Hi!

I have suspected full-body non-lenght dependent SFN (have not had a confirmed biopsi) and had an acute onset roughly 8 months ago. It was all going down hill (loss of motor function in hands, diminished strenght in legs/arms, burning pain, numbness, tingling/vibrations/twitching all over) up until somewhere in August this year after I change my diet to a gluten-free, vegan diet with no caffeine, alcohol and refined products.

Roughly two months after this I started noticing positive changes with diminsed pain and partially regained motor function. Since then I have been slowly getting better and better but the last week I've gone into some kind of relapse.
The pain is acutally not worse but I am noticing numbness spread out in spots over my body - primarily the right side and I have also lost some motor function again.
The only thing I have changed is since I got better I started drinking coffee again and also having a few drinks during the weekend.

Does anyone have similiar reactions to alcohol and caffeine? I just don't get it. I was clearly getting better and now it seems it's all going down again and it's making me really scared.

Well, I'm no expert, and not a medical professional, but I really don't think that SFN is controlled by diet. You may 'feel better' over all with a gluten free diet, no alcohol in your diet, but damage to your SFN isn't related directly to diet. Some of the pain of neuropathy related to either diabetes or Celiac Disease can be eased by changes in diet, however.

A dietary intervention for chronic diabetic neuropathy pain: a randomized controlled pilot study

Small-fiber neuropathy/neuronopathy associated with celiac disease: skin biopsy findings. - PubMed - NCBI

I take 3600 mg of Gabapentin, daily, to manage the pain of my SFN.

It is suspected that both my profound PN and my SFN are the result of attacks by my Disordered Immune System, probably using Cytokines. I have other organ/system damage, as well: moisture system (eyes, mouth), lungs, ears, bladder.

Do you know what causes your SFN?

Regards, ElaineD

try eliminating one of those two things at a time and see if you feel any better. i would start with the alcohol, since that is the more likely to trigger a response.

The vegan diet doesn't contain b12 unless you are supplementing with this, and b12 supports the nervous system. I think the paleo diet is more intelligent for sick people, although I don't like eating meat generally. I actually think herbs can help this kind of thing, for instance, ashwagandha has a reputation as a restorative medicine for the nervous system.

I had an acute onset, similar to yours (but not quite as bad) about 3+ years ago. Things stabilized, then got somewhat better over a few months, but I do continue to have some relapses now and then and things get worse for a while. Just make sure you go back to the things you think may have helped you initially, and hopefully things will get better again.

Unfortunately, this is a bit of an unpredictable disease that we are battling. I hope you get back on the road to improvement soon.

I had a really bad week last week...the worst in a very long while...and I'm assuming it was stress-related. I started a new job, and even though it's a very good thing, it had me wired.

At one point, my resting heart rate was stupidly high and I was having palpitations, so I took 10mg of propanolol, a beta blocker Don't you know my neuropathy symptoms waned right along with the cardiac symptoms? I know it suppresses norepinephrine which hits your nervous system, but I was pleasantly surprised at how much it helped. Unfortunately it also dropped my distolic blood pressure to 49-55.

I found this which was an interesting read.

Propanolol (Inderal) in Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS) - Health Rising

I do not know the cause. According to my neuro there is no support for anything autoimmune and in terms of deficiences they have tested for the B12 and other stuff. It did come on hard after a period over immense stress and a long flu-like infection which lasted for a month or so while I was having panic attacks. Could it be that my own body is attacking me (say, chronic inflammation) and it still does not show up on an autoimmune test? I am quite new to this and my doctors does not seems to know at all about neuropathy other then in the case of where it is induced by diabetes.

Sorry to hear about your situation. Are you managing well with the gaba for pain relieve? And have you found anything that helps to stop decline/recover?

Thank you for sharing this, Ragtop. This is my first relapse since I started getting better and it has got me really scared. I though I had a chance to recover adn then this happened. Still, I am not giving up.

As far as I understand, you are saying that you have relapses but that you also recover somewhat? I am still trying to figure out what one can expect to regain if recovery happens.
Indeed it is unpredictable. Do you know what caused your onset?