title: "Pain. So much pain." summary: "Two separate pieces I've combined here for simplicity. They cover my experience with neurological pain I've never really had a way to fix." date: "2019-06-25" description: "A pair of posts from two separate years discussing neurological pain and the steps taken to deal with it." tags:

• "pain"
• "neurology"
• "allodynia"
• "hair"

• "fb-rants" words: 1183

Super Pain. Super Problems.

In this pair of rants from 2019 and 2020, respectively, we see me sharing about an issue I've dealt with my whole life and the impact it's had on me. I'm still working through getting it all sorted, but here we are.

This is a long one, so TL;DR: I have several severe pains I tend not to talk about, but I think talking about it is beneficial to the community as a whole.

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Time to share a couple of things with folks. This is not about Pride. This is about a different issue.

Some folks know about this, some do not, but I have several really weird things that happen from time to time and several annoying things that don't go away.

One of the intermittent struggles is a severe burning sensation in my skin when there has been no exposure to anything that should burn me. It can be as shallow as just the surface, or as deep as the bones and joints and everything. It can cover a small area or most of my body. It can feel like a couple of degrees or like fire. And it can be anything between any of the extremes here. It sucks, but I live with it. Until recently, I just figured it was something everyone went through.

One of the persistent struggles is extreme sensitivity to light touch without any change for heavier touch. This is not localised to any area, but some areas are much worse than others. For example, my shoulders, ears, and fingers all feel like being stabbed when they are touched lightly, but my legs and basically everything else feels like I'm being slapped. It still hurts, but it's not as bad as the intense spots. It's awful. And up until recently, I just figured it was something everyone went through.

Another persistent issue is that I have pretty severe sensitivity to sharp changes in light. Turning the lights on? Painful. Turning the lights off? Painful. Walking outside on a sunny day? Painful. Walking inside after any extended period on a bright sunny day? Painful. It's always been this way, and I always assumed it was that way for everyone when I was a kid, but this one I discovered wasn't ubiquitous shortly after reaching adulthood.

Another persistent struggle that I have just dealt with is extreme pain when touching or being touched by something cold. Can you imagine what it's like to feel like you have ice picks being shoved into your skin when you walk through a cool spring rain? Or how it feels like being punched in the leg when someone accidentally (or not so accidentally) touches a soda to that area? Or how even holding a drink can burn your whole hand, even though it is ice cold? I can! It sucks. Big. This is another one I figured out much earlier that it isn't something everyone deals with. But I always have. And it's one I can't really avoid.

I bring this stuff up because it's important to talk about stuff. If you don't talk about it, then no one can know that something is wrong. Even moreso, people who may or may not be going through similar things might latch on and feel like they aren't alone, especially since a lot of folks who don't go through this think I'm just faking for attention or being overdramatic.

I bring this up because these things have ALWAYS been problematic for me, and I have only just gotten to a place where I can properly discuss them with people. So if you, too, have issues you need to talk about...just know that I am happy to listen. I know how it feels to not feel like you can or even should.

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Update 11 Sep 2020

The following is from a perspective with experience. When I say that something is like [thing] or worse than [thing], I'm not being hyperbolic. I'm being sincere.

I have something wrong with me. I have no idea what it is and not enough money to find out. It's not new. I just thought it was like this for everyone because it's always been this way for me. So I just existed with it. And I continue to.

I experience extreme pain when I receive a light touch. We're talking feathers feel almost like rubbing sandpaper on my skin, and a gentle caress feels like fire. Raindrops can cause more pain than tattoos on occasion. It's bad.

When I started growing out my hair back in 2012 (the last time I got a haircut anywhere close to the current one), I did it with the full knowledge that I struggle with this pain and that other people's hair brushing my skin sometimes felt like running a steel comb over the surface. I did it knowing that it'd probably eventually be too much to bear.

But I grew out my hair because it was something I'd never let myself do and because it was a good gender feel for me. And I dealt with the pain. Some of the pain eventually dulled to just near constant aches. But that was only me getting used to dealing with it constantly. And it was fine for the most part. I had too much else going on to let myself worry about it.

Back in 2012, I told one person that I wanted to cut my hair to look kinda like Ginnifer Goodwin wore hers in Once Upon A Time (Mary Margaret, not Snow). But I was concerned that it would look far too masculine on me. I told her that it was preferable, but I never explained why.

Fast forward to autumn last year. For the first time in my life, I looked in a mirror and couldn't see even a trace of the bad gender feels. It was weird and wonderful. And it got my brain working. I might be able to let myself do this.

So I cut off my hair. Almost all of it. And it's 100% worth it.

I loved having my hair long, but it isn't worth the pain. It's especially not worth it now that some of the pain is getting worse. A few weeks ago I chopped off almost 6 inches of hair in desperation to get away from the pain. Last week I almost did it again. Monday it was so bad that I made the choice to finally call a stylist to get it fixed.

So. As I said. This [haircut] was needed. Drastically. I'll be fixing the colour soon, and then we'll go from there and see what the future holds.

Author's Note

Since these two posts, I've been able to finally get a doctor to listen to me about the issue, and I am working on getting a neurology consult scheduled (I'm bad a adulting, but I'm doing my best. Hopefully, I'll be able to find something useful, cause I'm hella tired of it. As I type this in 2024, I'm dealing with exactly the issues described above, and this is motivation to get me on top of the consult. Wish me luck.