My Story

Complex Regional Pain Syndrome, the uninvited guest that showed up on a chilly autumn night, reversing the subsequent course of my life

The premonition

If only I have heeded the little voice that has been echoing in my head for weeks interrupting my sleep and disturbing me while I was working, if only I’d paid attention to that uneasy feeling in my gut about not attending a certain event, my life wouldn’t have taken such an unexpected detour but, nothing and no one could have stopped the inevitable.

My name is Emma, my family and I were invited to a friend’s wedding, but I didn’t want to go, deep down in my heart I resented even the thought of going there on that day, I would literally get physically sick whenever that thought crossed my mind. I didn’t understand why I felt that way because I have always enjoyed the company of that friend and her family, I haven’t known them for a long time but they are nice, funny, kind and caring and whenever we get together we spend hours talking and laughing, and, of course gossiping too. So, it was a total mystery to me to feel that way. To top things up, the invitation card got lost in the mail. Despite how I felt I had to give in especially when my family kept saying things like “It wouldn’t be nice of you not to go” and “How could you even think about not going despite knowing how much they like you?”. I had to agree to go, I did so begrudgingly. On the eventful day, our friend suggested to have one of the invitees pick us up instead of going by ourselves; what an ill-fated suggestion.

A few minutes before our car ride arrived, a number of inexplicable incidents started happening, they might seem funny to some people even though they weren’t the least bit funny to me on that day, but they are somewhat now, looking back. To name but a few examples, one high heel of my brand new pair of very expensive shoes, that I had on, broke into smithereens while I was standing on carpeted floor, it actually sounded like an explosion, then the hem stitches of one of my family member’s outfit got inexplicably unraveled, it seemed as if someone was playing a bad joke on us. The final straw came when the front door, too, joined the humorless game and refused to cooperate, it acted as if it didn’t recognize the keys which we have been using for years, after several unsuccessful attempts to lock the door, we decided to leave it unlocked because our ride was waiting outside and we have never known or seen the driver before, so it wouldn’t be polite to leave whoever outside waiting.

The inevitable happened

Ten minutes later we were in a horrific car crash, our driver was such a reckless jittery person who refused to let anyone else drive, I can’t even bring myself to mention that individual, that driver was definitely not qualified to drive even children’s tricycle, let alone a car. As soon as we got into the car, and the car started moving we braced ourselves for an imminent disaster, we were certain that we will either crash into a pedestrian(s), or into another car(s) or we shall get ourselves killed, or all of the aforementioned.

I only remember that suddenly the car’s speed increased dramatically and ran the red light, because of the extreme speed, it felt as if we were in an aircraft speeding down the runway during takeoff, we were T-boned by another vehicle (that car was destroyed and the passengers sustained injuries), it seemed as if our car was running at the speed of light, it stopped inches short of the edge of a steep cliff overlooking freeway overpasses, I still hear the high-pitched screeching noise of the brakes, and the whooshing sound of the airbag deployment, strange noises and beeping sounds inside the car, the smell of smoke, the sparks coming out of the opened hood and the fear that the car might explode at any second, to make matters worse, the doors were jammed shut. All those nightmarish moments will definitely stay with me for the rest of my life. It was a cold autumn night and I could barely see anything at all, my mind went blank, all I thought about was getting out of the car, I refused even to think that I wouldn’t be able to open the locked doors, after several attempts, each more stubborn than the last, I managed to open the door next to me, and I don’t know how I did it, I grabbed the passenger who was sitting next to me (one of my family members) and finally managed to get out of the mangled car.  

We consider ourselves extremely lucky to be alive, even the police officers who arrived at the scene kept telling us how lucky we were to be alive. That was the grand finale of a truly eventful day, that day, however, ushered in the beginning of unending harrowing cycle of physical and psychological pain. The instant I stepped out of the car I noticed that both my legs were swollen and badly bruised from the knees down, especially the left leg, it was in a very bad shape and nearly doubled in size below the knee, there were also multiple dark contusions in varying shades of black, blue and orange, but that was not unusual after a crash… a horrific car crash, I thought to myself. I was actually much more concerned about the horrendous pain I was experiencing, I felt like my legs were on fire, as if heated metal rods were inserted into both legs. The severe neck pain/stiffness, unbearable headache, upper and lower back pain that I sustained as a result of the crash were the least of my worries at that time.

