- CRPS Complex Regional Pain Syndrome
- Interviews
Kellyk9009's interview
How did all start?
I suffered a partial amputation of my left mike finger while at work
Do you already have a diagnosis? How long did it take you to get it?
I was injured in July and diagnosed in October, even before my initial injury was healed
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have been to an occupational therapist, orthopedic surgeon and two pain specialists. The pain specialist I see now has high knowledge of CRPS, my issue is since this is work comp many of the treatments the doctors want to do are denied completely or work comp delays for weeks before allowing them. I hacer not had anything that has helped with the pain or other symptoms
What has been the most useful thing for you so far?
So far nothing has helped
What have been your biggest difficulties?
I have no use off my left hand so doing anything is difficult or impossible. I can't even tie my shoes. The pain and fatigue make it difficult to even do small things like help my 9 year old make his lunch or cook dinner
How has your social and family environment reacted? Have your social or family relationships changed?
I rarely leave the house due to extreme anxiety and the pain causing me to only want to curl up and cry. My close family has been pretty helpful once they understand a bit about what I'm going through. My 18 year old son is much more understanding than my 9 year old who is sad that I can't play with him. We used to be very active and now I can't even ride bikes with him or play catch
What things have you stopped doing?
I no longer can play sports with my children, I can't ride a bike or hold onto the handle of a tube at the water park. I can't paddle when we canoe or ride horses. I can't roller or ice skate with my kids. I struggle with cooking a meal without hemp and I can't even tie my own shoes. Showering is difficult and I can't do anything with my hair except brush it, which is not easy either
What do you think about the future?
I'm afraid of the future. It seems like things will only get worse and I'm already so limited to what I can do. I don't want my family to have to take care of me. I've already lost so much of my independence and I feel like a failure as a parent, partner and friend because I consistently have to change plans or sit out of activities
So far, which years have been the best years in your life? What have you done during them?
My best years were before my injury. I was active and social. I spent all of my free time with my family and friends. We bowled, skated, canoed, played sports, took road trips, hiked, swam, spent time at water and amusement parks. I worked a full time job and was able to financially and emotionally take care of my family
What would you like to do if you didn’t have your condition?
I would love to have my life back. I had planned on taking a trip with a few girlfriends for our 40th birthday, which just past and because of my pain and lack of social ability I have postponed that idea. I would love to take my kids on trips again and simply go out and play catch out sit in the yard and watch them play without being in so much pain that it's the only thing I can focus on
If you had to describe your life in a sentence, what would it be?
I feel like my life is basically over.
Finally, what advice would you give to a person in a similar situation?
Do anything you can to stay positive and do whatever you can to get the people close to you to read anything they can to understand what you are dealing with.
