David, another question I have read your CBD oil post and I am about to try that, but I would like to ask you, are you still trying Keto diet? I have been trying that in a while and I am trying to figure out if it causes any improvement or not because it is difficult to follow, besides I have lost more weight than I would like to.
And what about your muscle weakness, my muscles dont have the same resistance and start to shake when I am remain in a same position, but I can still lift some weight and run.

I hope the CBD helps you like it has helped me. As for the Keto diet, it was the best for me, but it was very difficult to stick to. Let me elaborate. It reduced many of my symptoms and I felt good on it. But it was a mixed bag. In addition to being difficult to stick too, because without carbs I often had low energy (though not always), my uric acid serum levels went up though I'm not certain of the connection, and I would shake every day. I'm not sure why the latter would happen but likely because I didn't have enough carbs in my body. I have some other theories. I would say it's worth trying to be sure. I think I want to go back and try it again for another 6-12 months and see how it goes this time. I'm now eating more carbs and even sometimes have grains, though that usually means just rice, never any glutenous, and no dairy, and my symptoms are worse. But I never shake or vibrate like when I was on the Keto diet.

As for the muscle weakness and shaking, yes it happens to me too. When I try to do strength training, say some core exercise like a plank, and I have to stay in one position with my muscles engaged, I shake and sometimes it gets violent. In the next few weeks I'm going to try to get back to the gym and to workout with weights more like I used to. I have to be careful. I think it's the stabilizer muscles that are most effected. I have pure small fiber neuropathy, but as my neurologist pointed out more and more research is showing that SFN does in fact damage muscle tissue and it's not so cut and dry with small fibers having no connection to muscle tissue. But it doesn't seem to damage large muscle tissue to be sure.

Exact same thing happens to me, some strength positions my muscles start shaking, other think that bothers me a lot is allodynia, with my jeans or the bed sheets, I am not trying keto anymore because I am not sure if it actually works, but I am paleo, I am trying prolonged fasting as well since I read a lot of benefits including inflammation markers reduction, I will let you know how that works. Will start fish oil supplements, CBD oil and b12 supplement , I am tired of going to doctors so I will focus on getting better not getting a diagnosis.
As you said SFN should affect muscles based on my symptoms, also I read that veins are controlled by the small nerves so might be the case that not enough bloods go to the muscles, just a theory after I read a lot of info,
hope you are better these days!!

Thanks for the nice words. I hope what you're doing helps you. It's an uphill struggle but there are things we can do to help ourselves and it seems like you're doing good. I'm trying different things too and want to add some fish oil. It doesn't always sit well with me but I'll try it. I hope the CBD oil is helping you too.I take it every day.

I had great benefits on the keto diet and the paleo works too, but keto has some downsides and it very tough for me. I would shake more on it, have lower energy than usual and my uric acid levels went up. The longest I was in keto was 6 months. But the weight I lost was amazing, I had less symptoms and the progression of the disease was the slowest then. I also felt pretty good other than the issues I've mentioned. Hope you're doing alright these days!

I also have severe sfn diagnosed via skin biopsy.

I get full body burning and tingling sensations from head, face, arms legs, back, chest and stomach, along with allydonia, muscle and joint pain, anxiety.

For me any thing that makes my brain have to process information makes the symptoms worse, such as reading, or watching tv, or even thinking, I pretty much have to be in a semi meditative state all the time kinda zoned out like a zombie or my symptoms will flair.

Also it seem I have another condition called (multiple chemical sensitivity) and any chemicals and most foods will make my neuropathy and other symptoms flair up. So I can't leave the house becuase of car exhaust, people in public wearing perfume, chemicals in stores ect. so I am pretty much housebound and have been for the last 4 years.

Because of my chemical sensitivities I can't take any meds, I have tried opiods, gabapentin, lyrica, antidepressants and a bunch of vitamins supplements but they just cause the pain to flair.

I did a 2 week water fast and on day 4 of the fast all of my symptoms went away
so I kept it up for another 10 days and had no symptoms for those 10 days either, I thought I had cured myself but I soon as I started eating again all the symptoms came right back.

Not sure if a longer fast would be any better or not.

Recently I cut out all carbs and sugar from my diet and went full carnivore (meat, salt and water only) and my symptoms seem to be less severe but it is so hard to stick to stick to, everybody in my house is eating pizza and drinking coke and icecream and I just have to smell it and look at it and it drives me nuts. Makes it very difficult to stick to it ya know.

I also just started LDN (Low dose Neltrexone) but have only been on it for about a week. I have heard some people with sfn who said the got some relief from it but it takes like anywhere from 6 weeks to several months to start working. Some people even said it took as long as 6 months to a year before it started working.

Hi DavidHC,

Thank you for sharing your story.

I don’t know if this has been asked but was the cause of you SFN ever found?

Can you list the tests (especially blood work) that were done and their results. I’ll really appreciate this.

Thank you.