My life has been consumed with a monster for 7 of the last 10 years. With this image I can comfortably say, I’m in remission from the most painful medical condition known to science. I’m lucky, I’m blessed, & I’m terrified of it coming back. But I’m surviving. The reason this image is so significant is this condition attacks you from the sympathetic nervous system. This system controls vital systems in your body, like hot/cold sensation, hair and nail growth, pain with injury, sweating.
My nails have been so horrifying to look at I would go 6-9 months between times I would look at my feet. I was verbally chastised for wearing open toed shoes when I had “fungus.” But the fact is, it wasn’t fungus. It was my nervous system responding to a invalid threat causing my nails to be thick, and hard to cut.
My finger nails have normalized as well, back to their brittle stage they were before this. I’ll miss them being strong. But my toenails take longer to grow, which is why this image is so significant. In January 2015 I started a treatment. One that has turned my life completely around.
By March I was able to sleep more than 30% of the night. By May it was up to 50%. My pain is gone. My symptoms are almost gone. I have fatigue, I fight with occasional spells of pain that make me fear it is back, but so far nothing has “stuck.” But all and all my health is on its upswing for the first time since 2009, my first suspected remission which started to show signs like I am now but only lasted about 9 months before I reinjured myself.
My nails are ¾ normal and it sounds crazy, but I’m crying because of that. Not because I’m happy, but because my pain family are still suffering. Still being chastised by ignorant asses because they LOOK healthy, but are suffering. I have been through a lot in life. But this, I can’t even wish on my worst enemy. I could not condemn the most vile person enough to want them to feel this. And yet millions of people are fighting this, some with no family support, many with few family friends. This monster brings me to TEARS knowing others still are still fighting.
Please, though I know most don’t even know I exist, or follow this, but if by chance you find this. Make a point to ASK your doctor if s/he knows about complex regional pain syndrome the next time you’re in. Read a few articles on it. Watch a few of the videos made. Doctors are STILL learning about this. Patients are still being misdiagnosed. Being told it’s all in their head. Some doctors are still claiming is not real. Please for the community member you don’t know, advocate for them. You’re a chance to help get earlier diagnoses, a chance for remission for another.
I was LUCKY! But I want to increase the odds for others. This used to be a death sentence. We’re changing the landscape by educating others, healthies as we call them, but it only works if you take a little time to learn the signs. … Your actions could change the life of another. Please consider it.
Thank you from the bottom of my heart.