Just Diagnosed with Small Fiber Neuropathy

Pegg, My heart goes out to you. I understand the burning only too well. Sometimes I just feel like taking my shoes off, and putting my bare feet in the snow. Neuropathy is just treacherous. I do have one thing that helps my feet with burning, stinging, stabbing aching...I use a CBD salve I rub on my feet, and it helps the pain and burning. It is from the Ananda Hemp company. They sell CBD products, but are legal, because the do not use the part of the plant used to make marijuana. Anyway, this salve helps with immediate, very bad burning and pain. It is Ananda Spectrum Salve 125, topical cream. They have only one type of cream on their website, you cannot miss it. I have tried many types of creams, laser, the typical neuropathy pain drugs, but this salve just saves me. For me, it lasts about an hour or so. Then I reapply if needed. The cream costs about 25 bucks, and is worth every penny. Shipping in a few day. Best regards, Lori Renn

@frankie7 Hello Ann, thank you for your private message. I chose to answer you here so others may benefit. I am sorry to hear of your SFN diagnosis. It's never pleasant to learn of, but can be managed. When I first began to learn of my SFN, I referred to a book co-authored by my neurologist and a Mayo Clinic doctor, as well as others prominent doctors. The book is called Small Nerves, Big Problems. Its a helpful guide to learn about small fiber neuropathy. Knowledge is power and I recommend learning all you can:
https://www.amazon.com/Small-Nerves-Big-Problems-Comprehensive/dp/B07K6Z1YCN
Nerve medication such as Gabapentin is a first line defense, as you already know and are tweaking. I adjusted to Pregabalin (Lyrica) and am thankful for its benefits although, its important to understand these medications are not miracle workers and the rest may be up to us to manage.

In addition to SFN I have a chronic pain syndrome called Central Sensitization Syndrome (CSS) which has mirroring symptoms to neuropathy, and then some. I have had CSS since childhood but was undiagnosed until last year. CSS was gaining steam around the time I was diagnosed with SFN from a B12 deficiency. This created mitigating circumstances and confusion as to what was really going on with me. I thought SFN was causing everything, but it was not. This confusion lead me to the Mayo Clinic Pain Rehabilitation Center to learn a better, more productive way to live in chronic pain:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
What I learned is valuable to any chronic pain sufferer...there is no magic pill, no curing help from doctors, no miracle fix. SFN may always be chronic, or as my neurologist once told me, nerves may regenerate over time. Its my hope Ann, that your nerves may settle down as time goes on, but keep in mind neuropathy can simply be age related as well. In any case, here we are trying to feel better. How can we do that? Lifestyle change.

- Physically active: daily stretching, cardio, strength conditioning (all moderate accordingly).

- Healthy diet: learn what foods to avoid and what foods to increase.

- Healthy sleep: create healthy sleep habits, go to bed and get up the same time each day. Naps to 20 minute minimum.

- Mental health: speak to a therapist if you must for a healthier mind, create a gratitude journal, focus on what you do have not what you don't.

- Behavioral changes: stop pain behaviors -anything you do, say or think that reminds you of pain. This is called accessing the network (your central nervous system) and creates more pain.

- March before you feel like it: create a schedule and stick to it, hold yourself accountable.

- Distraction: we all need distraction from pain - humor, family, friends, movies, books.

- Modification and moderation: when in pain we can still do things but we may need to find a smarter way to do them, we may need to set time limitations.

- Minimize or eliminate unnecessary meds

- Set goals for yourself, even if small, then reward yourself for meeting your goal

- Work on coping skills - journal your positives.

- Relaxation: this should be scheduled throughout the day along with diaphragmatic breathing.

- Difficult day plan: write it out and give yourself grace

- Mindfulness: stay in the moment, work on the next 5 minutes

I've thrown a lot at you Ann, and believe me I know this is not easy. Chronic pain management is a challenge that takes discipline and perseverance. I hope I have given you hope, and ways to think about your path forward. What other ways might I be able to help? Do you mind letting me know how you are currently managing overall?

Thank you for this helpful information. My husband, Jim, has just started this unrelenting, stabbing pain the last two months from an open sore on side of diabetic foot. His PN is so bad he can hardly walk or sleep. He has bought 4 different pairs of shoes and none are comfortable! Does anyone have any suggestions?

