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!

@pfbacon

I don't understand "nerves growing back". My neurologist said that my nervous system is dying (parts of us die as we get older, with some people it's the heart or liver, kidneys or worse yet: the brain). Science hasn't yet devised a way to resurrect a dying nervous system. Medical researchers used to think that neuropathy was just for diabetics but not any more — there are too many people with neuropathy who don't have diabetes. It sounds like it doesn't have to have any cause other than "aging". More will be revealed to us as research continues. Peggy

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My Neurologist said it is so common among older folks that it's also known as 'Greying of the Nerves'….

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@helennicola

Great news @burningfeet! I never had the biopsy done, my neuro didn’t think it would change her treatment which was gabapentin for the pain. She is willing to do the test if I request but I also do not see how the results will effect any change in treatment for me. FYI, Dr. Levine does have a financial interest in one of the few labs available for testing the biopsies; from everything I’ve read, my knowing the cause will not change the treatment of idiopathic neuropathy unless you are found not to have neuropathy at all such as in your case. Hope your feet continue to improve. Helen

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@helennicola – @burning feet here again. Yes I do know Dr. Levine has a financial interest in Corinthian Reference Lab. So what I would say about all this is either 1. The first biopsy was not done correctly or 2. The first biopsy was correct and the second showed the nerves grew back. There are other possibilities 3. 4. etc… too, but let's assume one of these two. The Dr. said and I quote "The burning feet was due to SFN (he also said the first biopsy was done incorrectly so how would one know?) due to a virus or something that went away". The second biopsy showed this was true (3. or this second biopsy could have been done incorrectly also). It is my understanding that small fiber nerves can grow back but take a long time to do this and usually because whatever was causing the SFN was removed from the equation…certainly not in one month however. I am attaching the report from Corinthian. My original biopsy showed 1.3/mm in the foot and 0.3/mm in the lower leg. The one result was slightly lower than normal but not low. Those "normal" ranges are age adjusted as these nerves do diminish with age. The significantly versus mild for the lower thigh comments in the report is confusing and I will discuss this discrepancy with the Dr. at my next appointment. I did get color photos of the epidermis and dermis with this report but they are difficult to see…So, my experience with the biopsy technique has not been conclusive so perhaps it is not worth having as you suggest…Pam

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@iceblue

My Neurologist said it is so common among older folks that it's also known as 'Greying of the Nerves'….

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@iceblue – @burningfeet here. Yes, SF nerves diminish with age. Samples would be age adjusted and there is a normal range as a fucntion of age. Pam

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Interesting … I'm glad Mayo Clinic hosts this web loop so we can pass around information and the latest news,

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My latest email from the Foundation for Peripheral Neuropathy contained a really great source of education information links that I thought I would share with my fellow members.

Foundation for Peripheral Neuropathy – e-Catalog of Articles on Peripheral Neuropathy
https://www.foundationforpn.org/wp-content/uploads/2020/02/01.29.2020-Website-eCatalog.pdf

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@johnbishop

Hello @chandyjohn1, Welcome to Connect. I have no medical training or background but I think peripheral neuropathy and small fiber neuropathy have one thing in common – small fiber nerves. I shared a short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed in an earlier post in this discussion. Here is a link to the post with the video: https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/?pg=8#comment-332835

Have you been diagnosed with small fiber neuropathy or peripheral neuropathy?

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My doctor has diagnosed me with diabetic peripheral neuropathy.

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I had my first baby in February 2017 and started feeling symptoms (pain, tingling in feet) about 3 months afterward. We’ve done all kinds of blood tests and everything keeps coming back normal. You’ve never seen someone so disappointed at a normal result (except ruling out MS, of course!). I’ve gone to osteopaths, chiropractors, physical therapy, done lumbar, neck and brain MRIs — everything looks fine. I’ve been to two different neurologists. They both think it’s probably small fiber neuropathy, though I haven’t done the skin biopsy yet. The pain in my feet is getting much worse and it’s going up both legs. Then this past Saturday, I started feeling it in my hands and arms. Happened kind of quickly and it’s so much more bothersome than the feet and legs. I have a 3 year old, I need my hands. Will there be a day when I can’t feel her lovely, soft skin? Will I not be able to play the piano anymore? I’ve struggled with depression, anxiety and OCD since I was a child. You may imagine the panic I’m feeling now that I’m adding yet another form of torment to my life. I’m 37 years old and I feel like my life is over.

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@johnbishop

My latest email from the Foundation for Peripheral Neuropathy contained a really great source of education information links that I thought I would share with my fellow members.

Foundation for Peripheral Neuropathy – e-Catalog of Articles on Peripheral Neuropathy
https://www.foundationforpn.org/wp-content/uploads/2020/02/01.29.2020-Website-eCatalog.pdf

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Thank you for this url on neuropathy. There are so many instructive articles from medical marijuana to drugs that treat our pain.

