What is this hellacious disease and disorder that has crippled my body and killed my spirit
It’s hard to believe that I am one of many that have been struck with it
Legs on fire, writhing in pain
Never to have my body return to normal again
Lack of sleep sweat pouring all over the sheets
Pain management is a complicated feat
A Molotov cocktail containing a myriad of pills
Dizziness and weight gain one cannot be thrilled
Emotionally exhausted, depression and crying
Days like this have forced many folks to think about dying
“What is your pain on a scale from one to ten?”
It’s off the charts so don’t ever ask me again!
What doctor should I see today
No chance this is ever going to go away
Suffer in silence awash in fear
Many people don’t care or even want to hear!
There comes a time, when one doesn’t realize how quickly and dramatically life can change. We think that the day-to-day is mundane. In retrospect, my life couldn’t have been better or easier. I entered the field of teaching as a mid-career professional. I was probably considered no “spring chicken” at the age of forty. But, I was an outstanding teacher who could slam a tennis ball across the net three days a week, attend palates classes two days a week, and participate in a yoga class on the weekend. All of that ended five years ago.
We thought that I had a tennis injury in my left leg. There was a slight ACL tear but nothing significant. The small procedure I had done affirmed that there was no cause for alarm. It took one smart orthopedic surgeon to tell me he was not performing an operation of any kind, and one smart orthopedic surgeon who told me I should see a pain management specialist. This is such an atypical response for most people with CRPS. Patients are told there is nothing wrong with them, they are cuckoo, and should seek psychiatric help, or just go home and call it a day.
I had developed Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD). Many people call it “CRAPS” and rightfully so. My left kneecap became blue and mottled looking, you could not even touch it because the pain was off the charts. I couldn’t wear clothes because any kind of fabric was torturous against my legs, and I sweated profusely all day. If somebody so much as laid a finger on me I would want to punch him or her with one of my fully functioning hands.
They say the pain is greater then that of cancer, giving birth, or sustaining a major injury. I had not endured any of these things There were months when I was laid up in bed unable to move. The CRPS spread from my left leg to my right leg. I seriously considered going outside to the curb and have a MAC truck hit me! It’s no wonder the suicide rate is so high for this disorder. Depression sets in quickly.
To think that there are people throughout the country who do not have access to specialized doctors. Many have to see at least seven doctors before they are given a proper diagnosis and many specialists do not accept certain insurances. My condition worsened and I was becoming desperate for answers! How can you have someone go for physical therapy twice a week when their pain is not even under control! How can you do seven grueling spinal blocks when the first one didn’t provide any relief?
The answers I was seeking did not involve going to someone in Santa Monica for herbs, have acupuncture sessions, or just meditate. Many of the best doctors have a waiting period of three years before you can get in to see them! Luckily, my neurologist referred me to one of the top ten pain doctors in the country. I knew I had finally found the right doctor. He is a pioneer in CRPS! Imagine after all this time someone telling me they would “take over my pain.” Imagine having someone affirm that this was not all in my head and that I was not “Looney Tunes.” He discovered quickly that I did have CRPS after a physical examination. Unfortunately, I had missed a critical window for harnessing this disorder after months and months of insanity.
There was talk of a spinal cord stimulator, there was talk of ketamine (a major drug infusion), there was talk of several pain relieving scenarios. This doctor chose a spinal cord stimulator trial. If you get 50% or more pain relief, then you are a candidate for having this device implanted. Luckily, the spinal cord stimulator was a success! It gave me part of my life back. Yes, I was able to live with a reduced amount of pain-hallelujah! No, I cannot walk more then several blocks, no I cannot participate in any type of sport. I have had to cultivate new interests that involve writing and artwork. I finally had to take early retirement. It became so hard to navigate the classroom. After three falls within a three month period, I sadly “put up the white flag” and surrendered! ! In the months to come, the CRPS spread to my left arm. My doctor had to put compatible leads into both arms. The pain became unbearable again from my shoulder all the way down my arm to the tips of my fingers. I had numbness and tingling in my hand and another useful appendage did not allow me any range of motion just searing pain! But, I get up every day and somehow push myself to persevere. I dedicate this article to all of the brave people that may never be properly diagnosed. Unfortunately, there is no cure for CRPS, and I like many others, live with pain every single day of my life.