My Seventy-Month Journey to Being Diagnosed with CRPS

Countless tests and scans have led me to a CRPS diagnosis. This is my story.

The Beginning

In December 2012, while sitting and working on my computer, I had a freak accident. I could not read the font on a document, and goose-necked my head as I leaned forward to bring my eyes closer to the monitor. I felt a pain in my right neck and shoulder, and then watched my right lower arm and hand turn red, instantly feeling pins and needles as if someone had applied a tourniquet. Unbeknownst to me, this was the start of my 70-month, 22-doctor journey to a diagnosis of complex regional pain syndrome (CRPS), formerly called reflex sympathetic dystrophy (RSD).

Since my injury, I have had not one pain-free day. Several times, my arm and hand pain has become so great, that I have wondered if I would feel better without them! I have had limited driving ability, as my hands fall asleep at the wheel even after a short time. I lost my job, as I am no longer able to type on a computer for long periods of time. Four months after my initial injury, while picking up a fork, my left arm and hand suffered the same pins-and-needles tourniquet feeling. I have now learned that CRPS can travel to the opposite side of the body and affect it just the same.

Months of Tests

As I began a series of tests, a cervical MRI revealed that I unknowingly had two bone spurs, one of which had pushed against my spinal canal, pushing it into my spinal cord, leaving my lower arms and hands with partial paralysis (explaining the numb, sensitive pins-and-needles sensation). My doctors all said that my arms and hands showed typical symptoms of a spinal cord injury, but that there were also some unexplained symptoms that were not typical of such an injury. Those symptoms included frequent color changes of both of my hands (from a bright red to a very pale color), as well as the internal burning and sensitivity to touch; my hands also felt ice cold at times.

At one point, doctors thought I might have Raynaud’s disease (a condition in which some areas of the body feel numb and cool in certain circumstances). Another time, they thought it was simply carpal tunnel syndrome. I never had the corrective neck surgery, as my cervical doctor thought it was too late--the nerve damage had already been done. While the doctor would have done cervical surgery to cut off the bone spurs, he warned me that the surgery could result in a paraplegic state, leaving me to wake up in a much worse condition.

I went through several weeks of physical therapy, and that stress made my arms, hands, and neck feel worse. I was prescribed five different pain medicine drugs over the years, most of which did little for my pain, and made me feel like a zombie. I finally settled on Tramadol (a controlled opioid pain medication) as it took a little of the edge off and allowed me to function as best I could.

The Search Continues

I was soon sent back and forth between vascular surgeons and neurologists. In the midst of all this, I noticed I was having an increased sensitivity to sound, forcing me to withdraw from social activities. It had gotten to a point where I was fed up, and knew something had to be wrong. I went to an audiologist, who then referred me to a hyperacusis specialist, where I was diagnosed with hyperacusis in December 2016. Now I wear sound generators in my ears, which work to re-establish the nerve connection between my inner ears and brain. This isolation and change in my lifestyle has been difficult. I’m now learning that hyperacusis can be a part of CRPS, and have sought out more information on the relation between the two. I’m also learning that CRPS can occur acutely (lasting 3 months or less) in some people, and I am seeking information on this as well. All of my symptoms have remained constant since the date of injury.

Finding CRPS

Over the past 70 months, I have had the following imaging tests, injections, and surgeries:

  • Four cervical MRIs
  • Four Electromyographies
  • Ultrasound and x-ray for Thoracic Outlet Syndrome (TOS, which tested negative)
  • Two cervical x-rays
  • A chest x-ray
  • CT Scan and ultrasound of the upper extremities
  • Raynaud’s disease test
  • Upper extremity angiography (which showed my blood traveling through the hands like sludge)
  • Bilateral C6-C7 selective nerve root blocks
  • Spinal epidural
  • Three nerve conduction tests of arms and hands
  • Wrist injection of lidocaine and Kenalog
  • Right hand Carpal Tunnel Surgery
  • Consult for a spinal cord stimulator
  • Right hand MRI with contrast
  • Miscellaneous blood tests
  • Hyperacusis diagnosis (showing hearing sensitivity)
  • Two right side Stellate Ganglion Blocks
  • Three-Phase Bone Scan (which resulted in a positive diagnosis for CRPS). 

After finally being diagnosed with CRPS in July 2018, I know that I will have challenges in the days ahead, and I know that others suffer far worse. It is tough dealing with an invisible condition such as complex regional pain syndrome, as others do not notice my pain. Other than the color changes in my hands, I appear healthy on the outside. At times, it’s a real struggle to push through the pain and try to act normal with a smile on my face.

However, I can honestly say that the support of my doctors, family, friends, and faith has set me through this phase of my life. I fully support the need for CRPS awareness within the medical community as a whole.

-J.K., PPM reader / CPRS patient, California

 

One of Practical Pain Management’s Editorial Board Advisors, responded to a briefer version of this patient’s story:

Dear J.K.,

I am sorry to hear about your difficult circumstances. I suspect that your immediate and early symptoms were the result of the injury to your spinal cord, and that over the subsequent weeks, this morphed into complex regional pain syndrome (CRPS). I am concerned about the potential for the bone spurs to be a source of ongoing neurologic irritation, and the risk of further injury.  I certainly understand that there are also significant risks with surgery. Hopefully, you have received two to three consultations from top-notch, spine specializing neurosurgeons.

Regarding the CRPS, there are many treatment options, which you need to discuss with a pain specialist that works in the area of CRPS.

Regards,

Steven Richeimer, MD
Chief, Division of Pain Medicine
Professor of Anesthesiology & Psychiatry
Director, Online Master’s Degree in Pain Medicine
Keck School of Medicine, USC

Updated on: 07/30/18
Continue Reading:
Complex Regional Pain Syndrome: When the Nurse Becomes the Patient
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