The reason I sustained leg injuries was because I was sitting on the back seat, behind the driver, when the car sped up the driver’s seat slid backward hitting both my legs below the knees.

As soon as I returned home the pain became unbearable, I couldn’t tolerate the shower water, and I couldn’t stand the slightest breeze or the softest fabric to touch my legs, it felt as if a ball of fire studded with pins and needles touching my legs. That was more than15 years ago, and life has never been the same since that day.

The other passengers including the driver received “normal” injuries, meaning that they were easily diagnosable and treatable injuries.

I have been healthy all my life, I have always dreaded even the thought of taking any kind of medication, even over-the-counter (OTC) ones, unless it is absolutely necessary, I am thankful that I have never had any major health issues that would require frequent visits to doctors’ offices. I have been also an avid walker, I used to walk a few miles every day, I enjoyed being out in the fresh air. My work requires a great deal of mental concentration, I am a professional linguist and I am also an artist, painting has always been my refuge, my little hideaway, it transports me to an ethereal world where my soul departs our tumultuous planet earth and floats away into the fancy world that is being created by my own imagination.

We, as humans, are aware that health is the most valuable asset in our lives but those who are blessed with good health among us always have a propensity to forget that a minor detour in our lives could perpetually disturb and erase our entire planned and unplanned present and future altogether.

The excruciating pain forced me to seek medical help. I reluctantly had to visit a chiropractor for a treatment of the symptoms associated with whiplash. I warned him not to touch my legs, and he wouldn’t dare anyway, he constantly expressed his concern about both the excruciating burning pain and the unexplained altered appearance of the skin on both legs from knees down, they were red, shiny, extremely tender to the touch and the hair stopped growing in those areas.

My long desperate endeavor to unearth one single clue as to

my mysterious illness

I visited 14 doctors’ offices, they gave me the usual generic diagnosis associated with motor vehicle accidents from soft tissue injury to whiplash, but they were baffled with my case because none of these diagnoses correspond to the horrific pain I have been going through, not to mention the odd appearance of my legs. Some of them looked at me suspiciously, they thought my pain was all in my head, but even then, after taking one look at my purple, reddish, shiny hairless skin over the shin bones, they knew something was not right.

I spent tens of thousands of dollars out of my own money on doctors’ visits, chiropractors and tests including MRIs, X-rays & ultrasounds. And on top of all that, in order not to pay even a small portion of my medical bills, the driver’s insurance company committed fraud after the court concluded that the driver’s negligence was the primary cause of my injuries. But this blog is not about legal fights, so let’s just leave it at that.

I felt extremely depressed, frustrated and powerless. I was genuinely scared. How come none of these experts were able to come to a conclusive diagnosis? I was truly hoping that one of them might be able to explain to me why am I in too much pain? A constant indescribable pain that kept me from sleeping, or enjoying pain-free walks, I very much wanted to feel the fresh air on my legs without crying of pain, I wanted to be able to work again.

One doctor suggested that I could wear specialized sleeves around my legs to reduce the swelling and inflammation of bursitis which arose out of the accident; which I refused as I couldn’t stand anyone coming near my swollen legs especially the left one. Basically, bursitis is a painful condition, it occurs when the fluid-filled sacs called bursae act as cushion to the bones, tendons and muscles near the joints – rupture due to several reasons including injury, infection or overuse, resulting in swelling, severe pain and loss of function.

