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!

Thanks for the reply. I wasn't suggesting that I think I have C-diff just that some researches think there is a connection between bacterial infections in our guts and many neurological disorders. I went through this 5 years ago and a holistic practice found that I had a bacterial infection and a parasite. Treatment made it worse such that I was up during the night for a month with severe diarrhea. I was put on Creon for over a year which another gastro told me was inappropriate. Eventually I got back to where I was with the fall back IBS symptoms. To be honest, I'm just worn out from trying all the diets and seeing all the doctors and still ending up in the same place. Although it makes sense to try the elimination diet before I go to Mayo, assuming my neurologist can get me an appointment, I just want someone else to figure it out.

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@jager5210

Thanks for the reply. I wasn't suggesting that I think I have C-diff just that some researches think there is a connection between bacterial infections in our guts and many neurological disorders. I went through this 5 years ago and a holistic practice found that I had a bacterial infection and a parasite. Treatment made it worse such that I was up during the night for a month with severe diarrhea. I was put on Creon for over a year which another gastro told me was inappropriate. Eventually I got back to where I was with the fall back IBS symptoms. To be honest, I'm just worn out from trying all the diets and seeing all the doctors and still ending up in the same place. Although it makes sense to try the elimination diet before I go to Mayo, assuming my neurologist can get me an appointment, I just want someone else to figure it out.

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Do you know if black mold can cause nerve damage?

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@jager5210

Hi Jennifer,

Thank you for your informative reply. Sadly, the one thing I haven't tried but have been aware of for years Is the elimination diet. I was disciplined to be a vegan for a year but more recently was on the paleo diet. I just don't think I can stay on the elimination diet. But since I'm convinced a food allergy may play a role I'm just going to have to do it. For a long time I eliminated dairy but I ate lots of beans and tomatoes and peppers. I read Gundry's book and stopped eating beans, tomatoes and peppers last summer and I did see some improvement but I guess I'm never convinced and so reverted to my old favorite meals with the nightshades. Gluten I gave up a few years ago but it's hard to avoid completely if you eat out. The problem is that the reaction is not immediate so it's hard to be totally convinced of the cause and effect which, I guess, is the argument for the elimination diet. Thanks again for your well-informed reply.

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@jager5210 You're welcome. I don't eat out very often myself, and always have a discussion with the staff. There are enzymes available now and I saw them at a CVS pharmacy that digest the gluten. I think people with gluten issues are deficient in the ability to produce this enzyme for digestion, so if you are eating out and are not sure, that is an option to reduce exposure. I had to give up nightshades for the most part, and I developed a reaction to tomatoes, but I found that I could tolerate them cooked in sauces if I don't do it too often. I can get joint pain in my fingers if I have too much. I also have asthma, and foods that trigger that are ones I avoid. I have been gluten free for 20 years and recently accidentaly ate a couple bites of Mac and cheese that wasn't gluten free and was real dairy. I thought it was the leftovers from my own gluten free/dairy free version. I did get pain in my stomach and intestines, but after a day, I was OK. My reaction to a mistake like that used to be worse like getting the stomach flu, and would also involve my asthma, and I think that because it had been years since my immune system was constantly fighting the gluten war, the soldiers were on leave. You can just start with basic foods without seasoning; plain meat and vegetables like your paleo diet. It gets tricky when you have to test individual ingredients and when labels don't tell you anything. That is true of a lot of seasonings and when a restaurant buys a large container of it, there isn't any guarantee, and they just don't know. That's why I avoid seasonings and spices unless I'm at home and know what is safe. I know for myself, any kind of pepper causes a problem. I've read that Bananas are related to ragweed, and I have breathing issues if I eat a tiny bite. Sometimes a person can tolerate a food if it is not eaten during the allergy season for a related plant. I can eat an egg yolk, but not the white and the only way to completely separate that well is hard boiling it first. I use the unsweetened coconut milk instead of dairy. I also treat my inhaled allergies for mold spores, grasses, ragweed, dust, etc. I do allergy shots. According to my functional medicine doctor, that reduces inflammation in the body for everything when you treat allergies that contribute to it. Just keep track of what is different about foods you ate if you don't feel well after. I give it a few tries to make sure I get the same results each time before I eliminate it altogether. Another suggestion may be digestive enzymes. I think as we age, we are less efficient at digestion, so adding some digestive enzymes may help. I have taken those before. The name of the game is really to try to reduce inflammation everywhere in your body as it is the root cause of a lot of disease. Eating foods that reduce inflammation helps a lot.

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@resawaller

Do you know if black mold can cause nerve damage?

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@resawaller — Fortunately I have no personal experience with black mold but I'm pretty sure it is toxic and can cause health issues. Here's some information that expands on it.

NIH – Mold Infections of the Central Nervous System
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4840461/

Have you been exposed to black mold?

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@terryrose

My diagnosis is peripheral neuropathy. I have numb feet and numbness on one leg up to the knee. But at the same time the feet are so sensitive that I can't wear socks, even though the compression socks might work. Reason is that one small wrinkle feels like I'm on a rock or nail, etc.
Hoping some cure can be found.

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The DMSO cream helped the burning/pain in my feet. I had to cut the elastic around the top of my socks to even be able to wear them! I use the cream after my shower in the morning and it really helps with the sensitivity.

