Discrimination Due to Poor Pain/Fatigue Management
A recent visit to the emergency room with my brother who suffers from Ankylosing Spondolitis also known as Bamboo Spine brought anger and deep concerns about pain management in 2014.
The definition provided byWikipedia®, a registered trademark of the Wikimedia Foundation, Inc., a non-profit organization describes in part that Ankylosing spondylitis (AS, from Greek ankylos, fused; spondylos, vertebra; -itis, inflammation), previously known as Bechterew's disease (or syndrome) and Marie-Strümpell disease, is a chronic inflammatory disease of the axial skeleton. It mainly affects joints in the spine and the sacroiliac joint in the pelvis. In severe cases, it can eventually cause complete fusion and rigidity of the spine.
"Bamboo spine" develops when the outer fibers of the fibrous ring of the intervertebral disks ossify, which results in the formation of marginal syndesmophytes between adjoining vertebrae.
There are no blood tests or x-rays that can diagnose this disease It usually begins in the second or third decade of life and tends to occur more often in males.
My brother who is 52 has been living with this debilitating disease since the age of 16. As a result and in my opinion severe mismanagement of his condition he is now on lethal doses of oxicodone and methodone.
His life has become sedentary due to the limitation that this form of arthritis has brought to his life.
Our trip to the emergency started at 8:20am when my brother called me to let me know he was heading to the hospital because he felt weird. I basically insisted in joining him to make sure he wasn’t alone while facing whatever was going on with him.
Upon check in the nurse took his blood pressure and the oxygen levels of his blood. The results were critical and he was facing serious internal bleeding which required 4 units of blood and a 9 day stay in our childhood hospital.
The hospital that we went to is a teaching hospital so there are a lot of 4 year medical students asking background questions and diagnoses.
Sadly, due to the number of narcotic medications that he uses to stay mobile, I got the sense that they were digging to see if he was an addict... The drugs that he’s on thanks to his pain specialist caused the bleeding. To ensure that he was completely open and honest he brought all his medications to the hospital.
Trust me when I say that I’m horrified at the combinations of drugs that he has to take on a daily basis just to get up and moving. His condition has now rendered him to sleep in a chair because of rigidity of his spine. Life is not easy and I’m certain if you’re reading this you can relate.
He is facing a double hip replacement surgery that could end up badly if they have to incubate him. Bringing his head back would surely break his neck so he’s in a no win situation at this young age.
In the emergency room on day 1 the doctors and nurses held his pain medication from him for over 14 hours. They removed the one drug that keeps him moving and left him in a quad room for 9 days living and sleeping in a reclining chair.
He received nothing to drink or eat for over 14 hours as well. We, the patients of these so called pain experts all know that if our pain is under control that any change in management causes increased pain and suffering which takes longer to get back under control. Our sleep, mood and hope disappear when you are treated like a drug addict, forced to take medication that is prescribed in front of a nurse to ensure that the drug was taken.
I am super disgusted with this hospital that will remain nameless. This hospital that treated both my brothers and I of many childhood illnesses turned on my brother who in my opinion was on death’s door upon walking through the front door of the emergency room.
He went from a serious case to mismanagement of pain so severe that he could barely get himself out of the chair to urinate. The doctor that I met asked stupid questions that had nothing to do with his pain management.
When my brother asked for the oxicodone that gives him movement the doctor bluntly refused him and suggested that he use on over the counter cream medication. My brother has tried this cream medication and it doesn’t help him. He told the doctors both in the emergency room and on his floor of this fact yet they refused to give him the medication that would help him get out of the hospital.
Let me ask you why we are still seeing this kind of pain management ignorance in 2014. In Ontario many doctors refuse to prescribe both the drugs that my brother is on for fear of getting into trouble with the College of Physicians and Surgeons. Mostly they are afraid of losing their licence to practice medicine.
Do you have a similar story? Can you relate to this kind of maltreatment? If yes, let us know your story.
Due to this experience I want to reach out to the Ontario Government for solutions. Your story might help them see the light of suffering due to a lack of pain management education at the school level to bias thinking medical professionals who do nothing but harm their patients when they treat them with discrimination because the medical system doesn’t understand chronic pain or chronic fatigue from diseases that are not researched in this country.
I look forward to hearing your story.