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!

@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

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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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@kansasgal – I will. Second day of treatment. So far so good. Feet did not burn last night! I do have a few unhealed wounds due to loss of sweat glands…they burn a little upon application but it goes away…I am hopeful. Lmk how you do…Pam

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@burningfeetinphoenix

@kansasgal – I will. Second day of treatment. So far so good. Feet did not burn last night! I do have a few unhealed wounds due to loss of sweat glands…they burn a little upon application but it goes away…I am hopeful. Lmk how you do…Pam

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That's GREAT news! Just tried my first application.

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@kansasgal – I have socks on for the first time in two months. See photo! I'm optimistic…Pam

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