Written by Julie Manni for the RSDSA blog.
How and when did you develop CRPS/RSD?
My journey with CRPS/RSD started in the fall of 2001 when I was 12 years old. I developed a gastric stomach ulcer and while I was on bed rest to heal the ulcer, I developed this severe aching crushing pain in both my legs. Six months later I was diagnosed with CRPS/RSD. The pain started in my legs but over the years spread to my entire body.
What has daily life been like since your diagnosis?
Daily life has been kind of a roller coaster over the past 18 years. I have had many debilitating years and many functional years. I have had times where my pain was able to go into remission. It was still there, but no where near as bad and I could hold down a job and some what of a life. I have had many years of struggles and devastation where my life was taken over and controlled by my pain. CRPS/RSD puts a lot of limits on my life and controls what I do, but I try my hardest to do the things that make me happy and live my life the way I want it the best I can.
What is one thing you wish those without CRPS/RSD could understand?
Just because I am not crying or telling you how bad my pain is, does not mean it is not killing me. When you live with pain for so long, it becomes something that is part of you. It becomes your everyday life and never goes away. You kind of accept that you are going to be in pain forever and try your best to tolerate it. People unfortunately take the silence as you’re not in pain anymore and think it is gone until it gets so bad that you cry or react. But in reality, we are struggling every second of every day. Therefore, I would like more awareness of CRPS/RSD so people can understand the intensity of our situations and be more understanding and tolerant.
What advice would you give to newly diagnosed Warriors?
Life with CRPS/RSD is a difficult one. It can be full of hard challenges and struggles most people do not face. It will change your life, but it can also create positive things. Living with any kind of illness makes you mentally strong because you have to deal with struggles most people do not have to and it makes you grow and mature as a person. It gives you a sense of empathy and compassion to help others.
Also, remember to be your own advocate. Speak up to your doctors as much as possible and tell them exactly how you feel. The more information you give, the more it helps them. You are the only one who feels your pain.
What advice would you give to Warriors who have had CRPS/RSD for many years?
Never give up. Never stop trying new therapists and treatments. Try your best to keep an open mind and stay as positive as possible. Never settle for a doctor that you do not connect with or one you disagree with their treatment plan. You will eventually find the right one, but it may take a few tries.
Additionally, never give up on yourself. People might doubt you, but you know your body and pain better than anyone else and you deserve to get relief.
While CRPS/RSD has caused me a life of pain and struggles, it has also made me a compassionate and mature person. It has taught me to advocate for myself and to always have hope that things will get better. Never give up on yourself.
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