Please describe the pain you have experienced and/or are experiencing.
I was diagnosed with Central Pain Syndrome in 2005. All of my left side is constantly numb. Imagine you have hit your funny bone, but the pain never goes away. Wearing clothing feels like rubbing my self with course sand paper, so I dress in loose fitting clothing made of the softest fabric. I put off breakfast. Toast hurts. When I do eat, my left side gums feel swollen. I have to sit down to type this. Now my left leg is throbbing and my backside is burning. Typing with my left hand is painful. It feels like my middle finger nail has pulled back from the nail bed. I generally am either standing or lying down. That makes travel by plane impossible and by car difficult. At least I can ask my driver to pull over so that I can stand up. I used to be able to walk for miles or is that kilometres, but it feels like I'm walking barefoot on gravel. I stumble along using a cane. Rain feels like I'm being hit with a thousand tiny electric shocks. I used to be a systems software analyst, but my concentration is gone and am most likely to make mistakes. For some reason the pain is intensified when it is breezy outside. Yes, I'm inside and the wind is outside.
I could go on and on, but as the neurologist said, "nobody cares".
How has pain affected your life?
I had to stop working. I enjoyed my job and was good at it. I used to sail. Now I'm more likely to fall overboard. I maintained my house, shoveling snow, mowing the lawn, painting rooms, etc... Now I have to rely on outside help. I burn food on the stove top, because I'm easily distracted. I try to cook, but chopping one handed is impossible. I drop things from my left hand as the feeling is all wrong. Shopping in a store is difficult. I have to ask for a drive and need help with carrying groceries or other items. I haven't had a good nights sleep in fifteen years; two and a half hours is a personal best. I dream in pain. I avoid being hugged and that double cheek kiss. On occasion, I've had to read the same paragraph over. By my third try, I give up and put the book down. I'm not sure if it's exhaustion or pain that is causing me to have short term memory loss. Sounds like dementia, doesn't it?
What challenges have you faced?
I've lost all faith in our medical system. The neurologists were dismissive. When the neurologist ran out of drugs from the blue Pharmaceuticals book, he told me he could do nothing more. I went to a pain management clinic. Yep, more drugs. My family doctor sent a letter and said he'd taken on too many patients and was dropping me. I need an advocate. You can see a leg in a cast or swollen joints, but you can't see pain. Are there any clinical studies being done? How do I get involved? Are there any alternatives to drugs?
What has helped you the most?
I have good friends. I drink alcohol. Oh, not all the time. Days go by without a drop. A psychologist explained the difference between our sympathetic and parasympathetic nervous system and how alcohol relaxes the body. I only watch happy tv shows, no blood or guns or anything else that would depress me. OK, I do watch the news. Laughter is the best medicine.
Thanks for listening.
Thank you for your interest in this consultation with the Canadian Pain Task Force towards an improved approach to better understand, prevent, and manage pain in Canada.
The online consultation is now closed, and written submissions are no longer being accepted.
Feedback provided from the consultation will inform a report identifying best and leading practices, potential areas for improvement, and elements of an improved approach to pain management in fall 2020.
For more information on the Task Force, please visit the following link: https://www.canada.ca/en/health-canada/corporate/about-health-canada/public-engagement/external-advisory-bodies/canadian-pain-task-force.html
Keep in touch with us via email at CPTF email@example.com
Canadian Pain Task Force