I have just been given the diagnosis of Chronic Regional Pain Syndrome in my right leg. I haven't walked on my leg since March and I am feeling defeated. I want to walk so bad but when I walk the pain is excruciating. Ive been told that it looks optimistic by the specialist but I don't feel optimistic. My family tries their best to understand but they can't fully get how much my life has changed. I feel like I am grieving who I was and what I can do. I am afraid this will be my forever.
Getting a diagnosis of CRPS can be very hard so we can understand feeling the way you do. It's very normal to grieve the person you were before experiencing chronic pain and to think that what you are experiencing now will be forever.
The good news is that people who get relatively early intervention (as you have) with CRPS can have positive outcomes. Pain isn't a one-size fits all situation so no one can predict what will happen, but if the specialist is feeling optimistic, that is great news.
We know it's hard to remain optimistic when you are coping with pain and limited ability to walk. Here are some ideas that might help:
Research shows that a combination of physical treatments, medication, and psychological support can help manage your symptoms. If you feel comfortable, perhaps you could contact the volunteers at our Connect for Health line, who can offer you some support beyond the doctor's office. They can connect you to support services in your local community.
I came across a few resources that may be able to help you feel better. This article really gives some great tips on self-management.
How to manage and treat CRPS
We did a blog talk radio show with Dr. Brenda Lau focusing on CRPS a while ago. You can access it here.
For your family, perhaps you could show them some of our resources on the Pain BC website so they can better understand your diagnosis.
We know one of the hardest things about living with pain is coping with the emotional impact. Please know that we're here for you and that we understand.