u/frootily

Hey everyone!

I’m 27F from the NA (EST) region, looking to meet some new people to play Fortnite with!

I currently have a small group of friends who regularly play together and hang out in Discord, but we’re hoping to branch out.

We’re a pretty laid-back bunch who enjoy everything from deep, philosophical conversations about life and the universe to the most ridiculous, mindless, surface-level banter imaginable.

It’s all about balance. 😉

A few things:
- 18+ only, please!
- Zero build only.
- Must be comfortable using Discord for voice chat. (We usually use discord to chat while playing.)
- All personalities, backgrounds, and skill levels are welcome! Preferably someone open minding, loving, and non-judgmental. 🌈
- We’re more interested in good company, genuine connections, and having fun than taking the game too seriously. (Although I’d be lying if I said I wasn’t a tad sweaty.)
- Open to trading sprites; I have almost all of them!

If you’re interested, send me a DM. Have the best day ever.

I want to preface this post by saying I’m not looking for medical advice. I’m just at my wits end here and want to see if others have had similar experiences to me.

I’m currently waiting to see neurology and small fiber neuropathy is one of the possibilities that has come up with my PCP. I wanted to ask whether anyone here has experienced anything similar to me, because I feel like my symptoms are a little unusual compared with the classic burning-feet description I keep reading.

For about 5 years I’ve had episodes where large parts of my body feel numb/tingly/crawly. It can affect my legs, feet, arms, hands, back, torso, scalp, face, lips, tongue and even the inside of my mouth. It isn’t complete numbness, more like paresthesia or like mild loss of sensation. I can still feel when something touches me and know where I’m being touched, but the sensation feels abnormal. Things like blankets touching my skin, rubbing, or massage can actually make the crawling/tingling feeling more noticeable.

I also don’t really have burning nerve pain, which is one reason I’ve questioned whether SFN fits.

For years the symptoms have been extremely inconsistent. They can move around, change intensity, and sometimes disappear completely. Usually they would come and go, but I’m currently having a flare where the sensation has been widespread and persistent for several days, including my lips/tongue/mouth. This is the first time it’s been persistent for days.

Lately I’ve also been dealing with things that seem more autonomic: feeling dizzy when standing, occasionally seeing stars/dimming when I stand up, getting clammy or sweaty while feeling cold, very cold toes, heat intolerance, and feeling significantly worse after warm showers.

I’ve had a normal neurological exam in the past and an older normal brain MRI. My experience with the first neurologist was less than savory. He basically just patted me on the back, said he thinks I might have an autoimmune condition, and said he was going to refer me to rheumatology. No work up. No testing. I haven’t had a skin biopsy, QSART/autonomic testing or EMG yet. My PCP just put in an urgent neurology referral because this flare is lasting much longer than usual and I need a second opinion.

I’m mainly wondering:
Does anyone with confirmed SFN experience widespread/non-length-dependent symptoms like this, especially involving the face, lips or inside of the mouth? Do your symptoms ever completely disappear and then flare again? Does heat make your sensory symptoms or heart rate/dizziness noticeably worse? I’m not looking for anyone to diagnose me. I’m mostly hoping to hear whether this sounds familiar to people who actually live with SFN. The uncertainty has been really difficult, especially when my PCP just threw out things like MS, SFN, FND. I’m super overwhelmed and feel very lost. :(