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Recently diagnosed with Small Fiber Neuropathy - so many questions

Posted by Maveric09 @maveric09, Feb 4, 2022

Hello, I am a 44-year male just diagnosed with Small Fiber Neuropathy (SFN). In addition to the numbness and tingling in my feet and hands, I started experiencing facial flushing, chest pain, orthostatic hypotension, and digestive issues last year. It took me nearly a year and more tests than I can count to finally arrive at a diagnosis.

I have so many questions, but the neurologist that diagnosed me is so hard to get a hold of. In fact, I haven't even met with her yet - she just called me to tell me the diagnosis and prescribed me Lyrica. To be fair, she's an expert on this condition, but there's one of her and so many of us.

Admittedly, I am scared. I hope I may share some of my questions with this group. Thank you in advance for your support. My questions are:

1.) Is there an association or definitive resource (like the American Heart Association) I can research?

2.) What are some of the health care facilities that do research on this condition? Would it help to come to the Mayo Clinic to speak with experts on this? It feels no healthcare practitioner knows what I am talking about when I mention SFN. I can't tell you how many doctors told me I had anxiety and suggested SSRIs.

3.) Will this get worse? Is it fatal? What else can I do to treat/manage symptoms? Are there alternative forms of treatment? The side effects of Lyrica seem pretty extensive, and the 'significant weight gain' seems like it would be something I would want to avoid given all the things I am experiencing.

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

janineca | @janineca | Feb 27, 2022
In reply to @trishh "We need educated physicians. Mine say same thing. " What does your Neurologist say". I just..." + (show)
@trishh

We need educated physicians. Mine say same thing. " What does your Neurologist say".
I just put ice on top numb pain but have support hose and circulation socks on top help with cold feet. Life is crazy with this. Its exhausting.
I had hip replacement surgery in November but the SFN pain is the worst, so constant.
Hoping we find help soon. My quality of life it 62 is terrible.

Jump to this post

Hello Trish. I'm just a little younger than you and am a full time student right now. I have another 1.5 years to go to get my degree. My quality of life isn't too good either, and it's a constant battle, esp right now with the demands of school. I am on campus at my school and have a commute of about 2.25 hours daily. I think this is also interfering with my pain levels, but there's no solution.
I wish people around me understood what it's like to have this disease. I hate it. Do you have any trouble with not feeling temperatures in your feet, legs or other parts of your body?
-Janine

REPLY
1 reply
trishh | @trishh | Feb 27, 2022
In reply to @janineca "Hello Trish. I'm just a little younger than you and am a full time student right..." + (show)
@janineca

Hello Trish. I'm just a little younger than you and am a full time student right now. I have another 1.5 years to go to get my degree. My quality of life isn't too good either, and it's a constant battle, esp right now with the demands of school. I am on campus at my school and have a commute of about 2.25 hours daily. I think this is also interfering with my pain levels, but there's no solution.
I wish people around me understood what it's like to have this disease. I hate it. Do you have any trouble with not feeling temperatures in your feet, legs or other parts of your body?
-Janine

Jump to this post

Hi Janine,
So sorry you have this but you are not alone here.
I have always had cold feet. That sweat? Weird. My body is confused but I suggested to my Neurologist that it may be affecting my autonomic nervous system, she agreed! Seems no one can help or understand
My Lyme disease doc explains so much as we think its and co-infections caused SFN back in 2000.
My body cannot work right with temperature changes.
School and driving are stressors for me (working on Nursing renewal).
I wear socks on summer even.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Feb 28, 2022
In reply to @janineca "Hello, I'm sorry to hear you have this diagnosis. I'm a 50-something year old female, and..." + (show)
@janineca

