During this adventure I have had basically every single medicine, therapy, and attempted procedure out there. As a result, I have some serious insight into what actually works to treat MY case of CRPS.

Let’s start with what DOESN’T work…opioids, drugs, pain medicine, ignorance, and staying still. All of these are things I have experienced or done or been told to do. Let’s start with the big bad word, Opioids. These are great short-term options for broken bones, major surgery, dental work, big bad injuries, and all around pain that WILL go away. Now here’s the kicker, most doctors prescribe these without even thinking about the potential repercussions. let’s say you break your arm and they give you Hydrocodone, an extremely common and relatively low dose opioid, to help with the initial pain. Then let’s say the pain doesn’t stop, your arm is still broken, healing but broken, and things are regenerating and it can hurt. SO you go back to the doctor, tell them this and then they hand you another script for more pain pills or a higher dose. After that, they send you off to a pain doctor, who might try muscle relaxers [basically an obnoxious group of medicines that are SHORT term help] and before you know it your arm may be healed but there is this small part inside of you craving the relief of no pain AND the sleep aid all those pills gave you. Now you can’t sleep. So another doctor writes you a sleeping medicine prescription. And now here we are. So lets recap- a simple, single injury can lead down a major path of unknown, unintentional addiction to medications. Now you are reliant upon all these medications to survive. I’m not saying this is always what happens or that this happening means someone is weak willed or not strong, it’s just the way the system is set up. Half the time regular doctors wont prescribe an opioid because of the risk but think that a muscle relaxer is somehow magically “less” addictive. The honest truth? It’s not.

So now we’ve gone through opioids into muscle relaxers, which really can help, but I always say “how long and how do I get off of them”. This comes from a personal position where I truly do NOT like the feeling of not being able to control myself or that nagging bodily “need” for a medicine. I would rather just go through it than cave and take the medicine. But everyone reaches a breaking point. I did in December. At that point I was unable to walk, move, or even do the most basic things without help, so we turned to a muscle relaxer and suddenly I was up from 2 a day to 6 or more,1 every 3-4 hours and the pain would come back. Between that and these lovely drugs they call “anti-convulsants with nerve pain benefits” [we will get to those later] I was a drugged out, space cadet with no real recognition of what was going on. Throw in the fact that the medicine stopped working [tolerance builds FAST people, FAST] so then we are on to the next medicine, and then the next, each one stronger, with worse side effects, and not really helping. One made me feel like I was on 6 shots of espresso, another gave me night terrors, anaphylaxis with another, and at this point I was exhausted.

So we went non-medical, a sympathetic nerve block [fun fact, these are GREAT for extremity injuries, however mine is a TRUNK injury, AKA middle of my body and including my abdomen etc] which put me down and out of an entire week unable to move. That’s where those muscle relaxers came in and thus the cycle began. By this point I had been on that drug class I mentioned early for a while “nerve pain blockers” lyrica [AKA groundhog day and 50 first dates for me personally where everything I was seeing, learning, doing, was being misfiled and never going even into short term memory, after coming off of it, I can now say, 3 months later, those classes I was taking, all that intel is randomly coming back to me] and eventually Gabapentin. Gaba can be good for some people but what is VERY important to note about it is that even in small doses it can inhibit neuroplasticity, AKA brain nerve growth, which is where the continued memory issues occurred. In my case I got an extremely rare side effect of full body tremor/seizure like movements that no one could or would explain [thank you pharmacist Allison for figuring it out for me]. The other thing often forgotten is basically every medicine has a warning label about dizziness, so I had zero balance and risked falling. My detox off Gaba was less than pleasant, rather I caution anyone using it to make sure and note that detoxing off of it can be as dangerous as detoxing off of a drug addiction. Me? I got the nausea, vomiting, pain, exhaustion, shakes, and depression all wound up into 7 days of hell. Lucky me though, I was only on a lower dose, safely titrated off, and was on it for only 2 months. But here’s what is so important, I was AFRAID to stop taking it because I was convinced the pain would be worse without it. Not true at all, but knowing it was prescribed for my “nerve pain” made me assume that.

