I am a physician and I have complex regional pain syndrome (CRPS). My diagnosis came after a car accident followed by neck surgery. It took two years for someone to finally confirm my diagnosis. Now, instead of being on equal footing with my colleagues, I was trying to explain how the smell of pineapple and strong perfume made my pain worse. How my children couldn’t walk across the floor too loudly or rain drops hitting my arm made me scream. When the barometric pressure dropped I became completely nonfunctional. Pharmacies I used to call prescriptions in to were now treating me like a drug-seeker, often making it very difficult to get my medication. I was used to dealing with this for my patients but the fear each month of possibly not getting my medication continues even now, six years later.
I worked for three years after my symptoms started. At the end I was lying on the floor between each patient. This was a practice I built. I knew each and every patient by name and most of their families too.
Like many stories I have read, what my doctors didn’t give me was a true, realistic picture of CRPS and what to expect. How will it impact my life? What are the long-term consequences? How do I adjust my life? How do I deal with pain flares? Not one doctor knew that every single form of recreation I had ever known had been taken away. No one asked. I had exercised five days a week since my teens and now I couldn’t. What should I do? No one ever told me we can’t fix this. No one ever set realistic expectations.
Truth be told, our training leaves us poorly equipped to do a lot of this. This is no excuse. As a physician, having a patient with a particular illness is by far the best learning experience out there. Obviously we have to know what we are doing prior to treating you, but listening to the patient, hearing their experience and listening to their needs is where the fine tuning in our training comes in. What I am saying is I hear you all when you say your physicians let you down in some ways. What I am asking, of people who already fight too hard, is please understand medical knowledge doesn’t compete with real life experience. Please tell your doctor exactly what you need from them. Share your symptoms and how bad they truly are. Share what works for you and what resources you find helpful. We as physicians can be your biggest advocates but sometimes forget that even though we can’t fix something, we certainly can make it a lot more tolerable by listening, acknowledging your pain, encouraging you to keep going and researching information you bring to us.