RSD and Me – A New Full Time Job

Living with RSD can feel like a full time job. How can you adapt to the changes and make a positive difference in your life with RSD/CRPS?Written by Guest Blogger Sylvia Miller

Being diagnosed with RSD CRPS can cause people to go through a range of emotions: denial, frustration, confusion, sadness, incompleteness, etc. Sylvia writes about what it was like trying to find an answer that wasn’t RSD/CRPS. What happens after the RSD diagnosis? How can you impact your life regardless of the pain?

3 years ago, I suffered a fall and fractured my ribs.  From that point forward, it seemed to be that I reached out to any doctor to [try to] understand the pain I encountered.   A physician diagnosed me as having RSD, but I thought, surely, this doctor is wrong.  So, I continued to research and search for any understanding about RSD and locate any physician to tell me I did not have RSD.  The news I dreaded hearing confirmed I was diagnosed with RSD. There is no cure, so, where do you go from the point of diagnosis and what do you do after the diagnosis?   Searching countless and excessive research to help me stop the insanity of the pain became a full-time job.  Having family and friends get a glimpse and understanding what I was dealing with was a full-time job.

I was placed out of work and my new full-time job became searching for answers and searching for doctors to help me.  From injections to consults with no relief.  Grasping out to every newspaper, government official and talk show host to spread awareness and no response.  Feeling alone and trying to get family members, friends, acquaintances to understand this disease.   This truly is a full-time job.   I believe unless you experience something yourself, you can truly never understand the depth.

Cancelling plans with friends and family has been consistent as the pain permits me from participating in activities. Finding new ways to do simple household chores has become a challenge but you reinvent a new way to handle. Anxiety has now become an issue. From physical therapy to Yoga to walking, trying anything to keep me occupied in hopes the pain will come to a halt.  Feeling alone has become the new reality.

For now, my search continues, but confirmation is that I get through every day and know somewhere there is an answer that will give life back, stop the insanity, and remind myself daily to never ever give up and positivity is a strong force.

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