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!

Where can you get this cream?. Sounds like it’s worth a try.

REPLY
@burningfeetinphoenix

Thx! That is the study I was looking at…

Jump to this post

Where can you purchase this cream????

REPLY

Hi @peggyn…I have posted on a couple of topicals. The one I was able to order was PEA Cream. I do not have it yet but did get the 100% pure PEA from a company in the Netherlands. I was available on Amazon. The PEA cream I ordered from Vitalitus LLC. It has not arrived yet. It's brand name is Soothamide – PEA 2% Topical Cream. I have not been able to find Phenytoin cream which has positive studies. BTW PEA is abbreviation for Palmitoylethanolamide. You can read about it in a brief study in the British Journal of Clinical Pharmacology. This study covers the PEA capsules, not the topical. I am working up to 1200 Mg/day. I cannot post link on this site but look up "Palmitoyethanolamide for the treatment of pain: pharmacokinetics safety and efficacy" Revised May 20019. The authors are from Sweden. This paper is based on 16 clinical trials. Onepaper on the topical PEA was pucblished by the HIH. Look up "Therapeutic utility of palmitoylethanolamide in the treatment of neuropathic pain associated with various pathological conditions: a case series" Published 2012. I'll be posting more on this in the future I am certain…Pam

REPLY
@burningfeetinphoenix

Hi @peggyn…I have posted on a couple of topicals. The one I was able to order was PEA Cream. I do not have it yet but did get the 100% pure PEA from a company in the Netherlands. I was available on Amazon. The PEA cream I ordered from Vitalitus LLC. It has not arrived yet. It's brand name is Soothamide – PEA 2% Topical Cream. I have not been able to find Phenytoin cream which has positive studies. BTW PEA is abbreviation for Palmitoylethanolamide. You can read about it in a brief study in the British Journal of Clinical Pharmacology. This study covers the PEA capsules, not the topical. I am working up to 1200 Mg/day. I cannot post link on this site but look up "Palmitoyethanolamide for the treatment of pain: pharmacokinetics safety and efficacy" Revised May 20019. The authors are from Sweden. This paper is based on 16 clinical trials. Onepaper on the topical PEA was pucblished by the HIH. Look up "Therapeutic utility of palmitoylethanolamide in the treatment of neuropathic pain associated with various pathological conditions: a case series" Published 2012. I'll be posting more on this in the future I am certain…Pam

Jump to this post

Hi Pam
I'm Rachel
I have done research on this cream recently. Do use it exclusively for your feet and burning? Is your burning an internal burning pain or a burning heat? Is your pain from diabetic neuropathy, if you dont mind me asking? I get hot spots (hot to the touch) on my feet at night and sharp shooting pains but my calves are the biggest problem. They burn, pain, cramp, ache profusely and are debilitating. They put me down and take away walking. I'm wondering if this cream may work?

REPLY
@burningfeetinphoenix

Anyone using or know how to get Phenytoin (Brand name Dilantin) Cream? I read this study on it at link below. I have a link to the study but I cannot post links according to the rules…

Jump to this post

@burningfeetinphoenix
Phenytoin is an anticonvulsive drug and available by prescription. I'm guessing that a compounding pharmacy could make some… but, here again, by prescription. Here's a paper on drug repositioning for a phenytoin topical, specifically for neuropathy: http://www.remedypublications.com/pharmacology-and-pharmaceutics/articles/pdfs_folder/app-v3-id1144.pdf

REPLY

Hi @elizm…Thanks! I had read the referenced article already and this is where I got the idea for it. I just thought that since these Dr's had a patent for this topical for or the drug, that it would be commercially available somewhere…perhaps in Europe? You suggestion of having it compounded at a pharmacy is a good one. I think I saw instructions for that on-line but will check again. I am not giving up on my SFN! Pam

REPLY

From @burningfeetinphoenix…I found at least one place in the states that compounds Phenytoin and even some other drugs as well. Now I just have to get a prescription for it. Thanks again for the suggestion…Pam

REPLY
@rwinney

Hi Pam
I'm Rachel
I have done research on this cream recently. Do use it exclusively for your feet and burning? Is your burning an internal burning pain or a burning heat? Is your pain from diabetic neuropathy, if you dont mind me asking? I get hot spots (hot to the touch) on my feet at night and sharp shooting pains but my calves are the biggest problem. They burn, pain, cramp, ache profusely and are debilitating. They put me down and take away walking. I'm wondering if this cream may work?