Alright so let’s get to the GOOD part. What works? Well every single case of CRPS is unique, as Steve [a former DR and specialist for CRPS] quotes, RSD means “really stupid disease/diagnosis” since it is a catch all like neuropothies or fibromialgia. But the KEY factor is movement, teaching the body and the affected part what a “good” movement is, whats normal movement. But CRPS fights you hard. Every single symptom is basically forcing you back into bed or onto a heating pad or to take those pills. Aqua Therapy was my first step. My first real step and real success. Jackie, my PT therapist, is amazing. She recognized where I was an never pushed me too far, she let me lead the way. And I was determined as hell when I met her to walk again and stop barely making it from one chair to another. Water really takes all the weight off the joints and allows the muscles to work gently. Plus I slather Vaseline and lotion all over my sensitive skin. MAGNESIUM in lipoderm. Magnesium is amazing and essential or bone strength [CRPS starts to reduce their density] but orally can create a disaster in your stomach and topically some people are too sensitive [ME ME ME], but luckily, my women’s health DR had a recipe with a compounding pharmacy who made it for me AND suppositories of Valium. This one is actually a good idea because it allows on those HORRIFIC pain days, for my body to absorb the medicine internally right where it is actually needed.

But what else works? Well for me, my B12 levels were dangerously low, and CRPS = no energy, so the b12 shots and sublingual have helped give me energy and allow my physical state to match my mental state and get up and go. Melatonin for sleep [I also utilize other things but maybe I’ll discuss that another time] Setting required appointments also helps, because it FORCES you to go, you can’t back out of an appointment when you commit yourself to it. NUTRITION. I am really bad at that one, let’s get real. I don’t always have the energy to cook something healthy, or the stomach to eat the right foods, but I do try. Getting those fresh, good quality nutrients into your body helps you fight the battle. Reflexology. For me Tia was my God send, because reflexology [which like 99% of Drs have never heard of] works the ears, hands, and feet, it can stimulate and relax those affected parts without direct contact which causes pain. She sent me on to Lymphatic massage with one of THE BEST and most well trained therapists out there. It’s extremely gentle, but I felt so much better 48 hours later.

POSITIVITY. Ya that one is hard. I have broken down more times than I can count. You can’t see what I am dealing with on the outside, only slight redness on my skin, some thinning skin, and now a cane to help me balance. But before the cane, people would knock into me all day and even a brush against a wall on my injured side would set off a nightmare chain reaction. Often times I’ve wished for broken bones, cancer, even to just give up and die because I am so tired of the way the world treats chronic pain. I’m not a pill seeking junkies nor am I an attention seeking individual. All I want is answers and effective cures. So yes, sometimes that positivity fades and the frustrations mounted come back to bite me and I let that mental woe overwhelm me. It happens more than I want to admit. CRPS is as much a physical disease and battle as it is a mental one. What people don’t see is imagine the spoon theory for depression only remove half of the spoons. CRPS takes away simple joys, freedom, driving, walking, cooking, being alone, going to the gym, playing with your kids, everything. It rips it all away at any given moment and you are left with only your thoughts about it. So how do we fight it? For me, sometimes I don’t, sometimes I just recognize that there are limitations and I will just need to learn patience and endurance while I keep recovering. And sometimes I make myself a small drink. Not always the best choice but honestly I’ve stayed away from alcohol due to all the medicine anyway. And then sometimes I punch that feeling in the face. No really, I punch that thought, that image, away, just like I did that stupid Jellyfish. And then I remind myself that the minute I give in, give up, and just cave, I will be that statistic, I will have let all my hard work over the last decade go to waste. I won’t have a chance to change the world or even just one persons life. I won’t attain my goals and I won’t achieve my destiny, whatever it is at this point, I’m a little lost just like that song Lost Boy by Ruth B [it’ll make you cry]. But I guess part of this journey for me is finding my tribe, finding myself, and discovering strength I didn’t know I could gain.

Stay Strong my friends and never give up, no matter what comes your way, there is always a way over, around, under, or through that boulder in your path.

I think at this point, anyone who doesn’t personally know me is clueless about the epic 5 month adventure I’ve been on.

Let’s back track. I was just officially promoted to GM of my resturant and decided to have a girls weekended with my mom in hilton head the weekend after labor day. So after a hellish 70 something hours packed into 6 days straight of work, and a very detailed list of instructions for my team, off we went, car jam packed with beach chairs, umbrellas, towels, and enough booze to knock a sailors hat off [you know I needed my craft beer stash]. I had just come off a 4 month Keto diet with zero drinking and felt my best ever. New birth control for PCOS, on my way down off my other mental health medication, and a signed contract for a new apartment to move into the day I got back.

