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!

@artscaping

@burningfeetinphoenix, @iceblue, And so….here is another person with similar SFN experiences. I started on Cymbalta a year ago…in a graduated dosage of 20 mg, 40 mg, 60 mg, over a three month period. I experienced the benefits of the medication the very first week. I even questioned moving the dosage up the scale. I did get the sense that my body was becoming accommodated to the medication and that more might be needed to stay on top of things.

Initially, this medication was prescribed for pretty severe anxiety about the pain which was creating more pain which then created more anxiety and the cycle just ramped up. Today right before my appointment with my PCP I am trying to see what the status quo is now so that I can give her accurate and authentic feedback.

It is good to read that the Gabapentin is working for you. Do you only take it at night? Do you find that your hands and feet have less tingling and numbness? Does that mean your extremities are pain-free?

May you both be free of suffering….Chris

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For context it's important to know that this is only the fourth night that I've taken 300 mg of Gabapentin. Having said that: Yes, I only take it at night. I have experienced virtually no tingling in my hands and feet at this dosage. I have never experienced numbness so cannot speak to that. I have been pain free for three solid days – and that includes the burning, and the aching and stiffness that I had attributed to arthritis or some other sort of structural issue with my feet….

The only down side is that it appears to have caused my insomnia to resurface. I only work part time and only have 3 weeks left in my contract – so I'll supplement with Zopiclone on work nights until the term is done. When I'm not working it doesn't matter that I'm up until 3 AM 😉

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@artscaping

@burningfeetinphoenix, @iceblue, And so….here is another person with similar SFN experiences. I started on Cymbalta a year ago…in a graduated dosage of 20 mg, 40 mg, 60 mg, over a three month period. I experienced the benefits of the medication the very first week. I even questioned moving the dosage up the scale. I did get the sense that my body was becoming accommodated to the medication and that more might be needed to stay on top of things.

Initially, this medication was prescribed for pretty severe anxiety about the pain which was creating more pain which then created more anxiety and the cycle just ramped up. Today right before my appointment with my PCP I am trying to see what the status quo is now so that I can give her accurate and authentic feedback.

It is good to read that the Gabapentin is working for you. Do you only take it at night? Do you find that your hands and feet have less tingling and numbness? Does that mean your extremities are pain-free?

May you both be free of suffering….Chris

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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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@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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Oh my, yes, it heightens, provokes and intensifies pain. Proven fact, especially nerve pain. I speak from my personal experience.

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@rwinney

Oh my, yes, it heightens, provokes and intensifies pain. Proven fact, especially nerve pain. I speak from my personal experience.

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Cymbalta is a highly prescribed medicine for nerve pain which also treats anxiety and helps counteract stress/pain.

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@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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@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

Liked by Lisa Lucier

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@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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@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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@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.

Liked by iceblue

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

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@rwinney

Oh my, yes, it heightens, provokes and intensifies pain. Proven fact, especially nerve pain. I speak from my personal experience.

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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.

Liked by rwinney, iceblue

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@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.

Liked by Lisa Lucier

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@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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@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

Jump to this post

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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@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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