Written by Kathleen Fechter for the RSDSA blog.
How and when did you develop CRPS/RSD?
I hurt my knee at work and my CRPS developed from that injury about 5-6 years ago. I was misdiagnosed about three times.
What has daily life been like since your diagnosis?
Everyday was limited, I could not walk to the mailbox on my own, and if I did it was a good day. My husband and I could not really enjoy our time as newlyweds because each day was based on my pain levels and what I could handle before needing to go back home. I was able to hold a job, but I was usually on strong pain meds until they did not really work for me anymore. More than half the time I wanted to crawl out of my skin.
What is one thing you wish those without CRPS/RSD could understand?
I wish people would try to be more empathic and realize that this kind of pain is nothing to wish on anyone. I still do not think my friends, the ones who are suppose to be supportive, really appreciate what I went/am still going through to get my life back.
What advice would you give to newly diagnosed Warriors?
Do not be afraid to ask hard questions and think outside the box when it comes to doctors and treatments. Keep stress levels as low as you can, control what you can, let go of what you cannot. Get to know your body again. Do not be afraid to advocate for yourself.
Make yourself a “therapy corner”: a place for a warrior to distress, keep a heating pad nearby, a favorite blanket, etc. Basically all the things that bring you comfort on the really bad days.
What advice would you give to Warriors who have had CRPS/RSD for many years?
Do not give up, as impossible as it may seem, do not let the pain win. I let it control my life for too long. I had to find a way to motivate myself to take back my body and not let the pain ruin me. One may never be the person they once were, but there will be a new found strength and better life ahead.
What activities or treatments have helped you find temporary or long term relief?
I have been in remission since January because of Dr. Damon Orlando. I received The Calmare (aka the scrambler) Treatment and have been pain free since with few “flare scares” since. I also changed my diet to watch out for foods that would be more inflammatory. I now take the train and walk to work. In fact I now walk about two miles a day. I have been able to stretch and do normal household chores without it knocking the wind out of me.
What else would you like to add?
This website I made has been the only place I can put into words what living with CRPS is like: kathleenpadilla89.wixsite.com/takingbackcontrol
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