Then Hurricane Florence began its decent on the east coast, bringing ahead of it a flurry of dark murky waters, and rain threats, none of which would down my tiny bit of end of summer sunshine. The skies cleared, the sun shone, and off we went for a very breezy beach day. Add into that I was just starting off my online classes.

“Look a fish jumped behind you” She said to me and I turned around to face the oncoming water away from her. Then it struck. I felt a sudden burning sensations like hot electricity and razors all at once around left hip. Instinctively I punched wth my right arm and pulled my teres minor [small little muscle but it hurts] and started yelling. Frst my arm hurt worse but the moment I started to move out of the water I knew I had been stung. Little kids had baby stings all day, but this one was huge. My mom came running out of the water with me and we headed straight to the lifeguard stand, who of course wasn’t there. So down the beach we hustled, me cursing all the way [small children were present but let me tell you this was horrible] until we got half a mile to the next stand and I yelled I was stung and needed vinegar. AS I started using the spray bottle to squeeze onto the giant swollen welt that was engulfing my left side and bikini bottom, I had clearly interrupted this lifeguards random conversation with an old man and he simply told me, “stop using vinegar it wont help, go put sand and water on it, it looks pretty bad.” QUICK NOTE. any well trained beach lifeguard should know the signs of a dangerous sting.Normal jellies have rd marks and cool water and sand can soothe and THEY DO NOT SWELL OUT LIKE AN EXTRA LIMB. Mine was so swollen and red you could barely see the bathing suit bottom. ALSO my chest was flushing red. This is important because with Man O War stings, you need to evacuate the water, but vinegar and VERY hot water on it to kill the stingers and send for an ambulance. ALWAYS. but apparently not. So I put sand and water and screamed it hurt so bad and we hobbled back down the beach to our chairs and exit towards the apartment where I ran FRESH COLD WATER ON IT [do not do this, this makes it worse, it activates stinging cells] and then urine. Luckily my mom had liquid benadryl for sleep, so i popped some in, chewed them up and chugged water. This probably avoid the anaphylactic reaction that could have occurred.

According to the local pharmacist, “as long as you don’t have trouble breathing you’re fine”. This is not true. Up to 2 weeks post sting you can have a throat closing reaction and should be closely monitored. So how did I finish my day with some of the worst pain in my life screaming down my left side? Naturally we put me in a T shirt, I insisted we went back to beach [where another lifeguard saw sting but also didn’t recommend ER, which we did debate but having been trapped in the waiting room for 13 hours a few years prior, I am not too keen on them], and proceeded to drink a crowler of beer.

So there is what actually happened. Now the events that follow, and will eventually come to light, relate more to the side effects of nerve damage and CRPS. But if nothing else, let me say for the record, ALWAYS GO TO THE ER WHEN IN DOUBT.

Below are a few PHOTOS of what happened that I managed to save. Be aware, it’s not pretty.

6 hours in after benadryl

48 hours later

12 hours in

Sometimes it is really hard to think about they past. The time before everything went down hill. Before the first injury, before the first panic attack, before any of it. I don’t think anyone can remember the first time they had a cold as a child. But I sure can remember pneumonia in 2nd grade [mainly because I had a lavender/pink sweat shirt sweat pants combo I wore when we swung by my school in for homework, and of course my best friend loaning me her VHS of Sleeping Beauty which I watched on repeat all night while my elderly neighbor went to the 24 hour Kroger for more medicine at 3 am].
Side note- Cath I still have that VHS…I never gave it back.
I sure as hell remember falling off my playhouse backwards a few times, getting hit in the head in soccer games by the ball, and naturally, all my many clumsy trips and falls.

But what I have learned over the last few months is that going forward, that past is gone. I can no longer run around carefree without shoes for fear of stepping on something sharp and falling back to square one with CRPS. I’m not sure I’ll ever get the chance to ride a horse again, something I can say with true honesty I missed doing after childhood. I don’t think I will ever go skydiving, or hiking solo, or rock climbing, or deep sea diving, or ever get that Motorcycle I really wanted (Kawasaki 250R 2013 edition). I will always have to be aware when I travel, go somewhere new, or do something different. I will always have to navigate differently in the future.