At times I was frightened at the prospect that no one would figure out what was wrong, and I would have to spend the rest of my life with an undiagnosed painful condition, despite all that, I refused to let the pain define me or control my life, so I never gave up walking but I had to have someone (a family member or a friend) accompany me, it was an uphill struggle, and it still isn’t easy. I couldn’t stand the fabrics touching my skin, nor the lightest breeze, the other problem has to do with my personality, I don’t like receiving sympathetic looks from the people on the street, they depress me so I tried my best to walk normally in order not to attract the attention, it was frustrating and I failed most of the time, it was quite obvious, even to a child, that I was in unbearable pain.

Finally, a diagnosis

Nearly two years later and after being subjected to multiple diagnostic X-rays, ultrasounds, MRIs & blood tests, an orthopedic surgeon diagnosed me with Complex Regional Pain Syndrome (CRPS), formerly Reflex Sympathetic Dystrophy (RSD), the doctor was certain that the injuries I sustained at the time of the impact caused CRPS, I was referred to an outstanding neurologist, and after a meticulous examination he confirmed that I do, indeed, suffer from CRPS and kept saying that he was very sorry, and that I am going to have a tough road ahead of me. Although I couldn’t quite fathom the seriousness of that syndrome I realized that I am about to embark into a new chapter in my life that would not only throw me off course but could also put me on an unexpected painful path. And I was right.

Complex regional pain syndrome, the central nervous system disease

The nervous system comprises of the brain and spinal cord; the peripheral nervous system is made up of nerves that fork off from the spinal cord and extend into the rest of the body. Complex regional pain syndrome (CRPS), formerly known as reflex sympathetic dystrophy (RSD) is a chronic neurological syndrome that mostly affects one of the extremities (arm, leg, hand, or foot). It is a progressive nerve disorder triggered by trauma or injury causing damage to the nervous system, it is believed to be the result of dysfunction in the central or peripheral nervous systems. CRPS occurs when the nerves seem to misfire, sending constant pain signals to the brain causing exaggerated inflammatory reaction to the soft tissue injury (mostly a fracture, or surgery). In a nutshell CRPS is characterized by severe excruciating burning pain out of proportion to the severity of injury, it causes muscle atrophy, increased swelling in the limb, osteoporosis, and a number of other physical and psychological issues, in addition to acute pain involving the entire limb, symptoms can spread to other parts of the body as well. Getting the right diagnosis within the first six months is the key to a remission and meaningful relief, it is vital to start effective treatment before the onset of chronic symptoms.

The neurologist was pleased to learn that I continued my daily walking routine despite the obvious pain, he praised my willpower and determination, he explained that keeping the affected extremity moving is extremely important, despite the pain. Additionally, moderate, nonaggressive exercise increases blood flow to the extremity, thus minimizing edema and plays an important role in increasing muscle mass and bone density. He also added that medication is very important to alleviate the pain, and treatment typically consists of a combination of physical therapy and drug therapy which include antidepressant, anti-inflammatory, in addition to invasive procedures, such as nerve blocks, spinal cord and peripheral nerve stimulation.

I represented a huge challenge for all physicians (and still do), I am one of those people whose body is exceedingly sensitive to almost all types of procedures invasive or non-invasive, the results could be quite possibly fatal, and I don’t tolerate almost any medications, so, I categorically refused all the suggested procedures including spinal cord stimulation and sympathetic nerve block. I wanted something to alleviate the pain not to kill me. Together the orthopedic surgeon and the neurologist customized a treatment plan for me that combines special chiropractic adjustment and physical therapy, they explained that although I managed to maintain my walking routine which helped somewhat my muscles not to become weaken too much, some damage has already been done because I was not diagnosed early, unfortunately it took me 2 years and 14 doctors to get a proper

diagnosis.  I would most likely live with constant pain, but the doctors were hoping that the intensity of the pain would be lessened with physical therapy and chiropractic care. Unfortunately, I couldn’t follow their treatment plan because of the astronomical costs.

Because I didn’t receive any medical care for almost fifteen years (since the day of the accident), the symptoms have spread to other parts of the body.

