I would much rather work on genealogy, travel, or learn something fun. But after researching as many medical sites and Facebook groups as possible, I knew I needed to write about my experiences with CRPS.
A Rare Disorder
Chronic Regional Pain Syndrome is extremely rare. Statistically, it takes most people several doctors and several years to be diagnosed with CRPS. According to National Organization for Rare Diseases (NORD), approximately 200,000 people suffer from CRPS in a typical year. There is no such thing as “standard treatment.” There is no such thing as a “typical CRPS.” There are not enough of us, so each person’s story is essential.
There is no known cause or cure.
Due to the usual late diagnosis of CRPS, most people in Facebook Groups have permanent CRPS. And their stories are terrifying for someone recently diagnosed.
Good News or Bad News?
I was diagnosed with Stage 4 (bone-on-bone) osteoarthritis in both knees in High School. One new treatment at the time was knee replacement surgery. But the manufacturers of these new titanium knees made them fit professional football players, not high school girls.
My orthopedist included me in a clinical trial for surgery that altered the mechanics of knee movement to reduce the pain level on my 18th birthday. Unfortunately, because I had osteoarthritis for so long, I had an unusually high pain tolerance. As a result, I kept turning down pain medications after the surgery. After all, I was in much less pain after the surgery.
A university football player and I were the last two members of the trial. I could hear the football player screaming in pain. The nurses would run to get him more painkillers and then run to me, assuming I needed it too. I never did.
After college, I moved to Houston to work for NASA. One of my first chores was to find a new orthopedist. For 20 years, he complained that my pain tolerance was dangerously high. He had done several surgeries on my knees, and when I was in my forties, it was finally time to start replacing the knees. The technology still needed more work, but I was dragging one leg because that knee didn’t work anymore.
The Trigger
CRPS is usually initiated (not caused) by a trigger. The trigger could be tripping on a curb, being hit by a football, a car crash, an industrial accident, a perfectly executed surgery, or nothing obvious.
I checked into the hospital for the surgery. The receptionist started screaming at me because I was having my knee replaced while her insurance had turned down her husband’s surgery. Someone had to drag her away so another receptionist could complete my check-in.
The surgery seemed to go well. The doctor ordered physical therapy and walking on the same day as the surgery – but my insurance decided not to comply as I was “too young” to need the standard care. For the first time, I was in extreme pain after surgery. I was crying, and nothing helped reduce the pain. The insurance company sent me home early because I was “too young” to have complications.
Since the physical therapy started late, scar tissue grew, preventing the joint from moving correctly. I was crying in the orthopedist’s office, so he was concerned that something was wrong. So back to the hospital to remove the excess scar tissue binding the knee joint. But it didn’t help with the pain.
I returned to the hospital the third time to re-open the knee and find out what was causing the pain. This time the orthopedist brought a friend who specialized in unusual orthopedic rehab. They did not find any mechanical issues and closed the knee back up.
Because my orthopedist knew of my unusually high pain tolerance, he did not dismiss the pain or pretend it was “all in my head.” But he realized he did not have the background to deal with it. So he transferred me to his friend.
A lifetime of pain became the “good news” of worse pain. I was diagnosed with Complex Regional Pain Disorder within six weeks of surgery. That gave me the best opportunity to get that beast into remission.
CRPS “Friends”
CRPS is a neurological disorder, and like most neurological disorders, collects others as if it were a Trojan Horse. So not only did I have CRPS, but Restless Leg Syndrome, Restless Limb Syndrome, Peripheral Neuropathy, and Sleep Apnea.
CRPS Remission
If you receive a diagnosis of CRPS in the first 3-12 months of onset, you have a chance at remission. No one knows why. But you have to remember that there is no cure. You will still have other related issues. And remission is temporary.
What is remission?
- Reduction or elimination of the shooting and burning nerve pain
- The skin color and texture return to normal
- Hair growth returns to normal
How do you get into remission?
- The truth is no one knows, so many doctors and other medical professionals make up an answer that they think makes sense.
- Every medical team tries whatever combination of physical therapy, psychology, home exercises, surgical intervention, and medications they can think up until something works.
How long does remission last?
Since no one tracks remission, no one knows. For someone with remission who sees the same doctor when remission ends, the answer seems to be about three years. But between changing jobs and even the same job changing insurance companies, keeping the same doctor is not as common as it once was.
My remission lasted 15 years. During those 15 years, I was constantly worried about doing something that would re-trigger the CRPS. If I had understood it would come back sometime, no matter what, I might have been less stressed.
Although the CRPS was in remission, the Restless Leg Syndrome, Peripheral Neuropathy, and Sleep Apnea remained active.
Now that it is active again, the CRPS brought along some new friends:
- Brain Fog
- Non-epileptic brain wave irregularity
- Chronic inflammatory demyelinating polyneuropathy (CIDP)
- High/low blood pressure swings
- Extreme fatigue
- Muscle Spasms
- Muscle Weakness
CRPS Cure
In the past 3,000 years, medical professionals have looked at ways to make those with CRPS suffer less. But there has been almost no effort put into finding a cure. It is time for a cure.
