Having written such a long post, I'd also add a few random things I forgot in case they are helpful:

--Among the many tests that were run (including multiple & varied Lyme disease tests, all negative, vitamin deficiencies, etc) I was also given an MRI to rule out Multiple Sclerosis, which was negative

--I also tried hypnotism several times. Didn't seem to help.

--Sometimes I wonder if my symptoms have really diminished as much as I think, or if I've just gotten used to them? I guess either way, its improvement (?). When I stop to think about my pain levels during "light" days of 1s and 2s level stings, I wonder if they used to feel like 3s and 4s...?

--Though I fully believe this to be a physical condition caused by trauma (in my case, an unnamed viral flu-like infection), I also believe with 99% certainty that there's a psychological aspect as well. For example, sometimes I can go for 3 or 4 days with essentially no stinging/burning and think to myself, "I've been feeling pretty good lately!" then 30 seconds to 2 minutes later... ZAP! Like an arrow fired from the karmic cosmos into my shin, or bicep, or thumb or... well, you guessed it... sometimes even THERE! I don't know... I try to keep a sense of humor about it, but man is it _hard_.

Like another poster said... if I could know that it will never get any worse from here, but also not any better, it's a deal I would sign immediately. The biggest frustration is trying to remain graceful while in so much pain, never knowing how long it will last or how intense it will be.

Hello friends!

I was hoping not to be back here

Unfortunately I am, and it's because the symptoms are back, albeit not as crazy as the first time. YET.

It's all kicked off again post Covid (the only registered time I've ever had it although the first time this all started could have been Covid but there wasn't tests out then).

The prickling, crazy twitching in specific parts of the body, itching, etc.

With Covid, I got what I had the first time. Crazy temperature, night sweats, body ache, cough, etc. and then a few days these symptoms kicked off again.

I am guessing it's some sort of auto immune response which is triggering this and I really hope it peters out because I don't want another two years of this crap again!!

Before Covid, I had pretty much got back to normal and it wasn't part of my life anymore.

I just really hope everytime I get Covid and/or flu, this doesn't always happen but sadly I think it will. Just worried that each time it happens the more my nerves get shredded (literally) and I become susceptible to this happening again.

@forrest1974 - sounds like we're in the same boat!

I also have nld sfn. My symptoms started seven years ago and after 2 years I had them better controlled but not by any means perfect and I had Covid at the end of June and I am burning from head to toe. I also have some difficulty with my hands. How are you? I started on cellcept. Initially my ANA was normal but has become high over the years. I now have an autoimmune disease that may be causing it. I was idiopathic for a while. It does seem as though Covid triggered it again.

Sadly I've read so many stories of those having been dx'd with covid and all the jabs/boosters and have so many health issues since all this. I've never had the covid nor done any shots and work to keep my own immune system strong with all that is out there to help us. We can do so much to heal ourselves...

Welcome Carolina1