Small Fiber Neuropathy: Book Recommendation

Hi .. I hope you’re feeling well and you won’t mind me asking what your symptoms were/are from SFN. I suspect I have it and scheduled a biopsy although my neurologist doesn’t feel it’s urgent . If my biopsy is positive I’ll buy the book.
Hope to hear back from you.

Hello! Don't mind at all. Definitely a progressive onset beginning 3 years ago and not being properly diagnosed until Feb of this year. Doctors and I ran in many different directions before I demanded that something was wrong neurologically. My underlying cause is B12 deficiency (I listed some more specific symptoms of B12 towards the bottom). It's a long list, here you go...

sharp sudden pain
stabbing
burning
aching
tingling
numbness
pins and needles
vibrations
topical sunburn feeling
cold/hot flush sensation
hot spots on feet
lumps under feet
restless leg
deep bone pain/aches
dizziness
sweating/freezing
exhaustion
heavy breathing
palpitations

I wish you all the best in finding a proper diagnosis. Just knowing, despite it sucking, will bring peace of mind and accountability of your symptoms.

Thank you . I’ve had many tests this summer with no known cause for my symptoms of foot pain, achy hands, and prickly stingy forearms. EMGs were fine . Sr said he doesn’t think I have SNF because I don’t have any burning symptoms.
Will vitamin shots help you?
Thanks for replying.

Your welcome. My relief currently comes from B12 injections every 2 weeks, IV Lidocaine infusions weekly, Norco 5mg, Lyrica CR and Duloxatine. I also take magnesium and liquid tumeric. I will say that it has been a work in progress and different for each person.

Yes I know . Good luck with your health. By the way .. the books title sounds so scary..I think I may be too nervous to read it . Having a lot of anxiety .
Lynn

One step at a time. Knowledge is power, but only when you are ready.
~Rachel

I have SFN in my left foot and progressing up left leg. So painful. I had punch biopsies done to confirm but right foot is starting same pain.
Is it common to have unilaterally and bilaterally?
I am due to have left hip replacement on November 8 and scared the SFN might get worse. The orthopedic surgeon didn't answer my question.
Any information would be appreciated.
Trish

Hi @trishh, I don't think the orthopedic surgeon can answer your question because they don't know the cause. That would be a better question for the neurologist that provided your original diagnosis - assuming they did a skin punch biopsy to confirm the neuropathy and they have an idea of the cause. I really have no medical training or background but believe that it depends on the cause of the nerve pain - damaged or compressed nerve somewhere above the leg.

I have idiopathic small fiber peripheral neuropathy that they think may be hereditary but they don't know. I was concerned of the possibility of a knee replacement making my neuropathy worse but it didn't. Pre-surgery I met with the surgical team and the anesthesiologist went through all of the risks and discussed the possibility of making the neuropathy worse but it didn't happen. I'm glad I had the knee replaced as it has given me some of my life back or a little more normalcy.

Here's an article from 2014 that discusses the risk. It might be a good conversation to have with the orthopedic surgeon on what they do to control inflammation after hip replacement surgery.

Mayo Clinic Study Finds Nerve Damage After Hip Surgery May Be Due to Inflammation: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-finds-nerve-damage-after-hip-surgery-may-be-due-to-inflammation/

Also, here's an article from 2018 that says the risk is minimal. I would want to make sure my surgeon has done a lot of hip replacements and is really good at it. Nerve injuries associated with total hip arthroplasty: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884042/

John I ordered the SFN book..it looks great. Thank you for listening and responding. I go to PT class next week to learn more post Op after hip replacement. My Lyme/immune doc said today healing may be longer but keep positive attitude.
SFN sure its painful!

I posted my symptoms on another thread where I e been suffering horribly with all these nasty symptoms for two years now. My neurologist in Tampa Florida did a few tests and blood work yet never ever mentioned doing this test for small fiber neuropathy biopsy (even though many of my symptoms align with SFN.

I asked him last week to please do this test to either rule in or rule out SFN.

He responded and said that neither he nor the other neurologists in his office do this test. WHY would a Neurologist not do this test?

He then referred me to or how I feel pushed me off on the Mayo Clinic in Jacksonville for possible Autonomic Nervous System malfunctioning.

Mayo called me this week and told me it is a ONE YEAR WAITING LIST.

I've asked my Primary Care doctor to assist me in finding a in network neurologist that will do this SFN test.

Two years in suffering YET still NO answers nor have needed tests like SFN has even been done yet.