Idiopathic Small Fiber Neuropathy Research

What are some of the causes of small fiber neuropathy, can the degeneration in my cervical spine becauseing it were I have all these strange symptoms neurological symptoms? I know I've had so many tests already from diabetes test and test looking for cancer and MRIs at the brain so much blood work up and everything's come back normal but I've had a lot of issues with pins and needles in my extremities and sharp stabbing pains in my feet and sometimes numbness in my extremities specifically my lower legs by calves my feet sometimes one side of my face will feel numb one part of my index finger on my right hand will feel numb but then I'll get the sensory overload sensation where it's almost like an adrenaline rush but they've checked my adrenal glands they've checked my blood work up for metanephrines and nor metinephrines and everything's been normal.

I was referring. a tad tongue in cheek, to the writer who mentioned Bill Clinton warning people not to discontinue statins. The caveat could have included 'without working with your doctor.' But statins are not drugs that, like some drugs including many for osteoporosis, can leave one worse off for having taken them if they do discontinue them. I know of cardiologists whose patients take 'statin breaks' occasionally. People who change statins, or try them and cannot tolerate them. Statins have an off-ramp if one needs it. Some drugs do not. And many people ended up needing the surgery he had despite being on statins. Statins usage is hardly a necessary-and-suffiecient variable that prevents later surgical intervention.

Quite correct

Hi magnum52, I am wondering if you got any help from your visit to the Mayo Clinic last year ? I was diagnosed with SFN in 11/18 and it’s gotten so severe that I have an intrathecal pump giving me Dilaudid all day long. Even this only gives me partial relief, I still have severe burning, horrible ‘freezing’ feeling and numbness in my feet and legs much of the time. I tried all the oral medications used for nerve pain before I went to the pump.
Hope they were helpful and looking forward to your reply.

A lot of my symptoms are similar to yours. I also went through a multitude of tests including for diabetes. All were negative. I recently went to a foot clinic where the doctor did an ultrasound on my feet. There was low blood flow in my feet even though an ultrasound of my legs showed ample flow. I encourage you to get an ultrasound of your feet. This doctor prescribed EB-N6 which is showing results. I also have/had “sensory overload sensation where it's almost like an adrenaline rush”. Blood vessels have valves in them that open and shut to help regulate blood flow. I think that is what you are feeling since your body is working hard to heal and compensate. Now that I am taking EB-N6 that almost never happens. It is closing in on 3 years but it was only July of 2021 since the diagnosis of SFN. Now that I know what it is, I am looking for help. For me there possibly is endovascular surgery on the table. With the supplement I have been taking for appx. 1 month I have reduced my Pregabalin by 1/3. The doctor I found was in AZ so I did have to travel. So much has gone into these 3 years that I have left out many details and just touching only on my journey highlights. I hope this helps or at least gives you hope.

I went there only to confirm my diagnosis of idiopathic small fiber neuropathy. I knew going in that they would not be able to offer me any treatment with that diagnosis. They confirmed the diagnosis with no treatment offered. I am currently involved in a 7 day trial of a DORSAL ROOT GANGLION stimulator for my neuropathy. It is made by Abbott Neuromodulation, and they are the only company that makes a DRG stimulator. You do the trial first and if it works, they will implant the stimulator usually in your lower back. It’s all done on an outpatient basis. For some, it is amazing. It’s helping some. I am still adjusting the settings daily on it for optimum results. I assume your neuropathy is idiopathic as well. Unfortunately, there is little to be done for ISFN outside of the usual drugs, blocks, epidurals, etc. For a lot of people they are useless. You need to research the DRG stimulator. Tons of stuff out there about it.

Look into a dorsal root ganglion stimulator. For some folks, it’s a Godsend.

I have been diagnosed with SFN since 2017 with no relief in pain. Actually, it gets worse and affects so much of my body. Two things I hope that someone can relate or inform. 1) The balls of my feet hurt so bad that I cannot stand very long and sitting is equally uncomfortable due to burning in legs and hips. I feel like its just a matter of time before I will be on some sort of scooter and/or bed ridden. 2) Any time I lay on my side my ears burn so bad when anything touches them. I use the corner of my pillow under just the top side of my head to sleep. I'm absolutely miserable and don't know what to do.

Welcome @shltnyoung, I am sorry to hear that you have not found any relief for your small fiber neuropathy symptoms and it's going on 5 years. I'm wondering if you might find some benefit in reading what other members have shared in this discussion:

Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

Neuropathy websites you might find helpful:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

It's easy to get down in the dumpers when you are hurting so much. Have you done any research into your condition to see if there might be other types of treatments that might help provide some relief?

Thank you, I have an appointment with a neurosurgeon that does many Type of stimulators and I will mention the type you had. Thank you again great information