Do Whatever It Takes to Find a Cure
Written by Melissa Uchic for the RSDSA blog.
How and when did you develop CRPS/RSD?
My initial injury is more of an educated guess between myself and my doctors. I can trace symptoms back to an epidural during childbirth in 2005.
What has daily life been like since your diagnosis?
My life has been ever-changing since 2005. It started with just back pain, but as an athlete, I was used to back pain and tried to charge through it. But over the years, and more significantly so in the past two years, my quality of life has been declining. My CRPS has spread to my whole body. I have not been able to use my thumbs for over a year, I limp with both legs, my spine hurts and is so tender that just putting a shirt on sets off a flare. My gallbladder and digestive system are involved, so eating is not always possible. I cannot walk, sit, or stand for long periods of time so I feel like I miss a lot with my children. There are so many symptoms that all “talk” to each other that on any given day, I may not be physically able to get out of bed. Life is terrible when you feel like walking death.
What is one thing you wish those without CRPS/RSD could understand?
I need people to understand that even when I am at work, or smiling, or making a joke, I am in pain and sometimes need certain accommodations.
What advice would you give to newly diagnosed Warriors?
RESEARCH. Constantly research the diagnosis, the doctors in your area, the treatments available for your stage – research and make print outs. I cannot tell you how many times having information to give to ER doctors or new doctors has made them stop treating me like a hypochondriac.
What advice would you give to Warriors who have had CRPS/RSD for many years?
Honestly, the same advice. There is only so much WE can do: watch your diet, do physical therapy, take your meds. The only other thing we can do is research. There is always new information that many doctors are not even aware of. Be your own advocate.
What activities or treatments have helped you find temporary or long term relief?
I find Lyrica helps some of the burning and medical marijuana has been life-changing because it allows me to eat and sleep.
Anything else you would like to add?
Doctors need to be better informed, and one way to accomplish that is to make people aware of CRPS. The more people who know about it, the better. Spread awareness. Use social media, tag medical professionals, do whatever it takes to find a cure!
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