In the past, I would pick up heavy things I probably shouldn’t have, carried a purse 3x my weight filled with useless crap and unused lip glosses (the 2006-2008 trend), and moved produce boxes around like I was in the gym. I would go to the gym and push myself, jump in cold water pools half naked with friends at 2am, and have crazy, fun, drunk nights. But now that’s changed. And I’m not saying I didn’t feel this way before. Hell, I’ve always been the mother hen. Constantly aware when I needed to stop after that 2nd or 4th drink because I knew I needed to sober up to walk back to my dorm with my friends and take all my meds. I could never stay out all night and crash in random places like my friends did, because I had to stay on my routine. For the longest time I was fear driven. Driven nearly insane by the constant caution my life had to be under. “wash your hands every time you touch something” “carry germx” “ask whats in the food before you eat it” “make sure you have a balanced diet” “watch what you eat” “watch your surroundings” “be careful”.

Shockingly, not all of those came from my parents, most came from me. From my need to control and protect myself in what little ways could because so much was out of my control. I could study all night or for 15 minutes and still make the same grade if my brain decided to be in a fog, or my ADD meds kicked in at the wrong time and I ended up bleaching the inside of a fridge (true story- my roommate found me on the porch detail scrubbing the drawers mid November, I know had a mid term the next day and I actually hate cleaning). I could wear a mask to every class, clean my hands 100 times, and still go down with a head cold for 3 weeks and forever be playing catch up. I guess that’s really how I’ve always felt deep down; like I’m playing catch up to everyone else. No I wasn’t the shortest, or slowest, or smartest, or dumbest kid in anything, but I was never the best. I was just OK at things. And then when something good finally started, down I would go with my body crippling me. Don’t believe me? Let me just list this out for ya.

Sometime between being born and age 6 – dehydration that required an ER trip and one VERY expensive cup of apple juice

6-11 at least one case on pneumonia, 15 strep throats, a dozen head colds, and a virus that left me unable to walk for 3 days but took 7 days to fully recover (thank you dad for finding me scooting my way across the carpet floor to the bathroom from my bedroom)
11 cyst removal, I pretended aliens landed on my face and we had to remove them for research, and of course the migraines started.
12 RSD makes its first arrival after a soccer game and a birthday party, my birthday party to be exact, where I turned 13. During this same adventure marks the first of many experiences of anxiety, panic attacks, separation anxiety, grief of loosing two grandparents very close together, and friends leaving me behind. I did eventually recover from RSD thanks to my pediatrician whose podiatrist husband had just learned about a rare disorder in children and adults and the key marker was a purple/blue cold limb. And they treated me, I learned how to walk again with a lot of pushing from my mom, and a beautiful sandy beach where crutches are a no go.
13-14- here come the heavy hitters-First got surgery on my 14th B-day (whoo…) for a cycst and appendix removal, followed quickly by a summer of depression that lea to bad medicine advice and thus my first mental breakdown, three weeks into high school, and naturally it occured immediately after a “back to school everyone get sick” week long adventure. This led to 3 months of homeschooling and suddenly, I was out of the loop with my friends. I wasn’t “cool” or in the know with them. I was always missing because I was sick, and who really wants to tell the same story twice just because one person who wasn’t there missed it?
From here on it’s the same old story for the next 4 years, boyfriends, break ups, friends, friend break ups, illness, shitty doctors, and overall just a struggle to get by while in a hazy fog of medication. [Yes, High School does suck]
Now here is a solid positive- We found a therapist who understood me and the way I looked at the world. Dr. Cressie. A woman my mother found after years of searching and fighting for me to get better help. Of course my therapy group consisted of girl 3 years older than me, hooked on drugs and pot and sex but suddenly I understood where I stood in the world. I couldn’t be sheltered and live in fear forever. So I didn’t. And Dr. Cressie showed me how. [may she rest in peace]
So now we’ve almost hit 18, and Dr. T rolls into the picture. A woman I admire more than almost anyone else. She listened and looked at me, not my symptoms, me as a person, as a human, as a young adult, as a person in pain. And she helped.

