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!

@burningfeetinphoenix

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

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

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@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

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@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.

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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.

Liked by rwinney

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@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.

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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.

Liked by iceblue

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@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.

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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.

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@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

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@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.

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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.

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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.

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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

Liked by iceblue

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@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"

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@jager5210

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.

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@jager5210….I am back from my clinician appointments and have reflected on your issue: stressors. You are unable to relate the fluctuations in your SFN symptoms with anything you recognize.

For me, this is a mind/body/spirit issue. I share Hippocrates' viewpoint that “the nature of the body can only be understood as a whole, for this is the great error of our day in the treatment of the human body, that physicians separate the soul from the body.”

The other point I pondered was this. If a stressor is a stimulus and stress is the response, and I have no stressors then what is causing the SFN pain I feel in my hands, etc? We do know that stress can load you up with adrenaline and other hormones that wear away at your cardiovascular system. We do know that it exacerbates pain.

So, @jager5210, would you feel comfortable sharing how your SFN symptoms fluctuate? Level of pain, and type of pain or discomfort? Area of the body? Length of pain….chronic, intermittent?

Thanks so much for hanging in there…..please have happiness this evening. Chris

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@artscaping

@jager5210….I am back from my clinician appointments and have reflected on your issue: stressors. You are unable to relate the fluctuations in your SFN symptoms with anything you recognize.

For me, this is a mind/body/spirit issue. I share Hippocrates' viewpoint that “the nature of the body can only be understood as a whole, for this is the great error of our day in the treatment of the human body, that physicians separate the soul from the body.”

The other point I pondered was this. If a stressor is a stimulus and stress is the response, and I have no stressors then what is causing the SFN pain I feel in my hands, etc? We do know that stress can load you up with adrenaline and other hormones that wear away at your cardiovascular system. We do know that it exacerbates pain.

So, @jager5210, would you feel comfortable sharing how your SFN symptoms fluctuate? Level of pain, and type of pain or discomfort? Area of the body? Length of pain….chronic, intermittent?

Thanks so much for hanging in there…..please have happiness this evening. Chris

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Hi Chris,

I like your point of view and I appreciate your willingness to help me focus in on what the 'stress issues' might be. I will have to get back to you in a day or three because my pain level is too high to sit at the computer and type intelligently. On the other hand, I wish I could compose my thoughts during these periods because I am more acutely aware of how complex the pain experience is for me. It's not a single or simple type of pain but a melody that changes by the minute until I have to find someway to minimize it like laying down. It's also not in a single area of my body but in my toes, feet, legs, fingers, hands, arms and sometimes my chest, face and tongue. And then there's my low back pain which provides a constant backdrop of pain for the neuropathy.

I had a visit with a new primary care physician who is in the Piedmont Group as opposed to Wellstar or Emory. He read to me that my neurologist wrote that I had SFN mediated by stress. Here's the interesting thing about this is that I've never been asked about stressors in my life by any doctor except for a cardiologist when I had a cardiovascular event 4 years ago.

My body is telling me my time is up in front of the computer. I do need to try and put into words all the different impressions I have of my pain but it's hard to do when I'm in pain.
Thanks for your concern.

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@jager5210

Hi Chris,

I like your point of view and I appreciate your willingness to help me focus in on what the 'stress issues' might be. I will have to get back to you in a day or three because my pain level is too high to sit at the computer and type intelligently. On the other hand, I wish I could compose my thoughts during these periods because I am more acutely aware of how complex the pain experience is for me. It's not a single or simple type of pain but a melody that changes by the minute until I have to find someway to minimize it like laying down. It's also not in a single area of my body but in my toes, feet, legs, fingers, hands, arms and sometimes my chest, face and tongue. And then there's my low back pain which provides a constant backdrop of pain for the neuropathy.

I had a visit with a new primary care physician who is in the Piedmont Group as opposed to Wellstar or Emory. He read to me that my neurologist wrote that I had SFN mediated by stress. Here's the interesting thing about this is that I've never been asked about stressors in my life by any doctor except for a cardiologist when I had a cardiovascular event 4 years ago.

My body is telling me my time is up in front of the computer. I do need to try and put into words all the different impressions I have of my pain but it's hard to do when I'm in pain.
Thanks for your concern.

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@jager5210, Thank you for the response. While you are resting, I want to try and be helpful…stay tuned. Let me know when you are ready. Be at peace with your body. Chris

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@kansasgal

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

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@kansasgal – Just picked up my compounded Phenytoin 10% topical! Will be starting it today. How is it working for you? LMK Pam

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@burningfeetinphoenix

@kansasgal – Just picked up my compounded Phenytoin 10% topical! Will be starting it today. How is it working for you? LMK Pam

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Pam, The pharmacy just let me know it's ready. Please let us know how it works for you too. Good luck! Kristen

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