Pain Advocacy

As fibrotastic people, we will all find ourselves needing to advocate for better pain management and pain awareness. Here is a link for a website to help you or your loved ones to begin advocating for better treatment of your pain - In the Face of Pain

If you are a person living with fibromyalgia, then you are likely a person who is living with relentless chronic pain. Your pain levels may fluctuate throughout the day, week or month, but chances are you are rarely without your constant companion, pain. It is not true that misery loves company, so knowing that you are just one of some 76 million people in the United States who is in pain today does not really help you feel any better.

The majority of chronic pain sufferers encounter a wall of indifference from the medical profession about their pain. It is somewhere between extremely difficult to impossible to find a physician who is willing to work with you to find a treatment for your pain. Most of us spend nearly 5 years seeking a diagnosis and almost as long seeing a compassionate physician who is not afraid to treat our pain.

How many of you have been told by your doctor that they are unable to prescribe a pain medication because you will become addicted? I once tried to explain to my rheumatologist the difference between addiction and dependance - but I think I only made him angy by presuming I knew something that he did not. Since he had already decided I was a probably an addict and psychologically disturbed, it was easy for him to simply dismiss me in the end. He kept mentioning Michael Jackson as the reason he would not work with me on pain relief.

I have even been denied pain medication after a surgical procedure. I really liked my surgeon. He came highly reccomended. We had tried non-surgical solutions to my problem first. I had explained my fibromyalgia to him on several occasions. I voiced my concerns about post operative pain, in light of my heightened pain response I wanted to be sure he knew everything about my medical condition. He continued to reassure me that my surgery would involve minimal post-operative pain. When I awoke in the recovery room I was in so much pain I could not speak, I could only cry in agony. The nurse immediatly went looking for pain medication for me. My agony was obvious. My husband sat with me and watched as I could not even speak, I could only sob in agonizing pain. My recovery took weeks longer than a 'normal' patient. During one phase of recovery, a cast was removed from my arm. I called the doctor and begged him to put it back on, because everytime I moved, the pain was so searing it would literally bring me to my knees. Again I explained to my surgeon that I needed pain medication to help me endure what was happening to me. I was told to take an ibuprofen. I don't think my doctor believed my pain. He kept saying I shouldn't have it. It was a simple procedure. He had done hundreds of them. People recover quickly. The fact that I DID have pain - that I WAS suffering - did not matter in the face of what he knew. In his experience, the pain associated with my procedure was minimal and could be managed with an over the counter pain reliever. End of discussion. So I suffered for weeks. I had consented to surgery because months of pain, physical therapy and cortisone injections had not eradicated a chronic painful condition in my wrist. My doctor denied me appropriate post operative pain management because in his experience, my pain did not exist.

Do we need more pain advocacy and education? I think we do. In The Face of Pain