Hope and Possibility

About

We are a MidWest group dedicated to increasing education and research on Complex Regional Pain Syndrome (CRPS)/ Reflex Sympathetic Dystrophy (RSD).

Our mission is to help those affected by CRPS/RSD to live a full and active life.

How did this group begin?

RSD Warriors, stories from the group at the Summer 2013 Retreat

My connection by Mia DeFino

In September 2011, I had a swollen right hand which was originally diagnosed as tendonitis and overuse. The swelling was so bad that I could not close my hand nor see my knuckles. After two weeks of not using my hand, I thought the swelling would go down and the pain would lessen…it only got worse. Back at work, while icing my hand, the pain moved up my forearm and I used my left-hand to do what I could on the computer. As I struggled through the day, my right arm started to suddenly jerk and spasm. On top of that, my arm and hand were burning so badly that I stopped feeling the coldness of the ice. This definitely did not seem like a healing process!

Two weeks into light duty work, I came home on a Friday and realized my left hand was beginning to ache in the same way that my right hand had when it first swelled up. That was one of the worst weekends/few days…the realization that whatever was going on in my body, I had little to no control. Why were my hands burning? why were my hands changing colors? why did I lose all of my strength in my arms? why could I not hold my arm steady? why was there no relief from the pain? why could I not sleep? why was my condition getting worse instead of better? why was the doctor not taking me seriously? why could I not tolerate being touched or washing my hands? why was the swelling not going down? why were there no answers to my questions? That Friday was the last day I drove to work and the last day where I could believe that CRPS was not part of my life.

At the onset of my CRPS/RSD I had never heard of this condition, but as the physiatrist began telling me more, it was clear to me that this was my diagnosis. However, the relief in having a diagnosis was complicated by the fact that there was no clear treatment plan nor was there a basic understanding of this condition. There remains so much that is unknown.

For me, pacing has been extremely difficult. I am a person who wants to do it all and especially all at once! With RSD/CRPS, I have had to learn what needs to be done today and absolutely right at this  minute. The question I ask myself frequently is, ” What would happen if I don’t do this today? Will there be a consequence if this does not happen in my time frame?” What I have found is that very little needs to happen right now, right here. The most essential things that need to happen in a day for me are to eat, to do my exercises, and to interact with the people I care about.  Beyond this, I think about what I would like to do physically throughout the week, so that I can pace myself for activities that use my hands and arms.  Then I see how I’m feeling to determine what I can accomplish on a certain day.

In the past 26 months I have made progress on several fronts: I can drive again, I can enjoy taking showers, I can use my hands for 30 minutes continuously, I can lift Sandy my cat…and the list of personal accomplishments from where I was goes on. On a day to day basis I still struggle to have energy to do all the things I want to do: to work, to do multiple activities with my hands, to sleep through the night, to balance the use and rest of my arms, to maintain the progress I have made, to cook, to plan for the future, to identify new distractions from my pain, to treat my pain, to stay positive, to interact with people who do not understand, to have my insurance continue to cover necessary therapy, to remember who I am as an individual and who I want to become…


Another Pain warrior’s story: Have Pain? Are you Crazy? Rare Diseases Pt. 2

Send us a quick message about anything: Info@midwestcrpssupport.org