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Be Your Own Advocate

Published on March 4, 2020 under RSDS General Info

Written by April Ball for the RSDSA blog. 

April Ball and LeoHow and when did you develop CRPS/RSD?

I had an epidural injection for a herniated disc that I had a reaction to. It was my third injection and it hurt pretty bad when the pain doctor did it. It was unlike the others I had. I cried when the doctor stuck me. I could feel him pushing on my lower back. 24 hours after the injection I could not move my head from side to side. I could not bend slightly and I had to have help walking. I could not lift my right leg or put my sock on my foot. It took almost a year for me to get diagnosed.

I was told that there was nothing wrong with me and that it was just the herniated disc but they could not do surgery because it was not pressing on my nerve enough to deem surgery. I was told I had bursitis and they gave me a Cortisone shot for it. That shot only made me feel worse and walking worse. At that time I did not know I had RDS/CRPS. I was told I had elephant leg when my right leg and foot were swollen and red/purple in color. The doctor who told me I had elephant leg said it was caused from me having a hysterectomy in 2015. I looked him straight in the face and told him he was crazy and got up and walked out of his office. I made one appointment with the pain doctor to see what else could be done. We talked about what was going on and my symptoms and that was when he diagnosed me with CRPS. That was in February 2018.

What has daily life been like since your diagnosis?

My CRPS, which started in my lower back and right leg, has now spread to about 90% of my body. Therefore, daily life is a struggle. I have full body spasms. The spasms wake me up at night. I lose my balance just walking. I am always dizzy. I wish I was able to get up and go to work like I used to. I stay tired all the time. I am not able to stand more than just a few minutes. I have trouble eating and holding a fork or spoon. My appetite has changed because of having CRPS in my stomach and intestines.

What is one thing you wish those without CRPS/RSD could understand?

Everything about the syndrome. Please research and learn everything you can. Ask questions about this disease.

What advice would you give to newly diagnosed Warriors?

Keep a diary and take pictures of your flare ups to show your doctor. Do not be afraid to communicate and ask questions with your doctor. Be your own advocate because no one else will.

What activities or treatments have helped you find temporary or long term relief?

With me, it seems the more active I am the more it hurts me. I cannot walk long distances and now it is getting to where even walking a short distance hurts me. I have a Spinal Cord Stimulator, but it is not giving me the relief that I was hoping for. My right leg still has unbearable pain and spasms about 75-90% of the time when I do something. I cannot even drive because of it. I have to sometimes lie on my left side and that does not always help. And even muscle relaxers and nerve pain medications are not 100% effective.

Anything else you would like to add?

If you have a support system, no matter how big or how small, as my husband tells me, take that circle and roll. I have lost family because of this disease. They do not understand it. They do not want to take the time to understand and support me being sick, and I do not want that. I want people in my life that can accept the fact that I have a disease that there is no cure for and I need their support. I told them if the shoe was on the other foot, I would support and advocate for them. All I got back was grief and negativity.

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