So now we can skip through college, basically exactly the same adventure only I’m rolling solo with my nerdy crew [yes we were total nerds and I loved it while it briefly lasted] I had some bad relationships, some good ones, some good roommates, some bad ones and some very, very strange relationships, but I was still cautious, and controlling. Controlling to the point of developing an eating disorder, isolating myself, and just overall not learning how to cope. Between a fall that ruptured my knees bursa sacks, to sciatica, to a long list of very very bad relationship choices, I became a mess. Ended up sick again, in an ER for 13 hours of hell [just ask my mom, she managed to pack her bags, pack the car, drive to KY from GA, 7 hours before they saw me] which left out of school fighting to get it together. Then I had to fight to get back into school, finish my degree, and learn to cope with what was real depression and anxiety from an actual situation and what was just a chemical misfiring in my brain that was presenting its self like that.

So why am I unloading all of this on to you dear reader? This has nothing to do with my current injury or situation. And it’s not to invoke some kind of sympathy or make me out to a hero, but all of these life experiences have built me into who I am. Had I not learned at a young age how much bullying hurt, maybe I wouldn’t have had the strength to stand up for someone else. Maybe if I hadn’t had migraines, then I wouldn’t have known how to help a friend in desperate need the night before her practicum. What if hadn’t had learned about bad relationships and what it feels like to be completely out of your mind, then I wouldn’t have known how to stay with someone who was sick all night from drinking too much and recruited another friend to stand guard with me to protect her. What if I hadn’t been diagnosed Bipolar and Depressed and had just given up instead of fighting to change how it’s viewed. Maybe if I hadn’t been saddled with all these experiences, the pain, the loss, the frustration, the anger, the shame, the annoyance, and the struggles, maybe, just maybe, I would have been normal.

But who wants to be normal anymore. I would never trade a single one of those horrible, painful, sad, tear inducing moments for anything else in the world. Why? Why would I say that? Because I am a fighter. Because I know and understand exactly what it feels like to have nothing in your control and feel like the world is cursing you. Because I have been there by peoples sides when they’ve come in broken, hurting, lost, and needing something. And I can only do that because of what I have been through. What my family has been through. What those loyal to me have been through. When I hear someone is broken down and frustrated by the fact that no one seems to be able to give them answers, here I am, same boat, same story, and I am not giving up. The saddest part of this disease, CRPS, is it’s called the Suicide Disease. Because every single day, people give up. They let it overwhelm their minds, bodies, and souls, and give in. And yes I can say all these strong, pretty words and still be hurting and bleeding on the inside, but I have chosen not to. Not to allow this to determine my life, my path. So yes, I will have to let go of the past, I will have to accept I cannot control muscle spasms, and pain, and the emotional roller coaster it puts me through daily; but what I can control is me. Is who I am inside each and every single day. What I do when I walk [or hobble for now] out that door each day.

The fact is, I’m not fight cancer here. I’m fighting something just a chronic but you can’t see it, and with equally limited treatment options. But what those fighting cancer and I have in common, is the strength to keep going. To stay strong amid everything out of our control. And that it can get better. And one day it will be better. Maybe not everyday, maybe not every hour or minute. But if we each, all of us out there fighting something, from cancer and CRPS, to depression and anxiety, to abuse and heartbreak, and even fighting through grief, can do one thing, it’s stay strong. Stay strong for each other. Stay strong for those around us who see the suffering and have trouble seeing your future, and remind them that you are a Wojownik, a warrior. A fighter. A dreamer. And the future.

Stay strong my friends.

It’s going on 5 months without a full nights sleep and I have become exhausted from my nightly trial of choosing to either get up and pee and know I will be up for another hour and half to pee again, take my pill, and pray I can go back to sleep and do it again 2 hours later, or lay awake in pain, praying for another 30 minutes of rest, knowing the next time I wake it will be even worse.

I dread night now. I know the symptoms are bad enough during the day, but at night they hit like a Tonka truck vs. hot wheels in a sandbox. I dread laying down or moving the wrong way and hurting again, setting off a chain reaction that makes me want to scream and punch a pillow. I dread finally getting into a position where nothing hurts and having to pee for the 14th time or my stomach turning into acid and burning my throat and I’m forced to rearrange

I hate waking up every 2-3 hours and hurting, burning, aching, knowing the moment I glance at the clock that if I have reached 3 hours since i last looked at the clock I’ve made an accomplishment. I hate the night spasms that set my muscles on fire and the tremors that come when I am finally asleep. I hate that all the strange and terrible side effects come with insomnia and by 10am I feel like I’ve worked a double, ran a marathon, and given a gallon of blood all at once. I hate puking my guts up randomly, nausea running a perfectly good meal, and ending up on a bathroom floor I have to be hauled up from.

