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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 group.

burningfeetinphoenix | @burningfeetinphoenix | Sep 8, 2019

@burningfeetinphoenix …I am pretty new to this so I hope I am successful in starting a discussion. I have been researching other alternatives to conventional drugs and was looking for comments on these treatments that seem to have support from the medical community and have had some clinical trials albeit not necessarily double blind studies. Here they are:

Phenytoin Cream
DMSO cream
PEA capsules 600-1200 mg as per studies
PEA Cream – Can now purchase in the US!
Injections of Exosomes (my podiatrist wants to do these injections)
Calmare machine
Ketamine and Amitriptyline NP-H cream

Any comments welcome. Also, it appears most studies on alternatives are done in the Netherlands.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 8, 2019
In reply to @burningfeetinphoenix "@burningfeetinphoenix ...I am pretty new to this so I hope I am successful in starting a..." + (show)
@burningfeetinphoenix

@burningfeetinphoenix …I am pretty new to this so I hope I am successful in starting a discussion. I have been researching other alternatives to conventional drugs and was looking for comments on these treatments that seem to have support from the medical community and have had some clinical trials albeit not necessarily double blind studies. Here they are:

Phenytoin Cream
DMSO cream
PEA capsules 600-1200 mg as per studies
PEA Cream – Can now purchase in the US!
Injections of Exosomes (my podiatrist wants to do these injections)
Calmare machine
Ketamine and Amitriptyline NP-H cream

Any comments welcome. Also, it appears most studies on alternatives are done in the Netherlands.

Jump to this post

@burningfeetinphoenix, you started a new discussion perfectly. But…I actually moved your message to an already existing discussion on the exact same topic. I did this so we can collect everyone's ideas in the same place. I'll also be interested to see links to any studies that anyone has.

BurningFeet, have you had any success with these alternatives?

REPLY
3 replies
burningfeetinphoenix | @burningfeetinphoenix | Sep 8, 2019
In reply to @colleenyoung "@burningfeetinphoenix, you started a new discussion perfectly. But...I actually moved your message to an already existing..." + (show)
@colleenyoung

@burningfeetinphoenix, you started a new discussion perfectly. But…I actually moved your message to an already existing discussion on the exact same topic. I did this so we can collect everyone's ideas in the same place. I'll also be interested to see links to any studies that anyone has.

BurningFeet, have you had any success with these alternatives?

Jump to this post

I am taking PEA. Orderer PEA cream. Too early to tell…thx!

REPLY
nwhubert | @nwhubert | Sep 8, 2019

My remedy for burning feet is to spray them with Biofreeze. It dries quickly. I then put on soft roomy socks, take a 3 or 5mg. Melatonin and in a half-hour or so I drift comfortably off to sleep. I find that I have to alternate foot sprays fairly often and like to use Lidocaine and or whatever product I have on hand.

REPLY
2 replies
burningfeetinphoenix | @burningfeetinphoenix | Sep 8, 2019

Thx. I use Sarna lotion and run A/C and the Dyson fan on my feet…mine burn only at night or in the sun…

REPLY
1 reply
burningfeetinphoenix | @burningfeetinphoenix | Sep 8, 2019
In reply to @nwhubert "My remedy for burning feet is to spray them with Biofreeze. It dries quickly. I then..." + (show)
@nwhubert

My remedy for burning feet is to spray them with Biofreeze. It dries quickly. I then put on soft roomy socks, take a 3 or 5mg. Melatonin and in a half-hour or so I drift comfortably off to sleep. I find that I have to alternate foot sprays fairly often and like to use Lidocaine and or whatever product I have on hand.

Jump to this post

Will give it a try! Thx.

REPLY
burningfeetinphoenix | @burningfeetinphoenix | Sep 8, 2019
In reply to @nwhubert "My remedy for burning feet is to spray them with Biofreeze. It dries quickly. I then..." + (show)
@nwhubert

My remedy for burning feet is to spray them with Biofreeze. It dries quickly. I then put on soft roomy socks, take a 3 or 5mg. Melatonin and in a half-hour or so I drift comfortably off to sleep. I find that I have to alternate foot sprays fairly often and like to use Lidocaine and or whatever product I have on hand.

Jump to this post

I use Sarna lotion. Same ingredients.

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Sep 8, 2019
In reply to @burningfeetinphoenix "Thx. I use Sarna lotion and run A/C and the Dyson fan on my feet...mine burn..." + (show)
@burningfeetinphoenix

Thx. I use Sarna lotion and run A/C and the Dyson fan on my feet…mine burn only at night or in the sun…

Jump to this post

@burningfeetinphoenix My feet hurt just thinking about having a fan blowing on them.

