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Elizabeth Kiss Speaks on Why CRPS Warriors Can’t Give Up

Published on November 4, 2019 under RSDS General Info
Written by Elizabeth Kiss for the RSDSA blog.
Elizabeth Kiss CRPS RSDSA
My name is Liz. I live in Alaska and I am 50 years old.
I was diagnosed with CRPS in late 2015 after I attended my brothers wedding in Minnesota.  I honestly do know what happened other than the next day I woke up and my right ankle and foot were swollen up like balloons and it was very painful. When we got home, I went to my doctor who sent me to an orthopedic foot surgeon who did x0rays and could find nothing wrong. I was then sent to a spine specialist who did x-rays on my lower spine and also an MRI. She then sent me to a pain doctor for an EMG. After that, I finally a diagnosis! I looked at her funny when she told me I had CRPS. It sounded like some crazy infection you would get from swimming in an infectious lake in the deep deep south lol.
Then it was explained to me and of course I did my own research. I cried for days. I thought, “I have to live with this for the rest of my life? Really?”
The pain was relentless. Absolutely nothing the doctor told me to do helped, so he started putting me on medication.  Since then I have been on Gabapentin, Percocet, and muscle relaxers. You name it, I’m on it.  It truly does help. But this disease rapidly spread to my leg and then my whole left side in about six months. It also spread to my upper extremities. For some reason, that pain doctor released me from his care. I honestly do not know why. My new pain doctor cannot even find out. It’s kinda weird.
So here I am now. I have been fighting disability for years, which is another story that I would love to tell if anyone is interested.
To make things even better, this past July I fell and broke my left hip and had to have a total hip replacement. Talk about spreading worse within a matter of days!
What we have to realize is that we can not give up! We can and WILL survive with the support of each other and our stories. We are not alone.
It hurts so bad when people who do not understand the disease, and do not want to research it, give us advise on how to cope. Really? Walk in our shoes for a day. I dare you.
You know what else gets me?  I hear, I know how you feel, my (insert body part here) all the time.  Or being called an addict! WE ARE NOT ADDICTS! We have very real relentless pain that will not go away, ever!
The only thing I have found that truly helps my pain is being in a pool whether I am swimming or walking. It is temporary relief, but it does help. Of course here in Alaska, we do not have too many pools and driving is a big no for me. I do it only when I have no other option, but it is scary. I’m always thinking about what would happen if I get another stabbing pain when my foot is on the gas or brake?
I have two beautiful grandchildren that I can not play with or take to the park and it breaks my heart.  I have lost so many friends who just do not want to deal or hear about it. People just don’t get it.

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