Jump to this post

Hi Rachel…I have SFN which was diagnosed with a biopsy of my epidermis. My toes burn and the sides of my feet where the sole meets the top of the food. It is a sensitivity to heat…i.e. not from within. So for the cause is idiopathic. l As long as I am in A/C or have a fan blowing over the feet they do not burn. I have some numbness in my hands and lower legs. I am not taking any pain meds, only topicals like Sarna lotion that is for itching and sunburn. I have a bit of cramping in my arches and calves but so far not debilitating. I swim and hike my nearby mountains everyday still. I was only diagnosed two weeks ago after months of misdiagnoses my several doctors. I do have a high tolerance for pain as I am on a mission to do as much good in the world as I can…I may be time limited now and I have to keep going somehow…I also worked 29 years as an engineer solving some "wicked" problems so this problem qualifies as "wicked" and I intend to get to the bottom of it. I am also writing a book and need to finish it…lots of challenges ahead…This forum has been the invaluable to me. Pam

REPLY
@terryrose

My diagnosis is peripheral neuropathy. I have numb feet and numbness on one leg up to the knee. But at the same time the feet are so sensitive that I can't wear socks, even though the compression socks might work. Reason is that one small wrinkle feels like I'm on a rock or nail, etc.
Hoping some cure can be found.

Jump to this post

Have you heard of complex regional pain syndrome – CRPS? I have CRPS in both feet as well as SFN. Just a thought. See pain management frequently. Just had RFAs done in top of both feet. Looking for relief as well as looking forward to nerve to soles being injected. Spine is fairly well destroyed with arthritis and DDD. Don't think Dorsal Ganglion root can be done. Perhaps using my stimulator may be a way but am not sure I want any more surgery that CRPS can invade!

REPLY
@barbbie

Have you heard of complex regional pain syndrome – CRPS? I have CRPS in both feet as well as SFN. Just a thought. See pain management frequently. Just had RFAs done in top of both feet. Looking for relief as well as looking forward to nerve to soles being injected. Spine is fairly well destroyed with arthritis and DDD. Don't think Dorsal Ganglion root can be done. Perhaps using my stimulator may be a way but am not sure I want any more surgery that CRPS can invade!

Jump to this post

I set here day after day with no relieve from nerve pain ! I don't think I can take another day of it! Do people in so much pain they can't think straight go to hell if they end their own life???

REPLY

@resawaller
I hear your plea, and I can relate to your despair. Chronic pain does contribute to depression.

Firstly, take some action. Order some Palmitoylethanolamide (PEA) from Amazon. Take 400 mg. in the morning, midday, and bedtime. Also order some Topricin Fibro Cream from Amazon and use it whenever. Both are natural products which get me through the tough days (which are most days). The PEA will take about 3-4 weeks for you to feel a BIG difference, so don't give up on it. Will it work for Regional Pain Syndrome the way it does for peripheral neuropathy pain? I don't know. I have chemo-induced PN and it works for me.

There also is evidence that taking 2 grams/day (and not more) of a good Omega-3 fish oil can help with depression. Also available on Amazon.

Secondly, I am assuming that, if you believe in hell, then you believe in God. The thing about faith is trust in God. Perhaps your post here is God speaking to you… telling you to share your concerns with others. And the thing to remember about God is that s/he loves you and all her/his creations more than anything that we can imagine. I believe that with all my heart and mind. I personally don't believe that God allows bad things to happen to people, but God does help us get through our crises and afflictions. Ask for God's help. Keep asking.