Jim

REPLY
jager5210 | @jager5210 | Sep 8, 2019
In reply to @johnbishop "Hello @terryrose, Welcome to Connect. I have peripheral neuropathy. My diagnosis is idiopathic small fiber PN..." + (show)
@johnbishop

Hello @terryrose, Welcome to Connect. I have peripheral neuropathy. My diagnosis is idiopathic small fiber PN and I've had it for over 20 years but only bothered to get a diagnosis a few years ago. I only have numbness with my neuropathy. I'm sorry to hear about the pain with yours. There really is no cure for neuropathy but there are a lot of different treatments and therapies that can help relieve some of the worse symptoms and pain. I'm hoping other members will share their experience with you and you can learn what has helped them. I posted my story earlier on Connect with what I've found that has helped me here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You might be find the following discussions helpful in your search for something to help with the sensitivity in your feet.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
— https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
— https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Are you able to share what current treatment you are using?

Jump to this post

Hi John,

Thanks again for your work and sharing on this board. I've gotten in most of the supplements required to start the regimen you said helped you. I also saw my old neurologist Friday and he said he would get me a referral to Mayo. My question to you is whether it's worth it? I can't keep up with all the postings on this board but I do not recall anyone saying that their visit to Mayo really helped them. Please correct me if I'm wrong.

I seriously suspect my neuropathy is related to some long-standing gut issue. I'm wondering if I would be better served trying to get a referral to Dr. Hymen's Functional Medicine Clinic at the Cleveland Clinic?

Recently, all my issues have really flared up. My feet are now both painful and numb to the extent that walking is awkward and painful. I'm concerned about losing mobility. With your numbness in your feet, is your mobility impaired? What is the eventual resolution of SFN? Do you know?

Thanks again,
Barry

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Sep 8, 2019
In reply to @jager5210 "Hi John, Thanks again for your work and sharing on this board. I've gotten in most..." + (show)
@jager5210

Hi John,

Thanks again for your work and sharing on this board. I've gotten in most of the supplements required to start the regimen you said helped you. I also saw my old neurologist Friday and he said he would get me a referral to Mayo. My question to you is whether it's worth it? I can't keep up with all the postings on this board but I do not recall anyone saying that their visit to Mayo really helped them. Please correct me if I'm wrong.

I seriously suspect my neuropathy is related to some long-standing gut issue. I'm wondering if I would be better served trying to get a referral to Dr. Hymen's Functional Medicine Clinic at the Cleveland Clinic?

Recently, all my issues have really flared up. My feet are now both painful and numb to the extent that walking is awkward and painful. I'm concerned about losing mobility. With your numbness in your feet, is your mobility impaired? What is the eventual resolution of SFN? Do you know?

Thanks again,
Barry

Jump to this post

Hi Barry @jager5210, That is a really tough question for me. I can share my own experience with small fiber peripheral neuropathy and just the numbness. I think the supplements I'm taking have slowed or stopped the progression but it is really subjective on my part. I haven't had any additional testing done to prove it other than it's about the same as it was over three years ago when I was diagnosed with small fiber PN at Rochester Mayo. I only have numbness so when I asked about treatments my neurologist told me there were no medications or topicals that would help with the numbness which started my search and is how I found Connect. I'm 76 now and just had my right knee replaced in April and recovered quite well in part I believe in doing the pre-surgery and post surgery exercises. I still can't walk very far but it's more due to my lower back than my legs and I do watch my balance especially when I first stand up after sitting for awhile. I'm planning to try Myofascial Release Therapy as soon as I can find an accredited therapist close to my location or after I retire in December. I'm hoping it will help my lower back so that it's easier to walk.

You mention you suspect your neuropathy is related to a long-standing gut issue. May I ask why you believe that? I don't personally believe there is a cure or resolution for SFN other than treating the symptoms and improving the quality of ones life so if it were me and I thought it may be a gut issue that could be fixed I would definitely get a second opion from and health a major health facility like the Mayo Clinic, Cleveland Clinic or other major hospital.

I hope you find some answers that help you.

John

REPLY
1 reply
cwm1 | @cwm1 | Sep 8, 2019

@jager5210, I went to Mayo Jax for my chemo induced neuropathy. I was told the same as John. Nothing could be done as long as all I had was the numbness.

REPLY
donw | @donw200 | Sep 8, 2019
In reply to @johnbishop "Hello @terryrose, Welcome to Connect. I have peripheral neuropathy. My diagnosis is idiopathic small fiber PN..." + (show)
@johnbishop

Hello @terryrose, Welcome to Connect. I have peripheral neuropathy. My diagnosis is idiopathic small fiber PN and I've had it for over 20 years but only bothered to get a diagnosis a few years ago. I only have numbness with my neuropathy. I'm sorry to hear about the pain with yours. There really is no cure for neuropathy but there are a lot of different treatments and therapies that can help relieve some of the worse symptoms and pain. I'm hoping other members will share their experience with you and you can learn what has helped them. I posted my story earlier on Connect with what I've found that has helped me here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You might be find the following discussions helpful in your search for something to help with the sensitivity in your feet.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
— https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
— https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Are you able to share what current treatment you are using?

Jump to this post

Boston Scientific makes a SCS (spine cord stimulate) that helps/

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