Life

After living with my latest bout of CRPS flair up for the past 4 months, I figured the best way to combat the ever growing frustrations of limited mobility was to go back to something I have always loved, writing.

Let’s take a step back though.  My name is Jessica, Jessie for short, and my life is never dull in the medicinal sense.  In 2007, after having my foot stepped on during soccer by a girl twice my size, then banging it again at my 13th birthday party two days later, I stopped being able to walk on my right foot.  Fast forward 3 weeks and after a slew of delightful X-rays and MRIs, there was no broken bone or injury really.  Off we went to my pediatrician whose podiatrist husband had literally just read about a rare neurological disorder that could be seen in children, Reflex Sympathetic Dystrophy.  As soon as he saw my cold, purple skin and the excruciating pain with no injury, he offered a diagnosis.  And treatment that at the time was my best choice, amitriptyline, (don’t worry this plays a role later).  After a trip to visit family at the beach, I learned to walk again in the sand and waves and ditched my crutches after 2 1/2 months.

This was the first experience with RSD.  Since then I have experience minor flair ups and other rather annoying medical adventures, but nothing major.  Until September.

So let’s back up again.  What is RSD or CRPS?  Back after the Civil War an American Army Physician described an odd sensation described by those injured by bullet wounds who still had pain long after surgery was complete and they were healed.  This was coined as “causalgia”, a sort of echo after nerve damage that did not seem to communicate with the nervous system that is was healed.  Later, John Hopkins doctors noted that the unusual swelling and discoloration often left even the toughest men and solider in such a state they seemed to be a hysterical child.  An early neurologist chronicled that “it was the most terrible of tortures that a nerve wound could inflict”.  Others documented patients describing it was hot files across the skin, burning and then skin changes.  Additionally, they noted that this sensation could spread from a damaged nerve to undamaged nerves.

There has been many names over the last 150 years, but after much conversation, Chronic Regional Pain Syndrome [type 1 RSD, type 2 causalgia] was agreed upon.  Treatments have varied and had varied to rare success.

So why is any of this important?  Well CRPS is not well known or understood.  Most people see someone in chronic pain and think its only mental or psychological.  But until you have felt hot shooting pain like being burned from the inside out while being hit with sludge hammers and poked with needles for hours on end, I don’t think anyone would truly get it.  Additionally, many practitioners are hesitant to take on these cases because success is so varied.  No two patients have the same reactions or treatment success or even symptoms.  Even two patients who are identical in every way including injury could have very different responses to treatments.  Plus diagnosing it is hard.  Just like PCOS [polycystic ovarian syndrome], which has recently been noted to affect 1 in 5 women but nearly 2/3 of all cases are not diagnosed until pregnancy is attempted, was severely under diagnosed, so is CRPS.

CRPS is debilitating.  It forced me to leave a job I loved after an injury.  Now I am on track to begin a new position I couldn’t be happier about, but I can barely walk.  I will send out more updates as we learn more.

All the love.