Thirdly, and I'm speaking again for myself, it has helped for me to get out into the community and help others who are suffering more than I am… and really listening to them… making good use of the compassion we are acquiring from our own suffering.

And lastly, but certainly not least, a good psychologist or pain therapist is helpful. Ask your PCP or church minister for recommendations. Cognitive behavior therapy is very helpful, as well as meditation, controlled breathing, etc.

Realize that you are in a deep funk and be determined to climb out of that hole. Life is so precious… YOU are so precious.

Blessings, Liz

REPLY
@burningfeetinphoenix

Hi Rachel…I have SFN which was diagnosed with a biopsy of my epidermis. My toes burn and the sides of my feet where the sole meets the top of the food. It is a sensitivity to heat…i.e. not from within. So for the cause is idiopathic. l As long as I am in A/C or have a fan blowing over the feet they do not burn. I have some numbness in my hands and lower legs. I am not taking any pain meds, only topicals like Sarna lotion that is for itching and sunburn. I have a bit of cramping in my arches and calves but so far not debilitating. I swim and hike my nearby mountains everyday still. I was only diagnosed two weeks ago after months of misdiagnoses my several doctors. I do have a high tolerance for pain as I am on a mission to do as much good in the world as I can…I may be time limited now and I have to keep going somehow…I also worked 29 years as an engineer solving some "wicked" problems so this problem qualifies as "wicked" and I intend to get to the bottom of it. I am also writing a book and need to finish it…lots of challenges ahead…This forum has been the invaluable to me. Pam

Jump to this post

Thank you for your response Pam. It's great to have a problem solving engineer on board! More power to you!! I will be curious to hear how the PEA cream works for your symptoms. Good luck and keep us posted.
Rachel

REPLY
@resawaller

I set here day after day with no relieve from nerve pain ! I don't think I can take another day of it! Do people in so much pain they can't think straight go to hell if they end their own life???

Jump to this post

I guess a lot of us are where you are or have at least been there. Here is a reply I received from Dr. Eben Alexander. He is famous for his near death experience and his highly accomplished medical career…Hope it helps.

Dear Barry,

Dr. Eben Alexander asked me to send you his personal note below. In addition, we have some information from people who have had NDEs after a list of resource numbers at this page on his website:
http://ebenalexander.com/resources/faq/#toggle-id-5
Blessings,
Elizabeth Hare
Assistant to Dr. Eben Alexander
————–

September 1, 2019
Dear Barry,

I’m sorry to hear of your pain and suffering. I’ve come to realize that as a general principle, suicide is to be avoided. The one exception is with unbelievable pain and suffering — if there are no medical or psychological interventions to treat severe pain and suffering, that is unremitting over months/years, one can act on humanitarian grounds to facilitate euthanasia. I cannot tell you how strongly I would still argue against suicide, because I have seen many patients in pain from various conditions who later had some resolution of their pain, even though they spent weeks or months thinking they would be stuck with unremitting pain for the rest of their lives. But from my experience there is no “punishment" that one would ever encounter for suicide in that setting.

Have you tried sacred acoustics tones/meditation to alleviate pain? I would urge you to give that a try. I have seen people accomplish some pretty amazing things with these tones, including getting rid of such unbearable pain. Go to sacredacoustics.com to learn more and obtain some tools.

Your well-being is in my thoughts and prayers.

Best,

Eben

REPLY
@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

The DMSO cream works really well on my burning feet. I was using very expensive compound cream before and this seems to do just as well.

REPLY
@somisgirl

The DMSO cream works really well on my burning feet. I was using very expensive compound cream before and this seems to do just as well.

Jump to this post

Where do you buy it at & is it expensive?

REPLY
Please login or register to post a reply.