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Recently diagnosed with Small Fiber Neuropathy - so many questions
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.
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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
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1 ReactionHi 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.
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?
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.
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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.
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/
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1 ReactionThank 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.
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1 ReactionSnake 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?
Is length dependent axonal neuropathy the same as small fiber neuropathy please? I am so confused.