I have been a chronic pain patient with neck pain, nerve root compression and cervical degeneration for over 18 years. Unfortunately, each year my pain has gotten worse. During this time I have had four cervical surgeries, with the first two being failures.
After the second surgery I was pretty much abandoned as a patient by the orthopedic surgeon who performed the surgeries. I do need to look at the positive side of this, as I was referred to an excellent pain management doctor who to this day — 14 years later — has kept me as stable as possible.
This particular physician is board certified in both anesthesiology and pain management. He is compassionate, understands what we chronic pain patients feel and handles each of us accordingly.
He stays within the boundaries of the law when it comes to prescribing Schedule II medications and tries his best to use the least amount of medication possible. There are no early refills and if he believes that the patient is not handling the medications correctly — such as sharing or giving away their meds — he will discharge you from his practice.
I would like to add that just prescribing medication is only part of my treatment protocol and there are a host of other modalities which have been included; physical and occupational therapy, bio-feedback, an interferential unit at home, and various types of injections when the pain escalates much higher in intensity. The list goes on and on.
Seven years ago, it was discovered that my spine was not completely fused from the 1996 surgery as was previously believed. The lack of a solid fusion began to create a lot of damage and the potential for paralysis. My pain management physician referred me to a neurosurgeon that specialized in spinal surgery. After reviewing a CAT scan, he told me “whether I do the surgery or someone else does, it should be done as the chance of being paralyzed is pretty certain.”
I won’t go into all of the details of the following two years once the corrective surgery was performed, except to say they were probably the most challenging two years of my life. The surgery was anatomically correct, the pain was not. The pain became much worse, although I do feel that the neurosurgeon did in fact do everything he could in order to correct the damage that had been done.
I made a personal decision that if I could help one person who lives with chronic pain, I would find a way to do so. This led to the development of a blog called Legitimate Pain Patients. I was helped by a graphic artist I once worked with, along with my brother and wife, who have always been there to help in any way possible. We created legitimatepainpatients.org.
We launched the website during the time that the Florida “pill mills” were up and running and making a total mess for those of us who truly and legitimately need these medications to live and have quality of life.
I feel it is very important to know that people in chronic pain may look normal or dress like others. But because pain doesn’t have a face, people who see us may not know that chronic pain is a terrible and horrible disease to have.
So many of us know how chronic pain can affect our families, marriages, relationships, children, and our friends. The dynamics of having a physical disease take an extremely difficult toll on those who are close to us. It takes a tremendous amount of work by those significant others to understand what chronic pain is and how they may be able to help. I can tell you that this process does not take place overnight. It takes a tremendous amount of time out of the lives of both the patient and those around them.
We created our blog to form a coalition to express our collective voices that people in chronic pain have rights too. We want individuals to connect to the site who may be the pain patient, patient advocates, children of patients, friends, and others that need a platform to share their feelings and experiences.
I have learned that one of the most powerful analgesics available to each of us is the power of distraction. This can be used by itself or as an adjunct to our medications.
On the backside of my business card is the following:
“I am able to put my feet on the floor today. I choose to try my best and ‘walk’ away from any discomfort I am having. Thinking about it serves no purpose. Think good health and do my best to feel good.”
I do not achieve this everyday but the fact that I have a focal point is important to me and often gets me through the day.
Recently I heard Carol Burnett talk about her daughter Carrie who passed away from lung cancer. When Carrie was in the hospital, a nurse asked Carol, “Why is Carrie always happy and smiling?”
Carol answered by saying Carrie always says, “Everyday I’m going to wake up and decide that I’m going to love my life.”
Perhaps we as chronic pain patients could learn from this. Even though each day is challenging, we too can find within ourselves that we love our own lives.
Fred Brown lives in central Florida. He is the founder of Legitimate Pain Patients.
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