About

If you have stumbled upon this website, chances are either you, or someone you know has been affected by Small Fiber Neuropathy.

Given that around half of cases are considered to be “idiopathic” (meaning there is “no known cause”) by conventional medicine, it shows there is much more to be discovered and learned about this condition.

This website is meant to be a chronicle of my personal journey through this condition, as well as my thoughts and observations along the way.

I was officially diagnosed in July of 2016, after having my symptoms misdiagnosed as being “anxiety” for more than 2 years.   In my case, it appears to be non-length dependent, meaning it effects my entire body.   I cannot tell you what a frustrating process it is when you are in pain and know there is a serious problem, yet are told by nearly every doctor you see that the problem is essentially “in your head”. It is only through relentless pushing and self-advocacy that the truth was revealed.

I am hoping that others who wish to learn more about this condition, can learn through the personal experiences which I share on this site.   I also hope this site can be a means of coping and healing for me, as I share my experiences with others.

In time, I hope the concept of the site will evolve to help bring greater awareness of this condition to others, and perhaps also incorporate the experiences of others as well. I also hope to be a voice for those who suffer with this condition, but cannot express themselves in this manner.

What I post is not meant in any way to be medical advice, since I am not a doctor and have no medical background.   I can only speak from my own experiences. Each person’s journey (as well as body chemistry) is uniquely their own, and any medical treatments should be prescribed by a medical doctor who is specialized in this area of medicine.

4 thoughts on “About”

  1. I did stumble across this web sight! I have been researching for the past 6 months about SFN. I , too, was diagnosed in July of 2016 after an acute attack while taking a walk one afternoon. I had experienced numbness in my feet, and my doctors said that it could be a side effect from my new medication . Well, since July, I have been in considerable pain, and am feeling that the medications are not working. (Gabapenten and nortriptyline) after reading what you have just written, I am a little frightened, because I am beginning to experience pain in different areas of my body. Skin sensitivity, electric shocks, pain in my hands and feet, legs and arms.
    I am so happy that I stumbled upon your website. It’s late, so I will be in touch again soon. I am determined to find my “idiopathic ” cause and also something to ease the pain. . Your writings might just be a life saver for me !!! Thankyou , Lainy

    1. Thank you for your reply, and I am sorry about what you have been going through.

      Out of curiosity, what medication did you take prior to the symptoms all starting? On my end, things began several weeks after I had taken an antibiotic. Though I can’t definitively prove that the antibiotic was a contributing factor in what caused this problem, the timing of it I think is very suspect.

      I also hope that you are able to find the underlying cause of your condition, and that it can be treated. At some point, I’ll do a blog entry about pain management strategies that have been helpful for me thus far.

      Wishing you a low pain (or hopefully pain free) day!

  2. I am 52 years old, I have been suffering from SFN for 2 years. I’m a psychiatrist in Brazil. And I’ve been researching a lot about it. And knowledge about this form of neuropathy is really sterile, and few colleagues even understand what it is. I took a diagnosis and thought it was the consequence of spinal surgery years ago. Well, about my evolution, in the meantime I discovered celiac, I did a sural nerve biopsy that confirmed the diagnosis of autoimmune SFN related to celiac disease. I had an immunoglobulin treatment last year with an inconstant result. I have been treating me for 6 months with the vitamin D protocol created by a medical colleague from São Paulo (here in Brazil). Vitamin D (which is actually a hormone) has potent immunomodulatory effect. I had a remarkable improvement although I have almost weekly crises where the feet mainly burn, the hands hypersensitive and when very intense I also feel in varied points of the body. What it does defines my picture as predominantly “lengh-dependent”. A high dose of vitamin D requires a rigorous protocol to avoid renal damage due to calcium excretion. Aside from this I come along with the drugs XIB4035 (which may one day become an ointment) and ARA 290 (which promises miracles in this pathology regardless of etiologies). The last drug is very advanced.I am available to exchange ideas. On Facebook there are groups of neuropathy carriers but there are many messages and a mixture of digastics involving fine, coarse, mixed fibers. May your blog help a lot of people. (I happened to find him looking for hyperbaric chamber information at SFN).

    1. Thank you for your reply and for sharing your experience. I’m sorry that you have been dealing with SFN for the past couple years. I think your background as a psychiatrist is quite interesting, being that so often SFN is misdiagnosed as “anxiety” due to lack of knowledge / awareness about the condition. Perhaps your experience can serve to make your colleagues more aware of this, which may be of great help for others.

      Being that you were able to confirm that you have an autoimmune SFN related to celiac disease, it sounds like you have made great progress in the right direction. From what I have been told about celiac, is that even a tiny amount of gluten may impair the system for 6+ months. And so I am sure that you are being extremely careful with your diet?

      Also thank you for sharing the information on Vitamin D, XIB4035, and ARA290. These are areas I will have to read up on, though not sure how pertinent it is for non-celiac related situations.

      Yes, neuropathy is quite a diverse topic. There seems to be so many varieties. And from what I have been told, some forms of neuropathies can evolve over time to include other forms, etc.

      Hopefully in time, a lot more will be known in this area – so that people will be able to more quickly and better get to the underlying causes, and have effective treatments.

      I hope on your end, that you continue to find treatments that work as well as possible for you.

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