I often think just how much I used to take things for granted without taking the time to be thankful, I previously failed to fully appreciate what I used to have and what I used to do effortlessly, maybe because I thought it was only normal to be able to do many things like the ability to eat, sleep, walk, run, dance, brush my hair, hold a pen, travel or go to concerts, without pain. I now realize that all those things were not exclusive rights, but were in fact privileges…unearned privileges. Now, I have come to terms with my illness and I have decided to control it, rather than enabling it to control me. I have not-so-bad days and really bad days. I try to focus only on the “not-so-bad days”, some might argue that this is easier said than done, and I agree, but this is the only viable option, considering the alternatives.

Every day presents a new challenge, and stress adds tons to the unendurable pain, I don’t walk as much as I used to because every step seems like walking through an electrified sea, but I refused to let the pain take over me and forced myself to walk. My family has been my hope and strength through this unplanned journey, of course it is never easy for them to see me in constant pain, but they refused to give up hope, they supported me in every possible way, they encouraged me to keep walking and also to use the stationary bike, a family member is always available to accompany me on my walks, their schedules have been adjusted so as to primarily revolve around me, they are my hands when it is too painful to lift a finger, they also encourage me to paint again, I haven’t done that yet, but hopefully I will soon. But most importantly, they constantly help me search for a new approach to treat CRPS especially for someone like me who could never tolerate drugs or invasive or noninvasive therapies.

I have accepted the fact that I may never be pain free, there are days when the intensity of the pain is incomparable with any other kind of pain and I feel helpless and beaten by a merciless enemy and there are days when the pain is less severe and my mind is not fogged up. I have become apprehensive of what the future holds in store for me, I am always worried and anxious about the next -inevitable- flare-up episode. Despite all that I am always optimistic, I try convincing myself that this is just another chapter in my life, another small hurdle and I shall somehow overcome it, sometimes I feel that I am trying to trick my brain into forgetting the pain.

Because pain gnaws away life’s energy and depletes our strength, it actually robs us of our wellbeing and freedom, I always try focusing on the bright side, I try to convince myself every single day that tomorrow will be better than today, I enjoy immensely those days when I can tolerate the pain better than other days, when I can walk outside and breathe some fresh air, or take a stroll on the beach  with a friend. Even though the pain is persistent, I try to ignore it which isn’t easy, but what choice do I have? It was either that or stay home forever and keep lamenting the sad misfortune that has befallen me, and succumb to the dark endless tunnel from which there is no escape. At lease I enjoyed a nice day outside.

Healthcare professionals lack formal training and knowledge in diagnosing CRPS…There needs to be a greater emphasis on early/accurate diagnosis which is especially critical for treating CRPS patients

It is truly mind-boggling, it actually does cross the threshold of ludicrous… How is it possible that most doctors had never even heard of such chronic pain condition? There are hundreds of thousands, if not millions, of people living with this monstrous disease, however, the vast majority of CRPS patients are frequently misdiagnosed due to lack of awareness and inadequate examination by the physicians.

It usually takes an average of at least thirteen doctors, and at least two years for patients with chronic illnesses, including complex regional pain syndrome, to be properly diagnosed. Unfortunately, by the time the correct diagnosis is made, it is too late for those patients.

There must be a way to call attention not only to CRPS/RSD, but also to all chronic pain illnesses, and that was actually part of the reason I decided to write this blog. I am a firm believer that awareness is often the key weapon in conquering diseases, I also believe that with better/increased awareness and knowledge, comes a greater chance to find a cure, and therefore, we must join forces together to spread education of complex regional pain Syndrome. Spreading the word through a blog is a good start, like many others, I wanted to share whatever I could find on the internet from recent researches to clinical trials and treatment.

If only I had heeded that feeling and the tiny voice that was resonating in the back of my head warning me not to go to that fateful event, but then I realized that nothing could have ever stopped the inevitable. That path was predetermined, my actions or inactions would have never changed the predestined course of my life, however, I do listen and pay attention now to whatever that little voice tries to tell me.

Copyright (c) 2020 by mystorywithcrpstheuninvitedguest.com. All rights reserved.

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