Ordinary Pain
Pain is subjective by its very nature. What causes you extreme pain maybe something I would barely notice or the other way around. How much and what kinds of pain you have experienced in your life affects how you experience pain.
Take a look at a standard pain scale. If a child fell off a tricycle and scraped his hands and knees, he might pick #10 – the picture that shows crying in pain. If an adult woman crashed on a bicycle and scraped her hands and knees, she might choose #2. She has likely had enough life experience to know that the stinging on her hands and knees is not anywhere near her “worst pain imaginable.”
Extraordinary Pain
But even adults don’t all have the same experiences with pain. When has a man given birth to a child? Not everyone has had cancer, or broken a bone, or had a limb amputated. McGill University in Canada did extensive research to set a “pain index” that was independent of any particular individual’s experience with pain.
The McGill Pain Index and the standard pain measurement scale only measure the intensity of pain, not the amount of time that level of pain occurs. Childbirth lasts minutes to hours. RSD/CRPS lasts for months or years or a lifetime. Other versions of the McGill Pain Index add more medical conditions on the scale: Fibromyalgia shows up in the upper 20s to low 30s; Arthritis parallels Fracture; Postherpetic neuralgia shows up slightly lower than Phantom Limb pain; Kidney stones are equivalent to childbirth.
My Pain
In December of 2004, I had my right knee replaced. I was only 45 but had stage 4 osteoarthritis since I was 15. My pain levels were extreme immediately after surgery- but everyone assumed that was normal. After all, a total knee replacement was reputed to be the most painful surgery known.
The normal routine for a knee replacement surgery then was one week in the hospital following surgery and then a transfer to a Rehabilitation Hospital for another week to 10 days. Patients had physical therapy multiple times a day, both in the surgical hospital and the Rehabilitation Hospital.
My medical insurance determined that I was “too young” to have physical therapy in the surgical hospital despite knowing my medical history. All insurance companies had started fighting the practice of sending patients to a Rehabilitation Hospital and my insurance made that change also about the time of my surgery. The insurance did allow the surgeon to prescribe the use of a Continuous Positive Motion (CPM) machine. My leg was locked in place and a motor forced the knee to slide back and forth along its prescribed path. The CPM was a common component of care at that time, but I called it the “torture machine.”
So after a week in the hospital, with pain that couldn’t be controlled by morphine or any of the opioids they tried and a knee that still did not bend, I was sent home. I was supposed to start outpatient physical therapy immediately but this was mid-December and all the plans had been for inpatient physical therapy at a Rehabilitation Hosptial.
By the beginning of January, it was obvious that the old scar tissue had bound the new knee, and I had to have a second visit to the operating room to break the scar tissue loose. If the pain and lack of motion in the knee were from the scar tissue, this should have fixed it all.
A couple of weeks later, I was admitted to the hospital for the third time. I assume this was still because of the pain levels. I have no memory of this third trip — just the old bills in a file drawer. During the third hospital visit, my surgeon transferred my care to a Pain Rehabilitation Medical Doctor.
My Diagnosis – CRPS
Within two months of the onset of symptoms, I had a diagnosis and a full team of pain doctors, physical therapists, and a pain psychologist. I did not know at the time how unusual that was. I was diagnosed with Reflex Sympathetic Dystrophy (RSD). The National Institutes of Health had changed the name of the disorder to Chronic Regional Pain Disorder (CRPS) but the name change has been very slow to catch on.
But having a diagnosis didn’t change the pain or the lack of function of the replaced knee. I continued outpatient physical therapy, but without any significant improvement in the range of motion of my knee and no improvement in pain levels.
After six months, the lead doctor finally convinced the insurance company that I needed a different kind of physical therapy. I changed to a different physical therapist and a water-based physical therapy regimen. I started improving my use of the knee, but that didn’t change the pain level. The only treatment that had any significant impact on pain was the use of a TENS unit and lidocaine patches. The Lidocaine patches were costly and the insurance did not want to pay for them. The insurance company was especially after I had hit the catastrophic limits on my insurance and they had to pay 100%.
In November 2005, the medical team started discussing the possibility that the CRPS was permanent, and they needed to find a permanent (implanted) replacement for the TENS machine I carried around.
CRPS Remission
Around the same time, some of the more visible effects of CRPS started to change. The deep maroon color around my knee started to fade, and hair began to grow in the maroon area. The pain level started going down. The medical team saw this as potential indicators that the CRPS was going into remission. When the pain level went down to 10, they declared remission. The pain eventually faded away, but I never forgot. I waited another 15 years to get my left knee replaced in fear of bringing the CRPS out of remission.
