The CRPS Puzzle

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THE CRPS PUZZLE

Our goal is to provide information, education, support and resources for those suffering with Complex Regional Pain Syndrome, their Caregivers, Families and Friends.

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How did a fall down a flight of stairs lead to a crippling and incurable disease known as Complex Regional Pain Syndrome?

It was the fall 1995, I was a successful regional sales and training manager for a global safety company, traveling across the country and loving it. I was an avid dancer and Kevin and I loved living on the go. In route to my first training of the day I had a terrible fall down a large flight of stairs. The post-fall medical findings were a severely sprained ankle, several herniated discs and contusions. I was discharged with an air cast and prescribed a few months of rigorous physical therapy. Physical therapy led to more pain and worsening edema. After just a few weeks I began to voice my concerns that my foot felt like it was getting worse instead of better. We were told that sometimes that happens and to just stick it out. Fast forward six agonizing months of dealing with worsening pain, fatigue and sleep deprivation, only to find out the original exam and x-ray didn’t catch the critical damage from my fall, a badly torn ligament. My gut feeling and complaints of worsening pain every week were correct. The rigorous, multiple hours per day and multiple days per week of physical therapy I was instructed to stick with for six months had worsened the already torn ankle ligament. Now only surgical repair could resolve my damage from the fall. In early 1996 my first podiatric ligament surgery took place and a few weeks later it was back to PT. Two months later my ankle was much worse and even more painful than prior to the ligament repair surgery and now I was unable to bear any weight on it at all. It felt like a blow torch was frying my ankle and foot with swelling (edema) so bad that my ankle became twice its normal size. Even the lightest touch would send me through the roof. Another x-Ray confirmed that bone fragments (surgical errors) left in the ankle from surgery had wedged themselves inside the ankle joint. This irritated the soft tissue and nerves which caused extreme inflammation and more pain. These findings required an urgent second surgery. What I learned later was that during the second surgery my ankle was turned inside out, several nerves were improperly severed and the joint had been drilled (debridement) too deep. It was then that I was diagnosed by the surgeon, numerous orthopedic, anesthesia and other pain management experts as having RSD/CRPS-II. After additional physical therapy I was so excited to be back at work and had done so well that I was promoted. While walking from the airport gate to my car, my foot/ankle collapsed under me and I wasn’t able to bear weight and needed a wheelchair just to get to my car. This was a horrific pain that I'd never felt before, I was terrified. A bone scan was ordered and confirmed what took me multiple Orthopedic opinions and years to comprehend, that 90% of my ankle joint had decayed in just short six months as the result of inaccurate surgical procedures. Shock took over at that point and all I could think of was my career, my independence and tried to map out what could be done and how quickly could I get myself back to 100% functional.     

 When this occurred I was a 32-year young, very active, 100% self-sufficient, independent, determined and career focused woman. My belief has always been “where there's a will there's a way”. After I'd received multiple orthopedic opinions, all of them in agreement that I had only two or three options and they were; fusion, amputation or, a total artificial ankle joint w/tib-fib fusion and bone grafts. I immediately went into problem/puzzle solving mode and began to connect the known dots of who, what, when, where, why and how could I quickly and successfully, physically recover.

My goal was to regain as much physical freedom as possible in choosing to have the first generation, one size fits all, total ankle joint (prosthetic) devices implanted. This was done by a highly skilled trauma surgeon, and revised with hardware, multiple bone grafts from my hip and knee. The total ankle prosthetic(s) required my tib-fibula be fused in two places. Unfortunately, neither of the total ankle joints bonded to my leg or foot despite multiple attempted bone grafts and hardware revisions. After suffering for three years in constant pain from a second failed (non-union) prosthetic joint it was removed. The total ankle was replaced with an extra, extra-large bone and compound graft with supporting hardware in its place with the hope it would fuse solid.

Due to intentional and extensive delays of authorization to obtain proper and timely care by my insurance carrier and claim agents over many years my CRPS-II spread one cell, nervous system and organ at a time until it became systemic. CRPS-II first attacked my immune system with pernicious anemia, then my blood supply, soft tissues, bones, skin, hair and my organs . By 1999 I’d had four years of PT, several foot/ankle surgeries, contracted 10 autoimmune/inflammatory diseases, and the CRPS-II had entirely paralyzed my colon despite numerous conservative therapies. After having tried several pain control methods I was advised that an intrathecal pain pump would be my best option for obtaining even moderate pain relief.