The only blessing from before was that my memory was so non-existent that I forgot any dream or nightmares almost instantaneously and didn’t remember when I woke up all night, just that i was tired and had made an insane number of “awake” tally’s. By month 3, my memory started to inch back, and by month 4 it was back in action; if only to trap in endless night terror loops or remind me that I woke up 45 minutes ago.

After 4.5 months of little to no sleep, dizziness is a common factor. Bright lights always hurt. Pillows are no longer soft and blankets don’t keep you warm. Black spots and odd thoughts are common ground and well traveled. If fitness points were counted every-time I changed positions at night, I would have top marks. At this point I have reached delirium. Now we sit and wait until sleep claims me for a few brief hours, then we begin again.

Before, I was strong. Before, I was healthy. Before, I was happy, active, and lively. Before this injury I had a life.

Before the pain, the burning, the aches, the sleepless nights, the frustration, and the tears, I was successful. I had finally found a good place. I was in classes again heading towards a goal. I was in a job I love. I was surrounded by people.

Two months before, I was promoted. I was proud of my success. I was thrilled by new opportunities. I was sleeping at night. I was driven by the new opportunities that flew around me.

One month before, I was finishing a health diet. I was thrilled to go and buy ingredients for new recipes and bake until my heart was content.

One week before, I was packing for the beach, planning a much earned vacation and a tan.

One day before, I was shopping for an outfit that made me feel special.

One hour before, I was strolling the beach, sipping a beer, and enjoying a gorgeous day.

One minute before, I turned because I heard a splash.

and Now I am here.

Have you met the Ocean Sunfish? I just did. It’s a gigantic, hilarious, stupidly created, fish. And I cannot stop giggling at it, which is a first for over 4 months. This giant, waste of space, floats around because it cannot use its tiny fin to propel its self. Scientists really don’t understand how or why this thing survives. In reality it is the worlds largest bony fish, a flat fish, and also called the Mola Mola. It cannot defend its self and despite being a monstrous fish, it is not a predator. Their teeth are fused. In reality the only thing that can eat it [even though it is bony, nutritionally useless, and rather oddly shaped] are sea lions [who prefer to bite and play with them], sharks [who could really eat basically anything else, but I assume lazy or dumb sharks can catch these since they can’t run away], and killer whales [I mean killer is in their name]. If they float to the top of the ocean, they create a nice mini island for birds to land on. Otherwise they kinda dive themselves way down to eat.

So how do they perpetuate if they can’t do much, run away, or even properly mate. They actually produce the most eggs each time out of any other fish. In the world. 300 million at a time. So at least one is going to make it, proportionally speaking.

But the best part is they consume really only one thing, [actually a few things, but I don’t care about the small fish and crustaceans] JELLYFISH. So why do I and you care? Because a stupid giant Portuguese Man O’ War Jellyfish [Physalia actually] is what started my latest CRPS flair up. Really this and long neck turtles are the only thing that destroy the real ocean monsters. Man O Wars [blue bottles] are native in warmer waters [think Australia] but really can go anywhere. They grow up to 165 ft tentacles, and have both bacterial colonies acting as tentacle stinging cells and neurotoxin filled cells closer to their bodies. Plus they swarm in the thousands. The Australian Coast got hit these weekend, though why hundreds of people got stung instead of GETTING OUT OF THE WATER I won’t know. I suppose misery loves company. The real positive is that an Ocean Sunfish eats HUNDREDS of these suckers daily because they have relatively zero nutritionally content [talk about an actual wast of space, they do NOTHING for us, like mosquitoes]. I guess I will dumb these sort of jellies as MOSQUITOES OF THE OCEAN since they do nothing but cause pain and envenomate things. And the Ocean Sunfish, Mola Mola, should be the bats of the ocean [I mean that’s an insult to bats but it works].

I think I would like to start a fund to bring these giant saucers of the ocean around with me and send them into the seas ahead of beach goers to cleanse the water of the evil. Or maybe just surround myself with them while in the water.

Take a moment to look at all this awesome info on Mola Mola : https://www.aquarium.co.za/blog/entry/everything-you-need-to-know-about-ocean-sunfish

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.