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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!

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
Chris Trout, Volunteer Mentor | @artscaping | Oct 15, 2019
In reply to @jager5210 "Hi Chris, No stressors except my medical issues. Really! I'm very lucky in this regard. I..." + (show)
@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.

Jump to this post

@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

REPLY
1 reply
jager5210 | @jager5210 | Oct 16, 2019
In reply to @artscaping "@jager5210....I am back from my clinician appointments and have reflected on your issue: stressors. You are..." + (show)
@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

Jump to this post

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.

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Oct 16, 2019
In reply to @jager5210 "Hi Chris, I like your point of view and I appreciate your willingness to help me..." + (show)
@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.

Jump to this post

@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

REPLY
burningfeetinphoenix | @burningfeetinphoenix | Oct 18, 2019
In reply to @kansasgal "Pharmacy called, it'll be $16 with co-pay! Ready Wednesday or Thursday of this week. Pam, I'll..." + (show)
@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!

Jump to this post

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

REPLY
2 replies
kansasgal | @kansasgal | Oct 19, 2019
In reply to @burningfeetinphoenix "@kansasgal - Just picked up my compounded Phenytoin 10% topical! Will be starting it today. How..." + (show)
@burningfeetinphoenix

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

Jump to this post

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

REPLY
burningfeetinphoenix | @burningfeetinphoenix | Oct 19, 2019

@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

REPLY
1 reply
kansasgal | @kansasgal | Oct 19, 2019
In reply to @burningfeetinphoenix "@kansasgal - I will. Second day of treatment. So far so good. Feet did not burn..." + (show)
@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

Jump to this post

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

REPLY
burningfeetinphoenix | @burningfeetinphoenix | Oct 19, 2019

@kansasgal - I have socks on for the first time in two months. See photo! I'm optimistic...Pam
REPLY
terrydclaar | @terrydclaar | Oct 20, 2019
In reply to @burningfeetinphoenix "@kansasgal - Just picked up my compounded Phenytoin 10% topical! Will be starting it today. How..." + (show)
@burningfeetinphoenix

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

Jump to this post

PLEASE TELL ME THE COMPANY NAME WHO PRODUCES YOUR PHENYTOIN CREAM. THANKS, TERRY

REPLY
burningfeetinphoenix | @burningfeetinphoenix | Oct 20, 2019

@terrydclaar - You have to find a compounding pharmacy in your area or on-line that can make it for you. If you do get a prescription for Phenytoin 10 percent. A 60 gram supply is good for 30 days...Phenytoin is the active ingredient It is brand name Dilantin I assumed micronized for compounding. You can go on-line and find the compounding instructions...my pharmacist had to track down some of the compounding ingredients so it about 10 days or so. This is not a common request. I apply 2 times/day. Pam

REPLY
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