Just when we thought it couldn’t get any worse, CRPS kept spreading up my body and nothing could have prepared us for the systemic meltdown that followed year after year. What began in my foot post-surgery as CRPS-II had spread from my peripheral nerves with phantom limb jerks and tremors up to my central nervous system. CRPS then spread further into my immune system and into other organs with fatty liver (NAFL) and the loss of my entire colon over four years. This left me with three options again. The first was a total and permanent colectomy or, a feeding tube or, an internal ileo-J pouch. Again, we weighed the odds and chose the internal ileo-J pouch. This surgery, like the total ankle prosthetic device, came with its own set of life long complications, at best. The next spread of CRPS was to my blood with DVT’s in my left leg. By 2005 my phantom leg jerks/tremors had spread up to my trunk. After a few expert consultations/exams I was diagnosed with generalized Dystonia resulting from the spread of CRPS-II. My first pulmonary embolisms occurred in 2006. Because CRPS alters every cell in the body, despite blood thinners my blood continues to hyper-clot even today. This caused additional pulmonary embolisms again in 2008, 2009, 2010 and 2011 until I had a vena cava filter implanted to stop the clots from getting into my lungs in 2012. 

By 2007 my CRPS-II had caused the following diseases/diagnoses; short bowel syndrome, malabsorption w/chronic dehydration, hyper-parathyroid, hypo-calcaemia, pancreatitis (NAP), hyperglycemia, livedo reticularis, cushing’s disorder, fibromyalgia, migraines, dysautonomia, vocal & generalized dystonia, alopecia, nail ridging, thermal dysregulation, major depression, sleep deprivation, bursitis, anxiety and osteopenia. By 2009 I began having excessive histamine responses, vascular insufficiencies/collapse, loss of hearing and some vision, vertigo, chronic inflammation, chronic fatigue, chest pain with irregular heart beats (pain related A-fib), gallbladder pain and rapid tumor growth (spread rapidly) that required an immediate full hysterectomy and oophorectomy at just 45. In 2009 CRPS began to destroy my gallbladder with horrific sharp pains. Unfortunately for me it took three ultrasounds and over three years (late 2012) before the gallbladder became engulfed with over 100 gallstones and I became septic before they surgically removed it all. My dystonia continued to spread up my body with sporadic dysreflexia mostly on my right side, in my right eye and arm. These neuromuscular diseases are extremely painful and very fatiguing, make it hard to stand, sit, breathe, talk and swallow when your whole body is in spasms. Ask yourself, how long could you tread water in the ocean before your body would become exhausted? The fact is about five to 10 minutes as it exhausts your entire nervous systems, muscles and body.

After complaining for 11 years (after losing my colon) that my pain and all other medications had been coming out whole on the other end (because of my very, very short bowel) and were having very little if any, effect on reducing the pain, my new pain provider actually listened and made a great change. I was prescribed a duragesic pain patch that absorbs through my skin and starts to work quickly. This pain delivery system allowed me some relief of pain plus, it allowed me to stop taking other oral pain medications. TAKE NOTE! We had to map this out year after year for 11 years, before a change in doctor and medications occurred. This is a perfect example of why you MUST be your own best advocate by understanding as much as you can about your illness and how it can be treated in the best possible way that works for you.

The second enormous improvement came after I got over my ignorant bias against using Medical Marijuana as the healthy herb that it is. I spoke with my primary care doctor, then we did enormous research and educated ourselves and my doctors on what strains work for which diagnoses, etc.. There are thousands, yes you read that right, thousands of years of proof that medical marijuana (whether it’s juiced, cooked, baked or used in a tincture, topical or convection form) offers many healing properties for various diseases and disorders. This is true for humans and animals and unlike prescription drugs there aren’t negative or damaging side effects. I am very fortunate to live in Washington State, one of the first two states in the U.S. to legalize marijuana for patient use. At the time I still required oxygen some part of every day and had multiple disabling dystonia attacks (spasm storms) that kept me bedridden much of the day. My oxygen needs reduced significantly after just a short period of time because the marijuana reduced the severity and the frequency of my dystonia spasms to the point that my disorientation, breathing, swallowing and speech were much less affected. CRPS, dysautonomia and dystonia are progressive, deteriorating, neuro-inflammatory and neuromuscular diseases that are currently incurable, but utilizing the right strain(s)/combination of medical marijuana application w/supplements, medications, meditation, anti-inflammatory diet and reduction of stresses help me considerably.

Over the years I’ve tried a number of treatment options in western & eastern medicine, naturopathic, ayurvedic, neuropsychological and others with varying degrees of success. My approach has been to leave no stone unturned in researching and searching for solutions to my various conditions and share my results with others. When you’re living with an incurable and orphan disease it means trials, errors and more trials and errors, with a lot less success than I’d hoped for.  The bottom line for me is that, after more than thirty surgeries, after seeing more than 140 doctors, I’m still here years after I should have expired and working every day to be better and find solution options! I hope that sharing my journey, what has and hasn’t worked for me along the way, will help others to connect the pieces of their own CRPS puzzle. Wishing everyone many low pain days (LPD), be well.