What is CRPS?

Complex Regional Pain Syndrome (CRPS), formerly known as RSD, is an excruciatingly painful neurological disease that consumes the lives of those it affects.

It isn't hereditary, nor can it be passed from one person to another. Its cause is unknown. It can be triggered by something as minor as an insect bite.

It can affect different people in different ways. In my mom's case, her first bout with RSD, the symptoms were: bone-crushing, burning pain (like someone setting you on fire), allodynia (extreme sensitivity to touch), inability to stand, sit, or walk for any length of time, dark, coarse  hair, sensitivity to light, extreme sensitivity to temperature (the cold is painful).

There is no cure for CRPS. There are treatments for it, but every person is different. What is life-changing for one patient may be futile or even detrimental to the next. My mom had tried everything just to eleviate some of the agonizing pain: Nerve blocks, . When we found out they were running a controversial study in St. Louis to Germany and Tampa to Mexico for RSD patients who had exhausted all the other options we barely blinked before rushing off to Tampa, FL to participate.

For 3 years Mom was in so much pain that she wanted to die. She had lost her entire life. She couldn't drive, eat, walk, sit, be touched (even by something as light as a sheet). She was on so many pain killers: 100mg fentynol patches every 3 days, cymbalta, lyrica, oxycodone, oxycotton, and ambien. She still was in debilitating pain. She lived in a hot tub or in bed with heating pads all over her body.