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@jenniferhunter

@jager5210 You're welcome. I don't eat out very often myself, and always have a discussion with the staff. There are enzymes available now and I saw them at a CVS pharmacy that digest the gluten. I think people with gluten issues are deficient in the ability to produce this enzyme for digestion, so if you are eating out and are not sure, that is an option to reduce exposure. I had to give up nightshades for the most part, and I developed a reaction to tomatoes, but I found that I could tolerate them cooked in sauces if I don't do it too often. I can get joint pain in my fingers if I have too much. I also have asthma, and foods that trigger that are ones I avoid. I have been gluten free for 20 years and recently accidentaly ate a couple bites of Mac and cheese that wasn't gluten free and was real dairy. I thought it was the leftovers from my own gluten free/dairy free version. I did get pain in my stomach and intestines, but after a day, I was OK. My reaction to a mistake like that used to be worse like getting the stomach flu, and would also involve my asthma, and I think that because it had been years since my immune system was constantly fighting the gluten war, the soldiers were on leave. You can just start with basic foods without seasoning; plain meat and vegetables like your paleo diet. It gets tricky when you have to test individual ingredients and when labels don't tell you anything. That is true of a lot of seasonings and when a restaurant buys a large container of it, there isn't any guarantee, and they just don't know. That's why I avoid seasonings and spices unless I'm at home and know what is safe. I know for myself, any kind of pepper causes a problem. I've read that Bananas are related to ragweed, and I have breathing issues if I eat a tiny bite. Sometimes a person can tolerate a food if it is not eaten during the allergy season for a related plant. I can eat an egg yolk, but not the white and the only way to completely separate that well is hard boiling it first. I use the unsweetened coconut milk instead of dairy. I also treat my inhaled allergies for mold spores, grasses, ragweed, dust, etc. I do allergy shots. According to my functional medicine doctor, that reduces inflammation in the body for everything when you treat allergies that contribute to it. Just keep track of what is different about foods you ate if you don't feel well after. I give it a few tries to make sure I get the same results each time before I eliminate it altogether. Another suggestion may be digestive enzymes. I think as we age, we are less efficient at digestion, so adding some digestive enzymes may help. I have taken those before. The name of the game is really to try to reduce inflammation everywhere in your body as it is the root cause of a lot of disease. Eating foods that reduce inflammation helps a lot.

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Thanks again Jennifer. I admire you wisdom and discipline. I can't recall for sure, but I think Dr. Gundry in his "Plant Paradox" did say tomatoes without skins and seeds are ok. I'll have to check. He said the lectins, defense mechanism of plants, is what causes problems for some people. I have to do something as pain and numbness has really ramped up to unprecedented levels. I don't think I've read anyone complaining about tooth nerve pain but I feel like I can feel the nerves of all my teeth at night. Additionally, a large part of the my mouth is numb and my tongue is painful. Oh well, back to plain eating. Thanks again for the encouragement!

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Anyone using or know how to get Phenytoin (Brand name Dilantin) Cream? I read this study on it at link below. I have a link to the study but I cannot post links according to the rules…

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@burningfeetinphoenix

Anyone using or know how to get Phenytoin (Brand name Dilantin) Cream? I read this study on it at link below. I have a link to the study but I cannot post links according to the rules…

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@burningfeetinphoenix I see that you wanted to share link to information to share with fellow members. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

Case Report – Topical Phenytoin Cream in Small Fiber Neuropathic Pain: Fast Onset of Perceptible Pain Relief by Jan M Keppel Hesselink and David J Kopsky (2017) https://www.scireslit.com/Pain/IJPR-ID13.pdf

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@colleenyoung

@burningfeetinphoenix I see that you wanted to share link to information to share with fellow members. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

Case Report – Topical Phenytoin Cream in Small Fiber Neuropathic Pain: Fast Onset of Perceptible Pain Relief by Jan M Keppel Hesselink and David J Kopsky (2017) https://www.scireslit.com/Pain/IJPR-ID13.pdf

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Thx! That is the study I was looking at…

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Where can you get this cream?. Sounds like it’s worth a try.

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@burningfeetinphoenix

Thx! That is the study I was looking at…

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Where can you purchase this cream????

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Hi @peggyn…I have posted on a couple of topicals. The one I was able to order was PEA Cream. I do not have it yet but did get the 100% pure PEA from a company in the Netherlands. I was available on Amazon. The PEA cream I ordered from Vitalitus LLC. It has not arrived yet. It's brand name is Soothamide – PEA 2% Topical Cream. I have not been able to find Phenytoin cream which has positive studies. BTW PEA is abbreviation for Palmitoylethanolamide. You can read about it in a brief study in the British Journal of Clinical Pharmacology. This study covers the PEA capsules, not the topical. I am working up to 1200 Mg/day. I cannot post link on this site but look up "Palmitoyethanolamide for the treatment of pain: pharmacokinetics safety and efficacy" Revised May 20019. The authors are from Sweden. This paper is based on 16 clinical trials. Onepaper on the topical PEA was pucblished by the HIH. Look up "Therapeutic utility of palmitoylethanolamide in the treatment of neuropathic pain associated with various pathological conditions: a case series" Published 2012. I'll be posting more on this in the future I am certain…Pam

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