Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

In August 2021 I was diagnosed with Complex Regional Pain Syndrome (CRPS) – the most painful condition known to humankind. Since then my life has completely flipped upside down.

Complex Regional Pain Syndrome (CRPS), previously known as Reflex Sympathetic Dystrophy (RSD), is a very rare and extremely painful chronic medical condition affecting only 0.0005% of people. CRPS is typically caused by an injury, illness, surgical procedure, or psychological stress but is not fully understood by the medical community. CRPS, in particular, is known as the most painful condition in existence. It ranks the highest on the Mcgill Pain scale (a scale developed to measure the amount of pain someone can experience) with a 42/50 – some research even indicates that specific types of CRPS can reach up to 47/50. The pain level experienced with CRPS tops childbirth without medication, non-terminal cancer, and even amputation without medication or anesthesia.

Personally, I live at a 7/10 or 8/10 daily with my pain. I've been told countless times that I don't look like someone struggling with an 8/10 pain level, demonstrating how unfair it is that those suffering from CRPS are forced to become used to inhumanly levels of pain 24/7.

Since my diagnosis in August 2021 my condition has taken a slow but horrifying decline. What started with just some pain in my forefoot began traveling to my entire foot, then affecting my ankle, then traveling up to my knee, and eventually traveling all the way up my right leg into my hip. The slow progression has forced me to use 3 different mobility aids, it has caused me to develop severe infections, it has led to multiple hospitalizations, and has caused me to develop Functional Neurological Disorder (FND). FND has led to my knee being stuck in a straight position unable to bend and has caused my ankle to be stuck in a turned in position unable to move as well. Now I'm struggling with new symptoms, all of which are comorbidities of CRPS as none of the current treatments for CRPS have helped me. This long list includes, passing out (3-5 times a day), shaking, intense muscle spasms, dizziness, extreme nausea, and much more.

What started with a small portion of my foot has escalated to effecting my whole body in different ways – showing how horrifying and relentless this chronic illness can be. I have lost so much to this condition and refuse to continue down that path. The rarity of this condition has led to such little research and understanding within the medical community, meaning currently there is no cure, only limited treatments all of which have mediocre outcomes. Join me in funding CRPS research through RSDSA to raise money for research, awareness, and hopefully one day, a cure for CRPS so everyone suffering can finally find the long overdue feeling of relief.