National Registries

<!--StartFragment-->

According to the National Center for Medical Statistics, over 76 million people report that they have pain.  That is an astounding number to me, and when taken with the fact that pain is the #1 reason why people in the United States seek medical care, I can’t help but wonder why there isn’t more discussion about pain in the media and why there isn’t more of a demand for effective pain treatments.

The fact is that in most cases pain is related to a chronic illness or traumatic injury.  People are out walking for treatments and cures for almost every serious chronic illness, and pain is viewed as a symptom of the illness; therefore, the theory goes that if we could cure the illness the pain would go away.  Meanwhile enough isn’t being done to treat the pain right now, when it is affecting millions of people in almost every aspect of their lives.

 Pain management is a relatively new specialty in the field of medicine.  Unless they select this specialty medical students don’t learn about pain as a separate subject and many doctors treating people with a variety of illnesses don’t know about the physiology of pain or about the most effective treatments for chronic pain.  The result is a serious under treatment of such pain, and in some cases a lack of treatment at all due to a failure on the part of medical professionals to fully understand the extent of the pain, the lack of knowledge about treatments, or in some cases doctors are intimidated by policies and laws that negatively target opiates and other strong pain medications.

I have lived in pain for 45 years.  I have had doctors who told me I couldn’t be in that much pain.  Why? Because they couldn’t fix it!  That was the conclusion I drew at the age of 14, after two years of being told it was either stress causing my pain or I was exaggerating my pain.

Over the years I have been on almost every pain medication, spent time in hospitals in traction, wore a trans electronic stimulator for a few years and was even in a partial body cast for a few months during my senior year in high school.  I had four major spinal surgeries, including an anterior/posterior fusion for spinal instability, which fixed the problem but my pain kept getting worse over the years.  In 2000, I had an intrathecal pump implanted that delivers Morphine, Bupivicaine and Baclofen on a constant basis, which, for the first time in all these years, given me significant relief from my pain, although I do take oral pain medications for breakthrough pain.  Unfortunately, I began having symptoms in the 1980s, which were at first considered to be a result of my spinal problem but in the mid 90s I was diagnosed with Multiple Sclerosis, a progressive and often disabling disease of the Central Nervous System.

I recently began working as a volunteer Advocacy Spokesperson of the Power Over Pain Action Network, a program of the American Pain Foundation and I gave my first presentation in this capacity to the Sickle Cell/Thallasemia Patients Action Network this past Saturday.  I knew a little about Sickle Cell Disease and did some research about the symptoms of, and treatments for this illness before attending the conference.  One thing I knew about Sickle Cell Disease that was reinforced when I spoke to the people at the conference who are living with it is that it can be a terribly painful disease, especially during a flare up, or crisis, as it is called by those who suffer with it.