Hello, I'm sorry to hear you have this diagnosis. I'm a 50-something year old female, and was diagnosed with SFN (Small Fiber Neuropathy) almost 5 years ago. I take Lyrica, and it helps but try to only take what you need to function, as there is a lot of discussion about the negative effects of it. For me, it was some more brain fog and weight gain. I can answer some of your questions from my personal experience. I'm not a medical professional (yet. I'm in school right now for Occupational Therapist Assistant) but you can get a lot of information about SFN from the nih (.gov) website.
I clicked on your post because I'm trying to get some support for my increasing pain levels. I'm being woken up in the middle of the night with such a scare of what I'm feeling in both of my entire legs (bilateral). I need help with a strategy that others have tried (not another pill) to help with this new issue. I've also been diagnosed with Fibromyalsia, so I'm no stranger to pain.
Please reach out to me when you have a question or just need support. I'll do the best I can to support you.
-Janine

Jump to this post

Hello @janineca, Welcome to Connect. I'm happy to see that you have already connected with @trishh. Connect is a great place to meet other members with similar symptoms and learn what they have tried and what helps them. NIH is a good site to learn about small fiber neuropathy. My two favorite sites are:

-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/treatments/

You might want to read through the following discussion to learn what other members have shared --- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

@artscaping and others have found Myofascial Release Therapy (MFR) helpful for relieving neuropathy pain. There is a discussion on MFR -- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you heard of or tried MFR?

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Feb 28, 2022

I would like to share this 2019 post by @steeldove as it really has a lot of good information for those trying to understand their diagnosis and treatment options.
--------------------------
For those willing to wade through a medical article, here's one published in the latest edition of the Journal of the American Medical Association Neurology. https://neuropathycommons.org/sites/default/files/Oaklander_Nolano_SFN_2019.pdf It's a long article, but you may want to download it or print it to share with your doctor.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Feb 28, 2022

I also wanted to share another topic not well known to a lot of folks in pain. This is an interesting article on neuroplasticiity forwarded to me by @steeldove last year.

Chronic pain is surprisingly treatable — when patients focus on the brain:
-- https://www.washingtonpost.com/outlook/2021/10/15/chronic-pain-brain-plasticity/

Here's another discussion on the topic --- Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/

REPLY
Maveric09 | @maveric09 | Feb 28, 2022
In reply to @janineca "Hello, I'm sorry to hear you have this diagnosis. I'm a 50-something year old female, and..." + (show)
@janineca

Hello, I'm sorry to hear you have this diagnosis. I'm a 50-something year old female, and was diagnosed with SFN (Small Fiber Neuropathy) almost 5 years ago. I take Lyrica, and it helps but try to only take what you need to function, as there is a lot of discussion about the negative effects of it. For me, it was some more brain fog and weight gain. I can answer some of your questions from my personal experience. I'm not a medical professional (yet. I'm in school right now for Occupational Therapist Assistant) but you can get a lot of information about SFN from the nih (.gov) website.
I clicked on your post because I'm trying to get some support for my increasing pain levels. I'm being woken up in the middle of the night with such a scare of what I'm feeling in both of my entire legs (bilateral). I need help with a strategy that others have tried (not another pill) to help with this new issue. I've also been diagnosed with Fibromyalsia, so I'm no stranger to pain.
Please reach out to me when you have a question or just need support. I'll do the best I can to support you.
-Janine

Jump to this post

Thank you Janine. I appreciate your journey and empathize with you. I'm starting to experience leg pain as well. I'm on Lyrica albeit a low dose (25 mg 2x p/day). I'm taking Alpha Lipoic Acid and CBD to see if that helps. I also find relief with a percussion massager. It may be more a distraction but I'll take it. The chest pain, disgistive issues, and facial flushing has been the most common symptoms for me. The leg pain is new and I hope does not get worse.

REPLY
retired123 | @retired123 | Mar 6, 2022

Snake oil or not?? I'm reading about the ginger detox foot pads helping with some symptoms of neuropathy? Has anyone tried them? You know what they say about "too good to be true", but then there is also "no smoke without fire". What is the verdict?

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Karen | @fue | Mar 8, 2022

Is length dependent axonal neuropathy the same as small fiber neuropathy please? I am so confused.

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