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I was recently diagnosed with Small Fiber Polyneuropathy recently after 12 years of symptoms, testing, medications, doctors, specialists etc. I live in NY but finally went to Brigham and Womens Hospital in Boston for help. For the past 12 years I have dealt with many of the same symptoms described here: neuropathy (legs, feet, arms, hands), heart (tachnycardia), lung, bladder retention, severe constipation, sluggish digestion, sleep disorders, temperature intolerance (heat), numbness, tingling, pins/needles, electric shocks, breathing issues - you name it. Not one dr could diagnose the issue until I had autonomic tesitng and skin biospies to determine I had autonomic abnormalities and small fiber. I have been on high does of gabapentin for years then switched to Lyrica, cymbalta, regelan, heart and blood pressure meds. All symptom control but no real solutions for all that goes on on a daliy basis. I also have bouts of extreme weakenss and fatigue and I am now experiencing muscle stiffness and cramping in my legs and arms and feel like it is all just getting worse. Any suggestions or advice is welcome and appreciated.
Replies to "I was recently diagnosed with Small Fiber Polyneuropathy recently after 12 years of symptoms, testing, medications,..."
@obackus Thank you for sharing your story. You hit the nail on the head by saying all symptom control, no real solutions.
Your symptoms seem to be running rampant. I was diagnosed with SFN as well, however I had more going on, similar to what you describe.
Here is what I discovered about myself. I had Central Sensitization Syndrome. CSS an umbrella to many diagnoses and symptoms. It's an upregulation of the Central Nervous System and Peripheral Sensory System. My light bulb moment came from watching the following video by Mayo Clinic's Dr. Sletten:
Do you mind letting me know your thoughts on the video? Does any of it resonate with you?
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Hello @obackus, Welcome to Connect. I think most of us with some form of neuropathy have asked that question about treatments being all symptom control and no real solutions. In my case of having idiopathic small fiber PN with no pain only numbness I guess I should consider myself lucky that there are no treatments that relieve the numbness symptoms. That's what brought me to Connect back in 2016 when I was looking for something to help. I started looking at cellular nutrition after reading Dr. Terry Wahls story about how she was able to roll back her MS symptoms through diet which got me thinking why not neuropathy also. Her story is pretty amazing even though she still has MS - https://terrywahls.com/about/about-terry-wahls/
I started looking a supplements that would support nerve growth and healing. Eventually I found a group that was taking a lot of the same supplement that I had started with and I joined them on Facebook. That was back in 2016. I shared my story in another discussion here -- https://connect.mayoclinic.org/comment/310341/
There are two sites that I find really good research and reference material on:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/treatments/
The Foundation for Peripheral Neuropathy also has a document with a list of neuropathy supplements which got me started:
Complementary and Alternative Treatments:
-- https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf
@artscaping and @rwinney and others may also have some suggestions for you. Have you looked into any type of alternative or complementary therapy to see if it might help?