well.

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@lisalucier

Hi, @burningfeetinphoenix – will you include the URLs for any helpful articles you found on the topic of naltrexone for neuropathy? @johnbishop may have some input on research on this topic, as well.

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@burningfeetinphoenix, @rwinney, @lisalucier — Here are a few references I found on naltrexone use. Unfortunately these only let you see the abstract and they sell the research information.

Pharmacology Update: Low-Dose Naltrexone as a Possible Nonopioid Modality for Some Chronic, Nonmalignant Pain Syndromes
https://journals.sagepub.com/doi/abs/10.1177/1049909119838974

The Use of Low-Dose Naltrexone for Chronic Pain
https://www.ingentaconnect.com/content/ascp/tscp/2019/00000034/00000001/art00004

(367) Low Dose Naltrexone for Neuropathic Pain Related to an Electrical Burn Injury: A Case Study
https://www.sciencedirect.com/science/article/abs/pii/S1526590019306595

Liked by Lisa Lucier, rwinney

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These are the only ones I've been able to find. @rwinney knows more about this treatment as she was advised about it's effectiveness by her Neurologist. Pam

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@lisalucier

Hi, @burningfeetinphoenix – will you include the URLs for any helpful articles you found on the topic of naltrexone for neuropathy? @johnbishop may have some input on research on this topic, as well.

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@burningfeetinphoenix

These are the only ones I've been able to find. @rwinney knows more about this treatment as she was advised about it's effectiveness by her Neurologist. Pam

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Bare with me…just waking up…but I will post various links on LDN. I have spoke twice to my compounding pharmacy as well. My feelings are that it may be a bit more strategic for someone already on opiods to switch or combine LDN verses starting at the beginning of the pain journey.
http://www.drliptan.com/blog/2017/11/21/lessons-learned-on-opiates-and-ldn-for-fibromyalgia#

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@rwinney

Bare with me…just waking up…but I will post various links on LDN. I have spoke twice to my compounding pharmacy as well. My feelings are that it may be a bit more strategic for someone already on opiods to switch or combine LDN verses starting at the beginning of the pain journey.
http://www.drliptan.com/blog/2017/11/21/lessons-learned-on-opiates-and-ldn-for-fibromyalgia#

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My 15 year old son, who has idiopathic SFN, tried LDN for about 5 months. He started at a very low dose and the max was 4.5mg. He unfortunately did not get any relief from LDN and discontinued it. It was made at a compounding pharmacy. Like any treatment, I’m sure someone will get good results from it and if you’re in our situation where nothing has brought him any kind of pain relief yet, it’s always worth trying if your doctor thinks it’s a good idea.

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@katec

My 15 year old son, who has idiopathic SFN, tried LDN for about 5 months. He started at a very low dose and the max was 4.5mg. He unfortunately did not get any relief from LDN and discontinued it. It was made at a compounding pharmacy. Like any treatment, I’m sure someone will get good results from it and if you’re in our situation where nothing has brought him any kind of pain relief yet, it’s always worth trying if your doctor thinks it’s a good idea.

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First off, I'm very sorry to hear your son was diagnosed with SFN. That is so unfair and my heart goes out to both him and you. I'm hoping he is unaffected by many of the possible side effects and that his youth makes him more resilient to handling it. Thanks for the advice. Be well.
Rachel

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