@frankie7 Hello Ann, thank you for your private message. I chose to answer you here so others may benefit. I am sorry to hear of your SFN diagnosis. It's never pleasant to learn of, but can be managed. When I first began to learn of my SFN, I referred to a book co-authored by my neurologist and a Mayo Clinic doctor, as well as others prominent doctors. The book is called Small Nerves, Big Problems. Its a helpful guide to learn about small fiber neuropathy. Knowledge is power and I recommend learning all you can:
https://www.amazon.com/Small-Nerves-Big-Problems-Comprehensive/dp/B07K6Z1YCN
Nerve medication such as Gabapentin is a first line defense, as you already know and are tweaking. I adjusted to Pregabalin (Lyrica) and am thankful for its benefits although, its important to understand these medications are not miracle workers and the rest may be up to us to manage.

In addition to SFN I have a chronic pain syndrome called Central Sensitization Syndrome (CSS) which has mirroring symptoms to neuropathy, and then some. I have had CSS since childhood but was undiagnosed until last year. CSS was gaining steam around the time I was diagnosed with SFN from a B12 deficiency. This created mitigating circumstances and confusion as to what was really going on with me. I thought SFN was causing everything, but it was not. This confusion lead me to the Mayo Clinic Pain Rehabilitation Center to learn a better, more productive way to live in chronic pain:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
What I learned is valuable to any chronic pain sufferer...there is no magic pill, no curing help from doctors, no miracle fix. SFN may always be chronic, or as my neurologist once told me, nerves may regenerate over time. Its my hope Ann, that your nerves may settle down as time goes on, but keep in mind neuropathy can simply be age related as well. In any case, here we are trying to feel better. How can we do that? Lifestyle change.

- Physically active: daily stretching, cardio, strength conditioning (all moderate accordingly).

- Healthy diet: learn what foods to avoid and what foods to increase.

- Healthy sleep: create healthy sleep habits, go to bed and get up the same time each day. Naps to 20 minute minimum.

- Mental health: speak to a therapist if you must for a healthier mind, create a gratitude journal, focus on what you do have not what you don't.

- Behavioral changes: stop pain behaviors -anything you do, say or think that reminds you of pain. This is called accessing the network (your central nervous system) and creates more pain.

- March before you feel like it: create a schedule and stick to it, hold yourself accountable.

- Distraction: we all need distraction from pain - humor, family, friends, movies, books.

- Modification and moderation: when in pain we can still do things but we may need to find a smarter way to do them, we may need to set time limitations.

- Minimize or eliminate unnecessary meds

- Set goals for yourself, even if small, then reward yourself for meeting your goal

- Work on coping skills - journal your positives.

- Relaxation: this should be scheduled throughout the day along with diaphragmatic breathing.

- Difficult day plan: write it out and give yourself grace

- Mindfulness: stay in the moment, work on the next 5 minutes

I've thrown a lot at you Ann, and believe me I know this is not easy. Chronic pain management is a challenge that takes discipline and perseverance. I hope I have given you hope, and ways to think about your path forward. What other ways might I be able to help? Do you mind letting me know how you are currently managing overall?

Hi Rachel: Thank you so much for your helpful answers and lifestyle suggestions. I appreciate you taking the time to map out concrete instructions as a road map for me and others to manage SFN. I hope you are feeling better with all the challenges you've faced for so many years. I especially look forward to reading the book. How nice of you to even provide the link!! Many, many thanks for your generosity. Sincerely--Ann

Greetings….1st time poster. As we know, neuropathy and especially SFN, can be very complex with no one size fits all…..which brings me here. I started having some slight numbness in the balls of both feet in March, unfortunately it began within a couple days of a certain shot that’s popular these days. 🙁
It didn’t go away and progressed to some of the usual sensory type symptoms. Had all the blood work done and EMG, all normal. PCP believed A1C that got abnormally high in January may have caused it….I was never diagnosed diabetic but pre diabetic for a couple years, that has all been resolved now (5.3 A1C).

Skin punch biopsy was done in October and showed no fiber density loss but did mention the presence of “large axonal swellings” which pathologist said wasn't diagnostic but can be seen in some “early or very mild SFN”. I know that’s pretty technical but had anybody had those morphological changes noted? To further confuse things, my feet get cold a lot (actually cold to the touch) which supposedly when it’s neuropathy they are cold to me but not to the touch. Lastly, I often wake up in the morning with ZERO sensory symptoms in my feet….literally none. I am convinced something else is afoot (I’ll be here all night folks).

Any thoughts?