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@carrie4803

I had my first baby in February 2017 and started feeling symptoms (pain, tingling in feet) about 3 months afterward. We’ve done all kinds of blood tests and everything keeps coming back normal. You’ve never seen someone so disappointed at a normal result (except ruling out MS, of course!). I’ve gone to osteopaths, chiropractors, physical therapy, done lumbar, neck and brain MRIs — everything looks fine. I’ve been to two different neurologists. They both think it’s probably small fiber neuropathy, though I haven’t done the skin biopsy yet. The pain in my feet is getting much worse and it’s going up both legs. Then this past Saturday, I started feeling it in my hands and arms. Happened kind of quickly and it’s so much more bothersome than the feet and legs. I have a 3 year old, I need my hands. Will there be a day when I can’t feel her lovely, soft skin? Will I not be able to play the piano anymore? I’ve struggled with depression, anxiety and OCD since I was a child. You may imagine the panic I’m feeling now that I’m adding yet another form of torment to my life. I’m 37 years old and I feel like my life is over.

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Hello @carrie4803, Welcome to Mayo Clinic Connect. Neuropathy can be the pits, especially when you can't get the answers you need. It also adds to your anxiety and fear of the future. You are not alone in how you feel or with the symptoms you have. The best suggestion I have is to learn as much as you can about your health condition and read the experiences of others who have shared what has helped them here on Connect. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Did your doctor offer any treatments or therapy for your symptoms?

I'm hoping @rwinney, @artscaping, and other members can share what helps them get through the day.

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@carrie4803

I had my first baby in February 2017 and started feeling symptoms (pain, tingling in feet) about 3 months afterward. We’ve done all kinds of blood tests and everything keeps coming back normal. You’ve never seen someone so disappointed at a normal result (except ruling out MS, of course!). I’ve gone to osteopaths, chiropractors, physical therapy, done lumbar, neck and brain MRIs — everything looks fine. I’ve been to two different neurologists. They both think it’s probably small fiber neuropathy, though I haven’t done the skin biopsy yet. The pain in my feet is getting much worse and it’s going up both legs. Then this past Saturday, I started feeling it in my hands and arms. Happened kind of quickly and it’s so much more bothersome than the feet and legs. I have a 3 year old, I need my hands. Will there be a day when I can’t feel her lovely, soft skin? Will I not be able to play the piano anymore? I’ve struggled with depression, anxiety and OCD since I was a child. You may imagine the panic I’m feeling now that I’m adding yet another form of torment to my life. I’m 37 years old and I feel like my life is over.

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Hello Carrie @carrie4803 and welcome to Connect. Well, you have really spoke loud and clear for us all to hear and understand what you are going through. I'm so happy you found this site.

Unfortunately, neuropathy comes in all shapes and sizes, does not discrimate against sex or age and has a mind of its own for each individual. Mine began at age 46. My babies were just about grown unlike yours. ☹

I feel your pain and confusion and frustration. It's maddening for sure but, there is hope! Hope lies in the fact that neuropathy will not kill us, but make our lives more challenging.

As far as the challenges…they come both physically and mentally as you have experienced. I needed to learn alot about myself through the challenges and find some (even if extremely hard) good to take away.

Listen, we are here for you and will understand when no-one else may. We are are here for you to learn "tricks of the trade". We are here to comfort and support you on your darkest day.

My wish for you is that you have the skin biopsy to lay your mind to rest. Clarity helps the acceptance process. Please fight hard to be your own advocate. Do your research and learn your disease. Help yourself bc you know your body best.

When you have time away from the high demands of being a Mother, investigate the threads and links here. Others life experiences may offer so much more than the internet.

I'm here, we're here! It was brave of you to reach out to us… a great first step. Keep persevering Carrie, your sweet little one needs a strong mommy and you can do this.

All the best to you and please reach out anytime. Hope today is a pleasant one for you. 🌻

Be well -Rachel

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@carrie4803 Id like to ad my welcome and know you have found a good place as Racheal said . We listen ,we care and we try to help with our own toolbox of tricks to help us. Neuropathy is maddening but there are a lot of things to help you. I have found Epsom Salt soak or on washcloth helps a lot . rubbing in hemp oil also after the E.S. that is one example I can give you . God bless you keep trucking advocate for yourself and don't let neuropathy define who you are .

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@lioness

@carrie4803 Id like to ad my welcome and know you have found a good place as Racheal said . We listen ,we care and we try to help with our own toolbox of tricks to help us. Neuropathy is maddening but there are a lot of things to help you. I have found Epsom Salt soak or on washcloth helps a lot . rubbing in hemp oil also after the E.S. that is one example I can give you . God bless you keep trucking advocate for yourself and don't let neuropathy define who you are .

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Preach madam Lioness!!!

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