Burning Alive

I guess I named this blog the right thing…

It seems like my CRPS is sorta under control. Normally those flares feel like hot, stabbing electricity, skin bulging, muscle tearing, broken bones. Now the sensation has changed. Before, I knew exactly what it was, where it was echoing, and so on. Couldn’t stop it, but I sure knew what it was.

Now it’s changed. Now the hot, burning feeling is coming from inside my bones. It radiates outward, spreads, aches, and eventually fades. Welcome to the bone pain of Mast Cell Activation Syndrome. The long and the short of it is this: unexplained severe bone pain with a variety of sensations. I sum it up to being where mast cells come out. See, the bone marrow is what makes your mast cells and other cells, but with over production of mast cells, they keep pumping them out like a factory instead of a custom order shop where you only make what you actually need. My theory is that my mast cells come on out and it hurts. But that’s just a theory.

These burning sensations are not like my previous hot flashes. Yes, at 24 and now 25 I get glorious hot flashes, so post-menopause ladies, I feel you on such a personal level. These burning flashes feel like hot flames racing through me at random parts of my body. Usually its short lived and almost always followed by intense pain. The confusing part about this is the pain moves. It’s like a toddler set loose in a toy store. They run from place to place to place and touch things, grab them, knock them over, basically be a normal, excited child. My mast cells are now children and I will name them as such. Essentially, one light, one cell, turns on for no reason and thus everybody else decides to act up. However, I have no energy, no strength, and virtually nothing extra to give these dysfunctioning cells to allow them to keep sending chemical signals. And thus it jumps around. Now I am no doctor, mast cell specialist, researcher, or scientist, but I did spend a hell of a lot of time learning about all of this and I like to put things into simple perspectives. For me, this makes perfect sense. Maybe it’s not the most scientific example, but it sure beats using a bunch of long, hard to spell for my spaced out brain, confusing words to explain it. Also it cracks my dad up.

All these sensations are overwhelming. It’s like I am on constant sensory overload and shut down [sleep] as a result. But hey, at least I am getting some sleep right? Missing my sense of smell and taste buds seems to be a gift right now [my extremely bland diet means nothing since it all tastes the same save a few rare instances of flavor and smells make me sick so this is probably a good thing right?] but my other senses are heightened as a result. Plus add in my body’s propensity towards pain signaling [thank you CRPS once again] and we have an over stimulated, under nourished [although my numbers are holding steady!] burning alive, patient who just wants a refreshing nap. It’s pretty frustrating. Not just for me, but for those around me. they can’t do anything besides turn on more fans [I have 2 always blowing on me] and throw ice packs onto me to try and help. It’s pretty sad as Georgia girl I can’t wait for winter…

Regardless, this is the one sensation I abhor the most. If anyone ever tells you they feel like their veins are filled with fire, their bones hurt like they are burning, or they feel like their nerves and body is burning with hot flames, just know how much energy it takes just to say that and even try to cope. Maybe hand them an ice pack…