Originally Posted by DavidHC

Hello all,

I’m new to this forum and have only been posting for about a couple of weeks. I’m very happy to have found it. I’ve already learned quite a bit and communicated with a number of helpful and knowledgeable people. I’m grateful for that.

This will be a longer post. I’m writing to tell my story and to see who else is out there, but also to start a small fiber neuropathy thread that may be helpful to those of us here with the diagnosis and to anyone coming. Any helpful information, uplifting stories, including stories of remission, etc. would be welcome.

I’m in my mid 30s. About half a year ago I came home from a late night workout and shortly after my left leg, I believe it was my left leg, began to shake, tingle and/or vibrate, actually the best explanation is that it felt like electricity was passing through it, mostly in my foot. At the same time the left side of my body began to shake. Soon thereafter, perhaps the same night or the next day it spread to my right leg. In hindsight I know that it started years earlier (maybe 2-3) with sores on my feet that would take weeks or months to go away, with unexplained heart palpitations (1.5 years earlier) and flaking skin on hands and face tightness (several months earlier). I had the heart palpitations checked out and nothing was found. My heart was healthy. Nothing showed up on regular checkups and blood work.

Anyway, I kept up my mostly unhealthy diet that was your typical North American diet that is high in bad carbs, not to mention some processed food, being inactive and in my case drinking far too much beer, including involving binge drinking almost every weekend, Fridays and Saturdays, and sometimes even Sundays. This was not a happy time in my life and to some extent eating such foods and drinking was a way of coping perhaps. I never drank that much in the years before these 4-5 years, but I was never that unhappy, stressed and hopeless.

So I kept doing what I was doing, especially since they were searching for a mechanical problem. No one told me to stop with the carbs, since a physician’s idea of a healthy diet is eating plenty of whole grains and fruit, which is completely false. I was told to cut back on the alcohol, but that this wasn’t alcohol induced. At this time they were looking for a mechanical cause, so the regular MRIs followed. A brain MRI was also done and was clean – they were searching for MS or a tumor. It was shown that I had some herniated discs, including some problems in my cervical spine, with 2-3 discs bulging and some degeneration and spinal cord compression. But the cervical MRI didn’t fit the clinical findings and there was no evidence of signal change on the MRI itself.

So I was told to do physical therapy and that has helped. But I was told to stop going to the gym. So kept eating like crap, drinking lots of beer and now not even exercising here and there. By the summer things became quite bad, my energy levels were terrible, I was fatigued, in lots of muscle and joint pain, despondent about my situation, depressed, very anxious and so on and so forth. During the days I had to rest at various points and that was discouraging too. To make things worse, my symptoms expanded from hands and feet to legs and arms to trunk and face/head. I was losing my body to whatever was going on. At this point I realized I needed to do something myself. I’m a researcher, read fast and absorb information quickly, so I started to read everything I could find, books, scholarly journals, internet sites, etc. I learned how destructive carbs, sugars, etc. are on the body, that the paleo diet was right, that supplements were useful and effective, and such things. I learned about Candida, SIBO, the GI system and its connection to the rest of the body. I read lots of medical journals at the same time, including many neurology articles.

I stopped drinking even a drop, cut out all carbs and sugars, including fruits and all other natural sugars. I began to walk after every meal, to eat only organic or local, grass fed or free range meat, lots of seafood and tons of veggies. This is where I am now, but even more precise given what I’ve learned since. I now have a ketogenic diet, and don’t even consume nuts and seeds, eggs, and other possibly aggravating foods. I have an ever expanding and more precise supplement regimen and am now back at the gym and being careful.

When I began all this, within weeks I saw great results, especially improvement in my energy and emotional levels, but also in my symptoms and my IBS symptoms. Yes, I had poor gut health, and it had been getting worse over the years, always a bad sign. I should have done something sooner but moronically did not. Now, at one point, about a month ago, I broke and ate some pizza, so carbs, gluten, dairy, processed food, an ice cream and some other things. I don’t know what I was thinking. Now, I don’t know if that was the cause, but since then I’ve had more symptoms, an expansion to new parts of my face. I’ve since been on a very strict and specific keto diet that I’ve designed myself based on my research, but even now most recently after burning my hand while taking something out of the oven I started to burn in that same place, as though I were reliving it over and over again. Now there is also burning in my right foot. To be fair, it’s not that intense, but it is an expansion of my symptoms.

A few weeks ago I was formally diagnosed with SFN, after two neurologists and three nerve conduction studies missed it. I have little respect for physicians and what I saw here didn’t help that. Then I found a wonderful neurologist, who was surprised they had not done a skin biopsy given my symptoms and the negative conduction studies.

Right now we’re looking for causes, including possibly something autoimmune, say Sjogren’s. Amyloidosis is on the table too. But we all know many cases of SFN end up being idiopathic. Just to give you some idea of my symptoms at present: tingling, numbness and electrical current type feelings all over, including place like my tongue, top of my head, chest, feet, hands; some burning recently in a few places; joint pain; fatigue (though this has significantly reduced); tremors in my hands; plenty of autonomic issues including blood circulation issues, cold right hand and feet at times, heart palpitations, dry mouth, itchy eyes, gut issues (tightness and pulling in my small intestine), so postural hypertension; and one of the worst symptoms of all is an internal so non-visible shaking from shoulder to feet on my left side – it’s always there at night when lying down and trying to go to sleep, and when it was worse in the summer my body would violently jerk when I would be most relaxed and about to fall asleep, sometimes just a leg, but sometime my whole body, and that was very worrying, but it has improved quite a lot.

So, that’s my story. Now, in addition to supplements and diet for SFN, I am also doing the same for possible Candida, SIBO, leaky gut and general GI health. My plan is to heal my gut and possibly heal my SFN, since I believe there is a connection. Of course, I can heal my gut and not see the SFN heal or whatever is causing it to go into remission, but I won’t know until I try. I am already seeing great improvement in my IBS symptoms, with about 80% improvement of symptoms, and my SFN symptoms are generally much better. But I worry about the expansion or spreading of the symptoms, and possible aspects of regression.

I suppose at this point, I’d appreciate hearing anything from others, including from others with SFN, especially those with non-length dependant, to hear what you’ve done, whether you’ve tried such a strict plan long term, and whether you’ve seen any results. I am wondering whether it’s even possible to heal SFN, whether it can be alcohol induced or GI induced, whether you’ve had gut issues, so on and so forth. I’m quite young and I had quite a number of life plans with my wife and career goals, but now I don’t know what to think, especially with the autonomic issues. My mood is much better than it used to be, so I’m okay, but dealing with this now and when I’m supposed to be at my best and most productive in life is difficult. I realize that there are many who have it worse, but part of my concern is that I don’t know where this is going and that is concerning for me so early in life when I need to work hard, be productive and shoulder the responsibility of a young family (or a major part of it). Unrealistically, I suppose I want to know that this unpredictable disease will not ruin my life, that I will be able to heal by doing all that I’m doing, and that I will find the cause or heal regardless.

Thank you in advance for any and all help and ideas. And thank you for all your contributions to this forum that has already proved so helpful!

And sorry about the length!